C2

Life is grand.

2006-08-20T23:02:00.000-07:00

I wanted to check in briefly while spirits were high just to let everyone out there know that I am living the good life. Been out a lot with all kinds of friends--ones I've had forever (like my best friend Dave who I've been best friends with since the 2nd grade) to my work crew at The Center (who I went out with tonight!) and all of them are amazing. I am really appreciating this wonderful life that I have gotten a 3rd chance to live at and savoring every moment.

I rarely take a moment to realize what I have been through, but gearing up to start some reflective writing and getting knee deep into this job search all over again, it really brings out the big stuff. I am a SUPERSTAR and there is nothing you can do about it!!! I have been through hell and back. TWICE. And I deserve the best. So the world better recognize that I am about to take it by storm. That's all I have to say about that.

(Stepping down from my cancer pedestal...) Well, that was fun. No but really, I am kind of thinking about writing a book. A children's book. The kind of cancer I have been dealing with effects mostly children, so I am going to do a little research and find out what's out there for kids with cancer and lend my incredible writing skills to the cause. I have been using my type-A personality traits to make some money helping high school seniors with their college applications. It's fun and it makes me feel young. This past weekend I celebrated my friend Katie Ford's 25th birthday and it made me feel grown up and old! She owns a house and is a real teacher! We grew up together. Very strange. I feel so behind in this life.

My support group has been a lot different without Pam and Cathy and Bill. It's like a big hole. I also miss Rachel...she is the 23-year-old sarcoma survivor that is pretty much an amazing person. She's my hero on MySpace. Anyway, I am starting to babble...hope everyone is enjoying their last few weeks of summer. SAVOR EVERY MOMENT!!!

Love,
Jason

Good MRI results/back from camp

2006-08-08T15:25:00.000-07:00

I just got home from 5 weeks away working at Camp Taum Sauk, my second home in the Ozark foothills. It was amazing as always and I had a blast with the kids and the incredible staff. It was my second summer as a program director and I did the staff scheduling. It was a great job for me, kind of like putting together a puzzle each day with 30x7 pieces. I spent as much time as I could on the river doing canoe and tube floats and also spent a lot of time driving van trips to local hot spots and state parks. This was my 11th summer down there over the past 14 years. It's like one big family and it was the best possible place for me to finish my immediate recovery from treatment.

This past Monday I had my first post-treatment MRI and got the results Tuesday from Dr. Linette. The results were "good" according to the report and the doctors, but it wasn't the overwhelming kind of "GREAT" that I was hoping for. Dr. Linette seemed a little apprehensive. He said that in 3 months instead of doing another MRI, that we will do a PET scan, which I've had before. It can pinpoint metastasized activity and can be compared to the past PET I had 6 months ago that helped plan the course of my treatment. He said the best thing to do at this point is move on and that's what I plan to do. However, it still frightens and depresses me a great deal that the doctor seemed a little apprehensive about things being totally gone and gone for good. My next diagnostic procedure will be a bone marrow biopsy coming up in 3 weeks or so on day +100 from my transplant. This will give us a better idea if the intense chemo was able to kill all the cancer in my bone marrow which is really important. I am really hoping the results of that one are good.

Otherwise, I am preparing to move forward with my life after a summer of working recovery. Camp was excellent. I have been hanging out with camp staff friends all week and am returning to work at The Center this afternoon. It looks like I will be working 25 hours a week there for the next few months until I get a full-time job. I am planning on getting my resume revised a bit next week and starting the big search all over again. It's really deja vu from last fall. I was doing all this at the exact same time last year, looking for a job and then planning on looking for an apartment or condo. I really hope fate lets me move forward with everything this time around. I am doing everything I can to stay healthy--eating well and exercising and staying on top of my health, but it's nothing I didn't do before.

I should have plenty of time to check in more regularly as this summer winds down and the fall begins. Please continue to support me, as this journey is far from over!

Central line out

2006-07-12T17:58:00.000-07:00

I am home on a quick respite from camp to get the central line catheter removed from my chest. I got it out this afternoon and it feels wonderful to be rid of this physical symbol of the cancer and transplant experience. It was relatively simple, not totally painless but SO worth the slight pain. It was in there for 6 months, so there was a lot of yanking that had to take place, but they numbed me up with a little Lidocane and pulled that sucker out. I've got a bandage on there now for the next 24 hours or so, then I am free to take it out and shower and just wear a bandaid until it scars up. Should be no time at all.

This has freed me from the constant worry of an infection and keeping this area dry and clean at all times, especially a hassle when showering. Now I can swim at camp which makes my job a lot easier and more fun. Camp is going well. My job is a lot more low key this year than last year, which I like and don't like at the same time. It's a huge adjustment of responsibilities and daily schedule, so that has been a little tough, but I still feel like I am making a reasonable contribution despite my limits. It is somewhat frustrating because I feel like people are hesitant to ask me to do things and about my capabilities and I feel so confident in whatever I take on that it creates a conflict. Then I surprise myself by struggling with something that I did last year so effortlessly. All in all, it's where I need to be right now and I am enjoying my time and role there. It's like one big family and the kids are worth it all.

Yesterday I received some sad news from my support group at The Wellness Community. Two women that I had become close with the past six months both died Monday and Tuesday due to complications from the treatment of their disease. Cathy was a grandmotherly figure to me, always sharp and I felt very close to her in group. She had been battling ovarian cancer for the past 4 years, almost constantly on chemotherapy. I have been anticipating her death for the past two weeks when she entered hospice care, but it still came as a shock and I am very upset. She was a retired teacher and still taught the medically disabled in their homes up until 2 months ago. Her husband Jack of 46 years, two daughters, Amy and Ann, a mentally disabled sister whom she cared for and several grandchildren survived her.

Pam had battled breast cancer for 5 years and it recently spread to her brain where she developed an inoperable tumor maybe 2 months ago. She had undergone a drastic treatment measure recently that involved the installation of a port/shunt in her head to deliver chemotherapy drugs directly to the brain. It was extremely dangerous. She had recently developed a blood clot and died likely from complications related to treatment. It just happened Monday and the information is still unclear because I think it was more sudden. Pam's husband Charlie and her two children, both college students, one bipolar and the other pregnant, survive her.

Like with most deaths I have experienced in my short life, I first was shocked and emotionless for a little while and then let loose and cried and thought about how unfair and tragic this was. I don't have the crutch of religious belief or a complete and solid idea of what the "afterlife" involves. I just can't really relate to that whole notion when it's so forced like these were. These women were killed. They lost the battle. They fought for the good fight for years and years, and lost to a horrible and debilitating disease that will affect 1 in 4 Americans in their lifetime. They were robbed of everything they had ahead of them and plucked from their normal healthy active lives, jobs and families and are gone forever.

It's just so frustrating and revealing about the lives we live. On one hand you want to treasure every moment and not worry about the possibilities of everything that could go tragically wrong, but the next you find yourself walking on eggshells and worrying about things that don't matter at all in the big scheme of things. I think about my own survival and what I face in the long life I plan to live. Just like so many of the feelings and thoughts that we have all experienced throughout this cancer, it just makes you think and face things that are really hard.

That being said, it's back to camp for me tomorrow morning. I am anxious to be back and I think it's best for me to be there right now. I am getting labs in a week and a half just to make sure things are continuing to go up but other than that I will check back with you later this summer.

Headed to camp

2006-07-02T14:30:00.000-07:00

Well it's been about a month since I got out on June 6th and the transplant stay couldn't be further from my mind. I have been back to work at The Center and a bit at RPA this past week or two and I am leaving for camp tomorrow. I will be working there for the rest of the summer as a program co-director. I have been packing (and purging in the process) and my truck is filled to the brim with all kinds of junk for the next 5 weeks. I have a packing disease--tend to follow the "well I might need it" philosophy and just kind of throw everything in there. Oh well. I just can't wait to go.

The only lingering symptom from the transplant and high-dose chemotherapy is the compromised hearing. Doesn't seem to have improved at all and I am going to schedule an audiology appointment for when I get back in mid-August. My rash is pretty much gone...except for a little discoloration. No sign of any hair yet, but I can feel it gettin ready--maybe by the time I see my parents it will have started growing back in. My energy level really feels up, it's still not 100 percent of course, nowhere near probably, but I still feel like I can contribute at camp in a very meaningful way. Some gastrointestinal side effects I was having have cleared up with an antibiotic and a medication called Flagil which I will continue for a week's time.

Tomorrow I am going down to the treatment center first thing in the morning to get labs and a dressing change. No, my central line is still not out. It's frustrating but I have to remember that I have been speeding through this recovery process real fast. It's typical (esp. for me) for the platelet count to crawl up slowly after high-dose chemo like I had. Slower for some than others, but I just have a tiny bit to to go and then they can pull my line. I did not have to get a transfusion last week, so that is a first step in the right direction. Hopefully that will continue but it may not. I have made preliminary arrangements to get labs down near camp at a doctor's office and plan on coming back to get my catheter pulled as soon as my body is ready. It will be much easier living down there without it, but I am not willing to sit around and wait for my platelets to come up. It's not that far and I am ready to get down there and start working.

The only reason my plans would change is if my platelets are up tomorrow and they can either squeeze me in ideally to pull the central line sometime Monday or less ideally after the holiday this week. If they can, it is worth staying and not having to worry about it down at camp. Talk to everybody in August. Have a relaxing and productive summer.

a little restless

2006-06-24T08:24:00.000-07:00

It's almost been a month since my transplant and I am feeling good. I've been quite restless all week, tired of not having a regular schedule and ready for a change of scenery. This makes me even more excited to get down to camp and forget about this life for a little while. I've been continuing to walk--I'm up to the equivalent of 3 miles now...but I've been varying my routine a bit, getting on the elliptical machine and doing some timed stuff because the track got boring. So, I've increased my exercise by mixing it up a little bit which is good. I've also been back to work at The Center. It felt good to earn some money but it was exhausting at the same time. I think I need to stick to shorter shifts more frequently, kind of like my eating--smaller meals more often. I think I might delay going back to work at RPA until I can be there more consistently after camp.

My grandma is here visiting from Brooklyn for 10 days and my uncle Ken is coming from San Diego for the last 5 right before the July 4th holiday. Shortly after they leave I will head down to camp. It's been really good to see my grandma--I think she benefits so much from seeing me doing well and being active. Granny is 83 and still healthy and active so I think this whole experience has been so difficult for her. It's been great to have her around spoiling me and the timing couldn't be better cause I have no money right now since I haven't been working in so long!

Most of my lingering symptoms from the high-dose chemotherapy and transplant have gone away. The only things really left is the decreased hearing and ringing in my ears. The nurse practitioner has said I can go ahead and see an audiologist to get an idea of what this problem is all about. I guess I need to follow up about that next week. No sign of any hair yet...still bald all over, but it will come.

This coming week I have my first visit back with my oncologist Dr. Linette and JoAnn, his coordinator. I really like them so I am excited to be back under their care. I will get labs on Wednesday morning to see if my platelets are up enough for me to get the catheter pulled...if so, that will happen Thursday. I really hope it is time, otherwise that could end up delaying me getting down to camp. I'm not going anywhere until it's gone. Other than that, I am working a bit this week and plan on enjoying time with the family visiting until the holiday weekend.

Until then, hope everybody is having a busy but relaxing summer.

ahh, summer.

2006-06-15T18:57:00.000-07:00

I guess it's been about 9 or 10 days since I got out of the hospital but it really seems like a million years ago already. I tend to focus on all the things that haven't gotten better yet and aren't quite back to "normal" but in reality, sitting down to write this blog, I realize I have made tremendous progress in a very short period of time. I have not missed a day of walking 2 miles and I plan to bump that up to 3 miles a day next week. All of my symptoms have gotten a lot better although it is hard for me to tell on some things cause I am still living with them but my mom keeps my realistic.

The skin rash on my torso is still there--not really a rash anymore, but more of just dry flaky skin that is leftover. I'm still caking on the moisturizer and I think it's helping. It just needs a little more time (and patience!) and it should be gone in a week. The stickiness around my eyes has cleared up and my nose is running less. I had to get platelets again on Tuesday but hopefully those will start staying up on their own soon. My hearing is really not improving, but they said to give it another month and then we would look into seeing an audiologist and go from there. I am not too worried about it, it's not worth worrying about cause I can't do much about it. That's my philosophy with that, among other things. So symptomaticly, I am clearing up from the big transplant stay. I think the walking has really helped to get things moving.

I had my first follow-up visit with the nurse practitioner in the stem cell transplant division. I really like this guy, very professional and a great communicator--unlike my transplant physician who I have not heard of or seen in weeks, despite having just completed this major procedure. That's another story though. My follow-up went well. He answered a lot of my questions and told us why he couldn't answer some of the big ones. I was satisfied with his answers and left feeling really good about my progress and tolerance for all the harsh treatment that I have been through. He really brought me down to earth and reminded me that my body has been assaulted dramatically--that the progress I've made is remarkable and I should be proud and patient at the same time. The best news I received was that my catheter can come out very soon--as soon as next week. It just depends on when my platelets decide to stay up. The magic number is 50. My platelets have to get to 50 and then they can yank that sucker out. They scheduled it for Tuesday so here's for hoping, but realistically I don''t see it happening that soon. Once I do, I can swim in a pool and shower without the huge hassle of making a waterproof dressing for my chest. I am very excited to get rid of this physical symbol of cancer treatment and transplant. It will really be a weight off my shoulders.

I have really been enjoying my time off since the hospital stay. It really feels like summer around here with my brother home from school and my mom home from work. Besides walking, I have been going out to lunch a lot--my appetite is back, yes, but not my taste buds all the way. I have been spending a lot of time with friends and looking forward to my summer plans. I have decided since I am making such a fast recovery that I am going to start working (very) part-time at The Center and RPA next week. After a few weeks of that I plan to get back down to camp. Then when I get back in August, go back to working at The Center and RPA and wait for my hair to grow back and move on from there. It feels so good to be so forward-thinking. Not to be corny, but it honestly feels like I have the whole world in front of me. I can do whatever I want and there is no chemotherapy or cancer in the way to stop me. It sounds silly but that's the reality of it. I am finished with that phase of my life and moving on.

Recovery/readjusting

2006-06-09T14:37:00.000-07:00

I've been meaning to sit down and write this for a while. I have now been out of the hospital for 4 days. Every day has been better than the last...steady improvement although sometimes it's hard to tell. I have seen a lot of friends and some family and talked to even more. Everybody is so congratulatory and relieved at the same time. It's an amazing feeling and I just feel really lucky and fortunate. I feel like I have been blessed with a gift for communicating and that has made this difficult process a little bit easier for everyone. Hang tight if it takes me a few days to return your email or phone call, I am tryin!

Tuesday I was in shock and just stayed around the house and laid in my bed just appreciating life. Wednesday I was still a little shocked and stayed in bed for hours. That morning I got platelets at the cancer center. I got up to eat and go to the bathroom but I left me stuff all over the place and just chilled. That night I walked my first 2 miles out of the hospital. I never missed a day! I went to The Center of Clayton (my gym) and did my 20 laps on the indoor track. My friend Jill met me at the gym and walked 15 of them with me. So nice. It really felt amazing and I hope not to miss a day during this recovery process. I want to build on what I am doing and I really think it will catapult me forward in this recovery journey. Thursday I had a big day. I woke up and put away all my stuff. Two huge suitcases full of stuff. It took me 3 hours and what I thought was all my energy. After that I showered for the first time since the hospital. It felt amazing. I cleaned off 3 weeks of hospital disgust. Then my friend Gavi and I went out to lunch with my other friends Caroline, Carol and Tiffany. I ate my whole lunch! That's a big deal for me. Then I went to the mall and to Northwest Coffee. I was ready for a nap. So then that night, I went for my walk at The Center. Got another 20 laps in. And today I went to the hospital to get my blood counts checked again early this morning. I didn't need any blood products which was good. My white count did go down though, which they said was normal and will start coming up soon.

As far as my symptoms go, I still got a bunch of stuff goin on. Rash is healing but is dry and itchy. Still can't taste much, but that is to be expected. I am tired, which is also normal, but am trying to take it easy this weekend. I am pale as a ghost so I am staying out of the sun. My hearing is still marginal--I am freaked out about it, but am trying to remain hopeful until a few more weeks go by. Today it seems like the hearing is trying to restore itself in my left ear. My right ear is really ringing. I have been keeping good records of my temp which has been normal and my fluids intake. 64 ounces every day! Otherwise I am feeling good, just a little exhausted. I can't wait to see where I am 2 weeks from Tuesday. Hopefully lots better.

Tonight I am going out to dinner with my family at Olympia and then going to walk my 2 miles at the gym.

GOING HOME!!!!! IT'S OVER.

2006-06-06T10:32:00.000-07:00

It's Day +12 and it's all over. I am going home. I am overwhelmed with emotion as I write this, it has taken 24 hours for me to come to the full realization that I am being discharged and leaving the hospital. I don't even remember the last 3 days really--it's all a blur. But everything just kept getting better and my counts came up fast. For a day they stayed at 0.2, then they went to 0.7, then last night they came up to 1.3. My symptoms are slowly disappearing but I cannot say that anything is completely gone. There is still a lot of recovery to go but I am completely ecstatic. I am balling as I write this. I am just so happy to be going home.

From the top down: my scalp is barren and dry. It's flaky and I cannot wait to see the first hints of hair up there which should happen within a month. The skin on my face is dry but some of my facial hair never went away even through all this nasty chemo. Says something about those hair follicles!! I still have the rash from my neck and arms down to my upper thighs. It's improving daily and should be gone in a week. It doesn't itch, but it just looks nasty and my skin is very dry. It's my least favorite side effect ever from any of this treatment. My skin lacerations around my catheter are healing nicely. There are just two wounds left really and a lot of dry flaky skin. If all goes well, I will get my catheter taken out in 2 weeks. That will be a huge celebration in itself because it has been there since February and is a major hassle to shower with because I have to keep it dry. Not to mention it hangs off my chest all day and it's summer now so that won't work. Nope. My mouth is slowly healing--there are still sores on my tongue and I have NO TASTE whatsoever. I am really having trouble eating and it stresses me out so much. I want to go out and celebrate with food but it's just not worth it at this point. Nothing tastes right and half of it comes right back up. I'm giving myself 2 weeks to get back to normal with that. My weight has held steady so far around 130.

Two weeks seems to be the magic number for this thing. For the next two weeks at home I have to be really careful about everything--the dog, washing my hands, all the normal stuff you would think of. It will just be nice to be home. For the next two weeks I will be coming down here to the hospital for blood transfusions and doctor's follow-ups. Once my counts come up significantly those visits will drop off. I will be passed back to the care of my oncologist and after a little while there to my neurosurgeon for quarterly and eventually bi-annual follow up scans. 100 days after my transplant date, I will have a bone marrow biopsy to see if there is any cancer left in there. I swear if anything lived through this chemo, it would be a complete surprise cause this was some crazy strong shit!

So I guess that's it. I'm going home in the next few hours. Discharge always takes forever in the hospital. But all I got is time. I am really happy this is all over. I am waiting to see my doctor Friday to ask him about the "R" word. I guess there is really no way to know until after some scans and the biopsy which won't happen until all the scar tissue from the chemo has had time to heal. But its enough knowing that I got through this. It was 3 weeks of hell. I am finished with cancer forever.

Continue to check the blog over the coming weeks for updates on my recovery and the coming months as I assimilate back into reality.

Day +8

2006-06-03T09:49:00.000-07:00

I think the worst is over. After 3 days of my counts at rock bottom (days 3-5), they showed a slight increase on day 6 and doubled on day 7. Now when I say doubled, I mean they went from 0.1 to 0.2, but STILL, it's a remarkable step in this long process. These can still dip any day now, but once they start going up more significantly, it will be an exponential growth. The counts that are most important to my healthy recovery (and going home) are the WBCs and the ANC, or absolute neutrofill count. These are the things that create immunity and prevent the body from infection--especially the kind of infectious symptoms I've been describing in previous posts like the mouth and GI tract disturbances and the skin disturbances.

So, that being said, I am feeling better. My mouth and throat are markedly better. There's still visible sores, but yesterday was the first day I was able to eat solid foods in several days. Joel made me angel hair (yes, he's home!) and brought it and I ate that with some chicken broth. Later I ate a smoothie from my fave St. Louis Smoothie that my friend Dave brought, My daily calorie intake is down around 500 a day which is real bad. I would normally be around 1800 under different circumstances. But when you throat is swollen shut (almost) and you have open sores all over your mouth, eating is just not a priority. The nurses and docs don't make a big deal about it at all. They say the body can go many days with no food at all. I haven't gone a day without eating, just had a few when all I could do were liquids.

I am back to walking a mile after each meal. There were a few days last weekend where I could only push myself to do like five laps. My skin lacerations from the tape are healing nicely. I still have to wear this jerry-rigged gauze dressing that has to be changed every single day. If they had thought ahead about this Thiotepa, this would not be the case, but now whatryagonnado? The torn-off skin is healing up which I was worried about at first, but it still looks disgusting.

The hardest thing right now is my rash. The docs and nurses have been guessing for days on what it actually is from and the consensus now is that it's from one of the antibiotics I am on as a precaution for infections. Well that sucks. I don't want to be on a medication that causes a lot of itching and pain. Also it's spread and just looks completely nauseating. The one good part is that it seems to have disappeared from my neck and head and is moving south. yeah. So they've given me all these creams and ointments and I use them occasionally. I am not a big fan of putting foreign stuff on my skin because it's so sensitive and once the cream or powder is on, it's sometimes hard to get off. Mostly the rash doesn't itch enough to warrant any treatment, it's just gotta go because I can't be leaving the hospital with a rash from my groin to my neck. Who knew getting a stem cell transplant would be a lesson in chemical dermatology?

So I guess in summary today, I am doing better. Feeling more and more like that first week and less and less like this past second week. The nurses say once my counts begin to rise, they will grow exponentially. Since I bottomed out a couple days earlier than expected, I fully expect to make my discharge goal of Day +13 or sooner which would put us at June 7th, next Wednesday. They also say that once counts go up, symptoms start to heal and go away real quickly. Like there is a 24-hour period where a LOT of change occurs.

So I am looking forward to all that, but being careful not to get too attached to the idea of such an on-time release cause I know how this place operates and I know anything can still happen. The main things I need to focus on right now are:

Staying on top of my symptoms and asking the nurses for help when I need it.
Keep walking--I'm back to 17 laps/1 mile about twice a day now, so get that back to 3x a day.
Keep eating--nothing tastes good or feels right in my mouth and it's nauseating. But I just have to try my hardest.
Stay hydrated-one of the 3 basic criteria for getting out of here is that you're drinking a liter and a half per day.
Avoid infection at all costs.

I CANNOT wait to get out. It feels so close right now and symbolizes so many things.

Day +4

2006-05-29T14:53:00.000-07:00

Well I am truly truly IN this thing right now. Right in the thick of it. My counts dropped down to 0.0--both my WBCs and my ANC (absolute nuetrophil count) yesterday and I am SWIMMING in side effects and pain right now. I did not return any phone calls yesterday or yet today, and the only people that have really been here are my parents and Nana. I have been sleeping incessantly throughout the day and all night.

All of this is normal and to be expected for this procedure, but it is still the hardest stuff I have ever been through. The mouth soreness feels like all your gums are raw. There are two official names for it--stomatitis and mucousitis. There can also be some Thursh mixed in there, which is where the skin on the inside of the mouth forms white spots and peels away. I don't have much of that they say, thank god. But the stomatitis goes all the way down the digestive and GI tract. It's all sore and swollen and its made it extremely difficult to eat. I have lost all appetite, and its a good thing because otherwise I would be starving. I can't eat anything except Ensure and smoothies and baby food and even getting and keeping those liquids down has been a major challenge. I have given up on all regular food and my eating is severely limited. My mouth is producing an excess of mucuous and I have 3 mouth rinses/swallows to use to ease the symptoms of the Stomatitis, but I have found the most useful thing was the suction gun my night nurse gave me yesterday. I just stick it in my mouth and everything is gone.

Next I have the rash--Dr. Dipersio doesn't think it's from the Thiotepa, but from the transplant itself. THe rash is really the least of my worries. It doesn't really itch, and seems to be going away starting today. It's all over my stomach, back, neck, shoulders and forehead. They've given me 2 different lotions, one of which I've used--the Sarna--to relieve itching, but like I said it hasn't been a big deal. It's just really bad looking.

The tape lacerations around my catheter dressing are healing. There is still a lot of topical pain there, feels like a burn. Some of the wounds have not dried out and are still in the oozy stage where it just plain hurts. They look like a really bad sunburn but the ones that are dried don't hurt at all. The only ones that are really bad are the lacerations on the far right and we are still doing daily dressing changes (no tape!) and putting a topical antibiotic on those. The most annoying part is that my catheter now requires a tape-free dressing that has to wrap all around my chest which is hot and tight and just a real bother.

Other than that I've been developing a few neutropenic fevers since my counts dropped off, but nothing too high. I'm on a million medications for this or that, I can't even keep track and I am usually really good at that. The nurses just bring medication all day and all night and a lot of it is just part of their protocols that everyone gets. But I'm sure they are all helping me and I know some are like the Morphine I am taking for my skin lacerations. I'm also on a growth factor shot that will help bring my white counts up faster.

So timeline wise, I am right on schedule. Yesterday was the first really bad day and I should have about 5 or 6 more of those before my counts start going up and the symptoms start to go away. So...let's see that will probably be around Friday or Saturday. Until then, I will probably not feel like visitors cause it hurts to talk. My hearing is also not up to par right now either. Yeah, hoping that goes away.

So that's what's going on with me. I am pushing through it but its hard and very uncomfortable. 6 more days of this, I can do it.

Day +2

2006-05-27T06:17:00.000-07:00

At least we're counting up now. I had a tough time sleeping last night. Yesterday, we discovered some pretty bad skin lacerations underneath my catheter dressing which sits on the right side of my chest. What happened was that the dressing had to get changed so much during those three days I was on Thiotepa. I was showering three times a day for about three days, and the nurses were changing the dressing each time, so that is nine rips off the skin of this strong adhesive tape. Yesterday it hurt SO bad. It felt like a burn because there's basically a layer of skin missing around the top and right side of my dressing.

What we ended up deciding to do was eliminate any tape in the dressing to prevent ripping off any more of my skin. We changed to an all-gauze dressing, and not even the regular kind of gauze because we tried that once and it was getting stuck in the oozing skin. I asked for some topical antibiotic to prevent infection (especially since these injuries are super close to my catheter site which is REALLY dangerous if it gets infected). So that's all over me now, and I have some special no-stick gauze dressing and a wrap around my upper chest to keep it in place. It was almost impossible to get comfortable to sleep with, but the good news is the whole thing is feeling better today. I am just praying this thing heals before my counts drop all the way down to zero because basically what that means is that I have no immune system to fight this and it may delay me getting out of here which, of course, is my ultimate goal.

So, I hope nobody was too grossed out by that. I had to write about it though because not only am I using this blog to keep you informed, but it's my journal, my therapy and my record of all these horrible things that I will never have to go through again. Leading us to our next topic of discussion, my rash. I've developed an itchy rash that they think is related to the Thiotepa on my stomach and back areas. It's really itchy and Benedryl would probably help but it knocks me out so hardcore that I am waiting to take some until I eat breakfast. They've got a lot of medications that I can take and have tried to help alleviate these painful and annoying symptoms but it's like half the time the medication is worse than the ailment. Morphine is not that fun people. So I am waiting for my day nurse to show her face before I ask about this rash because it really started bugging me during the night.

My white count is down to 1.2, so I am getting close to that bottoming out point. I am actually looking forward to it in a strange way because then I can just be sick, lay here for a few days and be miserable and drink Ensure and hope that my numbers start coming up around day +9. It's the turning point I need-the next hump to crawl over.

My hearing is still the same, a lot of weird tones and ringing and I can't hear as well but it's not the acute bother that I am worried about, it's the long term. Dr. DiPersio seems to think if it's not getting worse (which I don't think it is) then it will eventually get better. All we can do is wait and see. When I get out, I will see a ENT doctor or possibly just an audiologist to assess where my hearing is at that point. Scary, but unfortunately I have worse things to worry about right now.

I am exhausted today cause I really didn't sleep much last night. But I am about to eat some breakfast and I want to try walking at least a little bit so I can just get out of this bed and feel like I've done something. Check with you in a couple days.

Transplant complete, day zero is here

2006-05-25T16:25:00.000-07:00

Today I had my transplant. As all the nurses and doctors said, it was very anticlimactic. 2.2 million stem cells were back in my body through my IV catheter in about 30 minutes and the whole thing from start to finished lasted about an hour. There were two nurses who stayed in the room while it was going on. Despite four premeds--Zofran, Benedryl, Decadron, and Ativan I still managed to vomit once real big. But it was contained and I felt fine afterwards. Sorry to share--I just like to be as realistic as I can on this thing. After that, I just fell asleep from the premeds--Benedryl always knocks me out and you get it anytime you get any blood product--and woke up at 3 for lunch.

Now I'm feeling fine just catching up on email and trying to stay busy. The day went faster since I slept through some of it and my mom is coming back tonight with Chinese food so I am excited about that. Dad is busy trying to finish up Joel and my bathroom renovation before Joel gets home a week from today. Yes, SO excited.

The one annoying side effect I am having is directly related to the Carboplatin. I have some hearing loss--possibly permanent, likely temporary but it is the most violating thing in the world. I can't hear right dammit. When people talk I have to ask them to repeat and there is a constant ringing in my ears that is driving me nuts. I can't hear subtle things like footsteps and whispers. Cross your fingers that this will go away when I get further from this chemo.

The rest of this stay will involve a) getting sick and b) getting better. My blood counts have been dropping steadily since the end of chemo and are expected to bottom-out at 0.0 around day 4 or 5. They they will stay that way for a few days and begin coming up again hopefully around day 9 or 10. My goal to get out of here is day 12 or 13 like I said in the last post...from nurse Jason's predictions. During the time when my counts are lowest, I may not be able to leave the room and my mouth and whole GI tract might be hurting real bad. Those are the main things that other patients and nurses have mentioned, and the neutropenic fevers which basically require you to stay in bed and go on antibiotics.

But you know, none of this is yet, I still have a few days and so I am just pluggin along, doing my mile laps after each meal, eating what I can and what people are kind enough to bring me, and trying to stay busy. Thanks for everybody's positive comments and gifts and cards and visits. It all helps. 12 days...mark your calendars, I am out of here.

Chemotherapy finished, Day -2

2006-05-23T07:42:00.000-07:00

Well I am finished with chemotherapy forever. That 'forever' part is assuming I never have to go through this cancer bullshit again, but nonetheless I am done. Cooked. Literally...I;m starting to develop some sore spots on my skin where the Thiotepa is excreting. Nothing serious, but when my counts drop they could turn nasty.

The thiotepa cleansing and heavy duty gown/gloves regimen continues today through 12:30. At that point I can change back into my normal clothes, the room will be cleaned (I hope), no more showers 3 times a day like the last 3 days and just more comfortable. These little things make a big difference when you are sitting here all day. The other big thing I get to stop is my 24/7 IV fluid drip. I've been connected to an IV pole almost constantly since I arrived here a week ago and now I get a little break from it since I am no longer receiving chemo.

Physically I would say I'm at about 95% right now. I have the mild beginnings of some thrush, which is a mouth infection common with chemotherapy. I have irritation on parts of my skin from the Thiotepa excreting through it--mainly near my armpits which is also near where they've had to constantly change my dressing before and after every shower. So, those are uncomfortable, but nothing too major. The nurses say that depending on a number of individual factors, most patients; blood counts start to plummet right after the transplant (Thursday). This can lead to all the nasty side effects like neutropenic fevers, mouth sores, flu-like symptoms, etc. And all those are what I am trying to avoid or get taken care of as fast as possible so I can get out of this joint. My nurse last night, a knowledgeable guy named Jason, told me he predicts I will be discharged between days 10 and 12 which would be awesome. That's 10-12 days from Thursday, making it between June 4 and June 6. Here's for hoping.

My main thing right now is staying occupied. I am still doing my 17 laps/1 mile after each meal which is good. I am still eating pretty well, normal portions and a balanced diet. I am just going CRAZY sitting in this room all day!!! Yesterday I had a bit of an anxiety attack--couldn't get my legs to stop shaking and they gave me some meds for it. But the reality is I still have at least 2 weeks in here unless I am very lucky so I need to hunker down and start watching the dozen or so DVDs I have, listening to the bazillion-hour Harry Potter audiobook on my computer, reading my new book, a short stories collection by Augusten Burroughs and just finding other various ways to keep me busy. It's so hard for me.

Visitors have been great. I am trying to squeeze as many in as possible before I get sick and it would be better if people didn't come. David, Mercedes, and Erin were all here yesterday--some of my bestest friends. And Carol is coming this morning. Our family friend Mary Corcoran is bringing me lunch today and my parents will of course be here later on.

Going nuts in here, but trying to focus on the big picture.

Day -4

2006-05-21T19:24:00.000-07:00

Hello all. Tonight might be a really short post cause I am tired, but I am still hangin tough. No major side effects from the chemotherapy at all yet, which is to be expected. Depending on how sick I get, It will likely start in about two days or later. I had some anxiety issues today that were probably caused my one of my antinausea medicines believe it or not. My legs wouldn't stop shaking and I was just feeling crazy. But it was over in a few hours and I am feeling better tonight.

I had a few visitors today--Sam and Chris Schmiz stopped by for an hour and then my friend Carly from Mizzou tonight. It was a great distraction to see them and catch up. I am lining up some more visitors for tomorrow so I can have some human interaction to look forward to.

The Thiotepa precautions have been really hard. I am having to shower 3 times a day, completely change my clothing, and everyone that comes into my room must where chemotherapy gowns and gloves. It's a hassle, but it's all to be safe. The drug excretes through the skin, so basically my body is toxic right now. These precautionary steps will last through Wednesday even though tomorrow is my LAST CHEMOTHERAPY treatment. I am really looking forward to my transplant Thursday but dreading when my blood counts drop and I might get sick.

Thanks for keeping up with my blog. It means a lot to me!

Day -6

2006-05-19T13:44:00.000-07:00

Two doses of chemotherapy down, four to go. Still managing to keep myself relatively occupied. The best thing I've been able to do so far is walk. I have walked a mile after each meal, 17 times around this small floor. Its more exercise than I've gotten in the past 6 months, but it doesn't feel difficult. It feels right, and I want to be able to keep doing it for as long as I can in here and then do what I can even when I am at my lowest. Like I said in previous posts, the key to getting through this in the best possible way is to keep moving and keep eating! Sounds easy enough, eh?

Its too early to be feeling any effects from the chemotherapy. My appetite is still good and I've been tolerating the first few doses well. Tonight around 10 o'clock I will get my last dose of Carboplatin. Then tomorrow morning at 9 am I will start the next two chemo drugs, called Thiotepa and Etoposide. The Etoposide I've had--not in this mega-high dose, but still I know what to expect. The Thiotepa is rarely given to adults. I am nervous about it. The medication excretes through the skin, thus requiring constant attention to get it off so as not to burn me. So, the regimen requires 3 showers a day and my linens and clothing must be changed at those times as well. Yeah, intense. I am nervous about this drug, but the doctors have REALLY downplayed this side effect so that makes me less frantic. The nurses still want to follow the cleansing procedures, and I am definitely going to go along with that precaution. So I guess we'll just have to wait and see.

Nana has been here the last 2 days, spending time with me during the morning and lunch hour. Our family friend Mary has also been in, brought me a BBQ lunch today from down the street. David and Andrew came with dinner yesterday and of course my parents have been here each day and night. And my second mom Roberta...she brought food as well. It's been nice having company but nobody is here 24/7 so I am relying on many different things to stay occupied. I get the daily newspaper, got a bunch of DVDs from Dave and Drew, got my computer of course (Andrew hooked up my wireless Internet!!) and plenty of magazines and books. I haven't yet started my Harry Potter audiobook, but plan to soon.

Other than that, can't really think of much. Just been pluggin along.

My first day

2006-05-18T08:00:00.000-07:00

I am finally here. In the hospital for my stem cell transplant after what seems like, and has been months of waiting and treatment. It feels good to be making progress and moving forward, but at the same time of course I am nervous and anticipatory regarding this long-term stay of possibly a month. I feel 100% right now though. I arrived yesterday after waiting all day at home. My nurse coordinator gave me an admitting telephone number to call to see if/when there would be a bed ready. Told to start calling at 10 am, the bed finally was ready after a discharge of another patient around 5. It was nice to wait at home.be able to do things and spend time with friends. I got one last good meal with Dave. So we hustled down here to stay on schedule with my chemotherapy when we got the call. The staff has been great, although I haven't needed much attention yet. The room is nice, but small. It's a little bit more like a small hotel room than a hospital room in some ways (+/- some obvious things).

So far I have accomplished the following:
1. Got here, got settled and admitted/ "assessed," ate some dinner.
2. Started some IV fluids to prepare me for the chemotherapy and make sure I stay hydrated.
3. Received some premedications for my chemotherapy including an anti-emetic called Zofran, a stomach medication called Pepcid and a steroid to make it all work better and quicker, called Dexamethasone. All very common with this.
4. Then I got my first dose of chemotherapy at 10:30 pm, Carboplatin administered over IV 2 hours. I haven't had any side effects yet, still feeling pretty good.

Since then I've pretty much been waiting around keeping busy. This morning I ate a decent breakfast and then walked 17 LAPS (!!), a mile, around the floor. It felt really good to be able to do that, and I have managed to stay out of bed since 7:30 this morning keeping busy with the newspaper and my computer. So things are good today, this second day of my stay. Today is day -7. My nana is bringing me lunch. I will get chemotherapy again tonight at 10 pm, the same drug and we'll go from there. Seven days until transplant.

Keep on keepin on.

Big day approaching

2006-05-13T15:09:00.000-07:00

Since my last post I have been enjoying a "normal" week off from treatment and sickness. I worked 4 days this week, got a lot accomplished and had some fun in between. The weather has been cool and rainy, but it hasn't stopped me from being out and about. I went out Wednesday for $1 PBRs at Saleem's with the crew from my Mizzou class. That was fun catching up.

This weekend I have been spending a lot of time with friends in preparation for my transplant admission which is now scheduled for this Wednesday, May 17, 2006 at 10 am. I am ready for this big date physically and mentally. I want to get in there and get it over with as soon as I can so I can move on with life. I am getting nervous about the high-dose chemotherapy that I will get my first 6 days in the hospital. To review, the total time of the hospital stay is 3 to 4 weeks. The first 6 days are chemotherapy--IV Carboplatin, Thiotepa, and Etoposide/VP-16. Then I get a 2-day reprieve, but stay hospitalized. After the two days of recovery for my body, I get my stem cells back. This day is considered the day of the transplant and it is said to be day "zero." The nurses and hospital staff count down until your transplant, and then up after it. So for example, "day four" is 4 days after my transplant.

Speaking to nurses and other staff about stem cell transplants, they have said the fastest a patient has been released to their knowledge is 12 days after transplant, or "day 12." They said the key to being discharged is to keep moving and keep eating. I am planning to keep these suggestions in mind carefully as I go through this procedure and to push myself to get up and keep the blood flowing even if I don't feel like it. The nurses said the patient that got released after just 12 days was young and walked the halls every day, so that's what I plant to do. So 12 days after the transplant would be 20 days after being admitted, almost 3 weeks. So I really plan to get in there and do this thing as quickly and painlessly as I can and move forward.

I am ready to go in--I have all the Harry Potter audiobooks stored away on my computer, got my laptop of course, and will be packing lots of homey things to keep my comfortable while I am in the hospital for so long. For visitors, I will be on the 5900 floor of the Schoenberg Tower, Barnes-Jewish Hospital's North Campus. Always call before visiting to make sure I am up for it (cell phone 314-974-4603 or the room # which I will post when I get it). Parking is best found in the North Garage at Euclid and Parkview. Enter through the Center for Advanced Medicine/Siteman Cancer Center, take the Schoenberg elevators to the 5th floor and then follow the signs to my room. Wash your hands real good and don't come if you've been sick!

I am going to the Cardinal's game tonight so I gotta jet...getting picked up as we speak. But I will be online from the hospital (it's dial-up, but nonetheless). Wish me luck and I will see you all on the other side...remission.

I got sick

2006-05-05T15:11:00.000-07:00

I started feeling ill Friday evening, had a fever when I went to bed that night and the night after, but didn't choose to call anybody until I started feeling bad Sunday as well and it didn't seem to be going away. I emailed my nurse coordinator with my symptoms--fever around 101.5, chills, rigors (shakes) and general ickiness. She called me back first thing Monday morning and said this sounded pretty serious and that I had to be admitted immediately. She said I should have called the weekend line earlier.

So, I have been in the hospital since Monday with an ambiguous infection (they don't know where the infection is originating, fevers and chills/rigors. All the blood cultures and chest x-rays and blood tests have come back negative so they are not treating something specific. The fevers are cyclical, not constant, and have recently been occurring in the evening. They have me on two antibiotics, Vancomyacin and Imipenin (sp!?) which I get via IV twice daily. My white blood count has slowly started going up so that is helping to fight off the infection too. I am mainly just so frustrated that I have been in here for a week unexpectedly. It's hard for me to be here isolated and cut-off. I finally just got this dial-up connection yesterday which has been great for catching up with things online. The floor I am on is full of longer-term patients, which is depressing. The nurses have all been incredibly nice and helpful and professional. The doctors seem to be trying their best to get me better and home, but it is just really discouraging to know that my body has taken this long to start making any progress.

This is the longest I have ever been in the hospital. My nose is so dry from the air and I have not left this floor in 5 days. They really discourage that when you are at risk for infection. I have managed to walk around the hallways almost every day and try to stay out of bed unless I am sleeping. My room is excellent--awesome view of the Central West End, lots of space, refrigerator and all the bells & whistles. I got this Internet connection on my laptop by uploading one of those free AOL discs that they gave me at the nursing station. It's dial-up but hey it's better than nothin. I got to update the blog and shuffle through 50 emails and everyone knows that feels good and takes up some time. I am hangin in there--surprisingly only had one or two major breakdowns pull-out-my-hair scream "whyyy am I here!!!?" :)

In order to go home, I have to go 24 hours with no fevers over 100.5. My white counts have risen to a reasonable level. This could be this weekend--cross your fingers and pray for me because I really need a break from this place bad. My friends are out celebrating Cinco de Mayo. I'm watching The Breakfast Club in 6946 at Barnes. Could be worse I guess! My transplant has been delayed because of this thing--I need a break from the hospital before my long-term sentence. I am ready to get it over with but I can't do it right away.

The Walk

2006-05-05T13:01:00.000-07:00

Okay, I've done it again, not posted for over 2 weeks and hopefully people are still checking this and reading it. I am going to do two posts, on two very distinct happenings in my cancer experience cause they are so unrelated and different that they don't really deserve to be part of the same blog post.

The Cancer Survivorship Walk turned out really well last Saturday, April 29th. It was rainy and cold, so we were really nervous that our team would not show up in the numbers we had committed. But everyone really came through. We had a huge turnout for Team Jason--over 104 people walked for me and ultimately for the organization, The Wellness Community of Greater St. Louis. Our team's official photographer has posted pictures on her website www.samschmiz.com/team_jason. More will be added soon. We definitely had the largest team at the event and the Team Jason T-shirts helped for us to stand out along the path. If it had been nice out, the whole thing would have been amazing, but the rain made it a little rushed. Our team's donations are still rolling in (not due officially until May 15) but so far we have raised over $5,000.

Thanks so much for everyone that came out. There were so many unexpected faces, I don't even know how to go about thanking people. But it felt great for me and I am so glad I was able to be there. Then...

Feeling great

2006-04-20T12:47:00.000-07:00

It's a beautiful spring day and I am feeling great. Just spent 2 days in the hospital getting my last two chemotherapy treatments for this 4th cycle. Honestly, I am feeling so good right now it is really hard to believe that I have just been through 12 days of toxic poison flowing through my body killing off all my cells. I have never been more of a believer in the strength and power of one's mental state and positivity. The weather and season, my friends and family, upcoming events--all make a huge difference in how I feel physically. It's like my body just says "nope, I am not going to feel sick."

That being said, this past hospital stay really fired me up. It started off AWFUL. We arrived at 9:30 to admitting and did not end up starting chemotherapy until 4 p.m. When I finally started chemotherapy, due to a room change, I sat in the waiting room with all my stuff and my IV pole pumping chemo into my chest while all these random people sat around and stared at me. There was a mistake--one nurse told me my new room was ready, and when I got down there it wasn't clean at all, so then they had already started cleaning my old room and there was nowhere else to go--people EVERYWHERE. It was not okay. I ended up staying in the third room I was assigned and it was just PACKED on the oncology floor--38 patients instead of the ~25 usually there. A sad state of affairs, truly.

The system is so broken and just so bureaucratic. It's way too big to operate with any efficiency and every little step takes absolutely way longer than it should. It's not about the individuals--I had incredible nurses but their hands are tied and they are just part of this broken system. I'm not going to burden everyone with too many details but just for example, think about arriving at the hospital ready to go for chemotherapy and sitting and waiting for 6 and a half hours before finally getting started on what you are there for. Something is NOT RIGHT WITH THAT. It really makes me want to get involved with patient advocacy. There are so many patients that have no clue what is going on and since I have been through this craziness twice at such a young age, I have a lot of experience dealing with the healthcare system and all its flaws. I have so much fire, I just wanna do something about it. Definitely on my list of future career goals.

Today I'm at work at RPA and making progress on their brochure...something that's been naggin on me the last week or so when I was too lethargic to work at all. Feels good to be back at it. I just hope I am doing what they want me to do here, cause it's really open-ended and independent work. I am excited about this upcoming weekend for my friend Maura's wedding and then next weekend for the big Cancer Survivorship Walk. I am REALLY hoping to stay healthy and not get sick from chemo or sick from a cold/infection (like I did after last cycle) so I can enjoy these next few busy weeks and this season.

I have not talked much about the Cancer Survivorship Walk on my blog, but it has been a big part of my life these last 6 weeks and will continue to be leading up to it and maybe after. In as short an explanation as possible for those of you that are out of town and I haven't been peppering with emails for weeks, the Walk is to benefit The Wellness Community of Greater St. Louis, part of a national non-profit organization dedicated to providing free emotional support, education, and hope for people with cancer and their loved ones. I have been a huge beneficiary of their services throughout my treatment process these past 4 months. I go to my weekly support group there, educational programming and all kinds of other stuff. Now it's time to give back and I am doing so in a huge way. With tons of help from my friend Gavi, we have organized Team Jason, so far 77-people strong and are raising $2000+ (with your help!) through individual pledges for the organization. This is one of their two major fundraisers over the entire year and they are solely supported by individual and corporate donations.

I am totally psyched about the interest and involvement from all of my local people. Some friends--Emily Cohn from Chicago and Becca Rothbaum from NYC are even FLYING IN to walk for me!! Team Jason has grown organically and we still have a week and a half to go. People from all walks of my life--family, old friends, college friends, co-workers, support group people, neighbors and people from my mom's work will all be participating in the walk. It is going to be really emotional and I think I'll be knocked down at the sight of it all. Especially with everyone wearing the custom-designed Team Jason T-shirts that my good friend Matt Gross made and is donating all proceeds back to the organization. To get your hands on one, simply visit:
http://www.ulclothing.com/catalog/product_info.php?products_id=59&osCsid=456c05d9502fab048987bba8c80642d0
They are really cool!!!

For more information about the walk, to join the team or donate, just email me: jpbrightfield@yahoo.com or Gavi gavriel.weiner@gmail.com. To bypass us, the address is:
The Wellness Community of Greater St. Louis
1058 Old Des Peres Road
St. Louis, MO 63131
Designate checks with "Team Jason" in the subject line.

Looking ahead, I have at least 18 days/approximately 3 weeks off until I can be admitted for my last cycle of chemotherapy and consequent transplant, where I'll get back the 2.5 million stem cells they took from my a few weeks back. I am of course excited for the break--part of it will likely involve feeling sick, this is inevitable with what I am going through--but I will be back to doing regular things like working, hanging out with friends and feeling "normal." Not like a patient, but like a human being. Like a 24-year-old. Regarding the time frame, I really don't like the way my transplant coordinator has been communicating with me. In fact, she hasn't. It is all part of the broken system and unfortunate details that get pushed aside during this awful process. So, I really have NO idea when I will be going in for my big stay. Anything can happen, I am just going off of the plan that we were told at the last meeting. Trust in the blog, you will be informed.

Until then, enjoy your weekend and get outside!

The 4th cycle

2006-04-16T14:03:00.000-07:00

Hey all. Happy spring holidays to everyone. I usually like this time of year a lot, but this year I am bleh. I am so low energy, I just can't get out of this funk. The smallest task really takes it out of me...going on one errand, checking my email, fixing a meal--all cause for a nap. Most of you know me well, and can attest to the fact that I am a high-energy person. Hyperactive, always going strong, and this is so uncharacteristic of me which just makes it worse. For the first time in my memory, the cumulative effects of the treatment are really making it consistently hard to live my life in a "normal" way. I feel like I am just bitching, but it's difficult to explain how this is affecting me without sounding that way.

Tomorrow is my 10th day of chemotherapy in a row, 2 more to go after that. I will be hospitalized for my routine stay on Tuesday and Wednesday, receiving Cytoxin via IV as usual. I'm really indifferent to the hospital stay this time, just kinda want to get in there and get out. Try to recover some energy and feel like myself for a little while at least before my scheduled transplant after this. I am really trying to keep my head up--keeping the long term ultimate goal of remission in mind. It's hard though.

Like we always say in my support group, it's really more difficult to stay positive when you don't feel well. It's such a mental game, like many things in life. I have lost interest in working...the little energy I do have each day, I want to save it for evening when I can hang out with my friends or spend time with my parents. I am going to cut this short now, seeing as I am not in a very positive mood...but I think ya get the basic gist. I am doing okay, moving forward, but just kinda down and mentally stuck in the midst of all this cancer treatment nonsense. Wish it was easier, but then what would I complain about!?

treatment setback

2006-04-06T19:28:00.000-07:00

Monday morning I got a call from my oncology nurse coordinator. She said that Dr. Linette, my medical oncologist, wanted to see me. I didn't think much of it cause it had been a few weeks and I figured it was one of those "the doctor needs to see the patient so the insurance company can get paid" kinda things. I have been there before a lot. Those are fun.

So I scheduled an appointment for the next day, this past Tuesday. I could tell something was up immediately when Dr. Linette walked into the exam room. His face is very telling. In the interest of being thorough, he went back to my bone marrow biopsy from a few months ago (Feb. 22) that had been reported clear then, and found some cancerous cells. So now we know that there is cancer in my bone marrow, which is something we were really happy to believe was not the case a few months back. Now I have to do another round of chemotherapy before I can go in for my stem cell transplant, which will now take place in May instead of this month.

I am angry and frustrated and disappointed and sad. I am ready to be finished with all this. Really ready. I was thinking positively the last few weeks, I was totally ready to get in there and do this transplant thing. But now I have to wait AND go through a whole additional round of Temodar, VP-16 and Cytoxin. My counts are going to recover even more slowly than they did this past time and I am going to pray not to get another infection. Last time around that led to the 7 blood transfusions in a 10-day period of time.

What I am most disappointed about is that this is probably going to delay my ability to get down to Camp when I wanted to. With the transplant taking place in May, I don't think May 31st is going to be the best time to move down to Lesterville for 10 weeks. If you know me at all, you know how much I love camp and how much I need that place for my mental recovery. I am so sad that I am not going to be able to be there when I want to be. And I probably won't be able to do the job I did last summer because it's more of a whole-summer kinda thing. Damn. I am so pissed. Cancer sucks.

But of course, I have to think of the long term. They think this one extra round of chemo, based on past pediatric studies with kids who had my tumor recurrence, will offer a better chance for my long term remission. Let's hope so.

I escaped to camp for the past two days and it was absolutely beautiful. (See photos--that's baby Izzy, the newest staff member down at Taum Sauk.) It was a great retreat, and I got to have a lot of alone time and thinking time (a little TOO much thinking time). But it was great to see Michelle and John and meet their new baby and spend time with Gavi of course. I honestly think I went for 12 hours without thinking of cancer. Nick showed up too so we got to talk camp for a little bit and ironed out some housing assignments for this summer's junior staff, so the whole trip wasn't a complete waste. It was my first time outside St. Louis since starting treatment. Yeah, depressing.

I am starting chemotherapy Saturday, the same day I take my last Oxycontin. I'm really looking forward to being off of all my pain medicine, and while this whole setback is depressing, the pain thing is good--a step in the right direction towards being finished. 10 days later, I'll be admitted for my inpatient Cytoxin and then as soon as my counts recover and they give me the allotted break between rounds, I will be admitted for the transplant process. The whole thing is now going to drag into June, possibly July...that's assuming all goes as planned without any complications and we all know how that is. Just read back a few posts if you have any doubts.

I will also get to go to my friend Maura's wedding on the 22nd and the big cancer survivorship walk that I have a team of 50+ people walking for me, on the 29th. If I had been in transplant, both of those would not have been possible. So in exchange for moving on with life sooner than later, I get to experience these things which I am grateful for.

Please keep the positive vibes coming my way. I need you more than ever.

Moving right along

2006-03-28T14:23:00.001-08:00

Well, I was just looking over my last post and the comments and emails I received in preparation to write this one, and a LOT has occurred in the past 10 days. For starters, I was sick last week. None of those shifts or work opportunities happened that I talked about in the last post. I didn't earn any of that money haha. But, on a brighter note, last week seems like months ago as far as my spirits and my health status goes.

My mom and dad both had a cold, as did a bunch of people around our community...so there's no telling where I got it, but I got a cold. And an infection. And it was really hard to kick it because my white blood cell counts (the immunity in our bodies) were super low early last week. On Monday and Wednesday, they were down to 0.1, the smallest measurable degree above zero. This basically means I had no immune system at this point and so obviously it was really difficult to fight off this normal cold. I was lucky in many ways though--my fever never spiked after 100.6 on Tuesday night and I did not have to be admitted to the hospital. I was in bed all week, couldn't do anything, missed 4 shifts at work, had to get 4 blood transfusions (and another one yesterday), and was very depressed, but it's all over now and I am feeling much better. I am almost back to 100%, with just a lingering sore throat.

Also last week, I continued to have to go in every morning to the cancer center to get shots of Lupogen. This is the growth factor medication that was moving my stem cells from my bone marrow to my blood stream in order to prepare for my upcoming transplant. The medication also increases white blood cell counts. Between that and the blood transfusions, I probably spent a good 15-20 hours there, a lot of it alone, and it was exhausting both physically and mentally. My white counts crawled up on Monday, Tuesday and Wednesday but finally started increasing Thursday and doubled both days this past weekend.

This meant I was ready to start phereisis, which is the harvest of my stem cells for the transplant. Is anyone getting this? I feel like this is really hard to explain and nobody really cares about the details anyway. Hmm. Well maybe this is just for my own record then. Anyway, so my white counts reached a certain level (actually surpassed it by two times) and I started (AND FINISHED) phereisis in one long day yesterday. This means that I sat in a chair, much like chemotherapy, and had one line in and one line out of my catheter--my blood spun through a machine and now I have 2.5 million stem cells being stored cryogenically at Barnes hospital, awaiting my transplant next month.

What's Next?
This is the fun part. I now have about 10 days off. The only thing I have to do down at the hospital is get my catheter dressing changed/flushed once a week and get my blood drawn to check for possible transfusion need twice a week. Other than that, I am going to use this time to finish up some work for Camp Taum Sauk, go down and visit Camp Taum Sauk (check on my babies), and spend time having fun and relaxing before I am admitted to the hospital for 3-4 weeks.

About my upcoming hospital stay:
I may have gone over this in the last post, but now that I have a better understanding and more details, I will try to lay them out in as few words as possible...I will be admitted sometime soon...in the next 1-2 weeks. My best guess is Sunday April 9th, but I am hoping its sooner and knowing it could be later. I will have more details about this probably by the end of the week.

The first 6 days of my hospital stay I will be receiving extremely high doses of chemotherapy. The chemo drugs I am going to be getting are Carboplatin, Etoposide/VP-16 and Thiotepa. Hardcore toxic stuff. It will knock all of my blood counts down to zero. As in 0.0. No immune system at all. Then I will have a 2-3 day break. I will likely be nauseous and vomiting, but hopefully these side effects will be controlled as much as possible with drugs like Emend, Zofran and Compazine.

After the break, on day 9 or 10, I will receive the transplant. My stem cells will be dripped through an IV back through the catheter on my chest and engraft in my body to start forming a new immune system. 2.5 million of them. Around my 12th day, I will probably start to feel some major side effects from the chemotherapy--all things I have dealt with before, like mouth soreness, throat pain, nausea, vomiting, etc. Normal chemo stuff, just to a higher degree. These should subside in a week or so.

The approximate time spent in the hospital after the transplant is 2 weeks. Once my blood counts reach 1.5, I will be eligible for discharge, assuming everything else is okay. The days and weeks following my discharge will likely be filled with blood transfusions and if I get an infection, I may have to back into the hospital or stay longer the original time. Hopefully none of this will happen and I will be able to go to camp when I want at the very beginning of the summer. Dr. Vij said today that I could get my catheter out as soon as 14 days after my discharge!!!!!!!! Seriously people there has been a catheter with three tubes hanging off my chest for weeks. Do you KNOW what it will feel like to get this out??

I am really looking forward to the next week or so when I have some open time in my calendar and I can get some things done. I have one final shift at The Center tomorrow afternoon, and then I am free. As I mentioned before, I am going to start doing some work for RPA Construction Services in their office, updating their brochure and creating a website among other office stuff. I am also going to continue the marketing project for Taum Sauk and do some other stuff related to camp, hopefully including a visit/personal retreat down in Lesterville. If I get all that done, I will sub for people at The Center until my admission. Besides that, just get ready for this transplant mentally and emotionally. I am physically ready to go. Moving forward and looking forward to the end of this whole ordeal.

Thanks so much for everyone that was associated with my birthday. I had an awesome one despite being in the middle of all this.

Preparing for the stem cell transplant

2006-03-19T14:32:00.000-08:00

This is my first post from my new laptop. It's great, I'm really getting used to it and with my new fancy bag, I've been toting it around everywhere including work, where I write to you today. This past week started out a little slow--I was painfully bored Monday and Tuesday. But since then I am been really busy with shifts at work and other random things. Honestly the weeks fly by despite a few lonely afternoons sitting in my basement feeling worthless. This coming week I am really overconfident regarding work. I have worked the past 3 days at The Center including today and am working the next two all day from 9 to 2:30. I'm also supposed to start at this other job at RPA Construction Services helping them out with their communication materials and some office work. Plus, I am in the middle of this marketing project with Nick from Camp Taum Sauk that I have been trying to finish up for the past week or so. Ahhh, feeling a little crazy with all this coming up this week, but I will figure it out.

I just need to keep in mind that my health comes first and I really need to take it easy. My blood counts are WAY down and I am really immunocompromised right now. That means I am prone to infection and other illness. I should be wearing a protective mask, but I refuse. Especially at work and especially at home. It just feels ridiculous. I've never gotten an infection before on chemo so I feel like I don't need to. It's one thing if I'm hanging out at the cancer center where everybody wears masks, but I really feel weird trying to work at the front desk wearing a surgical mask. I'm just really hoping I don't get sick or some kind of infection. That would really suck, especially since I just went on the whole rant about how I won't wear a mask.

Anyway, so I've started my daily growth factor shots, a drug called Lupogen. The purpose of this is to move my stem cells from my bone marrow to my blood stream so they get em out easier during phereisis. The shot is a little painful just like any shot for 10 or 15 seconds when they give it, but so far there are no lasting side effects. I am anticipating some mild to moderate bone pain in the next few days when the Lupogen builds up and really starts working. This is because it will be stressing on the bones as it takes the stem cells out and moves them into the blood stream. Starting tomorrow morning, I have to go in every morning at 7 am to get this shot!!! That is SOOOO early for me. I haven't had to get up at that hour for a while so I am really dreading this. Especially since I will be going straight to work this whole week like a normal person. It's going to be a tough week physically, but hopefully the 2 units of red blood cells I got this morning will help with my energy level. The good part will be when I get my paycheck in a few weeks coupled with my birthday, I could really use a boost to my bank account after buying half of this laptop.

Other than that, not much going on in my life. Just anxious to get this all over with and anxious to know that I will be able to do what I want this summer without being sick and weak. Anxious to get a real job and move on and put cancer behind me forever. But realistic that cancer is a lifetime disease, that it might take longer for me to recover from this stem cell transplant thing than I would like, and that eventually I will get a job and move on and when I do I will probably be wishing I used this time in my life to relax a little more.

3rd round over

2006-03-12T07:47:00.000-08:00

I am bad. I haven't posted in nearly 2 weeks. Well I guess what that means is that everything has been plugging along as normal. I'm not going to go too far back...but instead focus on right now.

I just got out of the hospital yesterday afternoon from my routine 2-day cytoxin run, the end of my third round of chemo, in fact the end of my regular rounds of chemo altogether. The last thing we have to do includes my fourth round of chemo and that is the stem cell transplant.

In the past two weeks I have been reading a TON of information about the transplant. I'm not going to share it all, but the basics are this: I will start a growth factor shot to move my stem cells from the bone marrow to the blood stream, This makes them easier to extract. Then once these reach a certain level TBD, I will start aphoresis, which is where they extract my stem cells from my body and replace the blood that does not include stem cells. There is no pain or any major side effects associated with any of these procedures. All this is beginning March 16, this Thursday.

After this step is complete, I will go into the hospital for approximately 3 weeks for the high dose chemotherapy and transplant. This will be in April. That's about all I know right now...many of the timing things depend on how I do with each step of the procedures and all that...so check back to see what's going on as we get into it.

This past visit to the hospital was the best yet. Everything seemed to move smoothly and I wasn't nearly as anxious, until the second day, I was a little on edge. But my care was great and I had a great day with visitors Nana, David, Andrew, and Gavi all on Friday which made the day go by so much faster.

Right now I am still recovering from the chemo, feeling really jittery and anxious and a little upset stomach. I am anxious about getting my new laptop set up before my hospital stay. Oh yeah, I got a new laptop and it rocks.

Also was able to successfully reduce my pain medicine to half the dose after the good scans last blog. So that is good news too. Busy week ahead with random appointments and work shifts and stuff at The Wellness Community. Will try to update more often as usual!

Good news

2006-02-28T19:06:00.000-08:00

Well, the headline says it all. We received good news today from the oncologist. You know it's good news when he starts the conversation with the words "I have good news." The PET scan that I got early yesterday morning showed no cancerous activity anywhere in my body. The activity that showed up on last Wednesday's MRI was likely scar tissue from previous chemo and radiation treatments, a common thing on radiological readings like this. Also, the bone marrow biopsy showed no cancer in my marrow, which was an additional good piece of news this afternoon.

We are thrilled and relieved by this news. This gives me fuel to finish the treatment that has been prescribed and gives me a really good idea of when all this will be finished, which is much sooner than I had originally prepared myself for. Even with all the excitement, I am hesitant to get over confident. Having been through a relapse, I now feel more vulnerable to the continuity and chronic nature of this disease. That being said, I am still elated at these scan results and feel very motivated for my next round of treatment which started this morning.

Having started chemo this morning, following the same pattern as my first two rounds, I will be hospitalized March 10/11 for Cytoxin after taking Temodar and Etoposide for 5 and 10 days respectively beforehand. On March 16, I will begin the stem cell foreisis process which will take my stem cells out through a machine and store them for approximately 3 weeks while I do high dose inpatient chemotherapy. Then the stem cells will be replaced while I am hospitalized for this ~3 week period and I will recover over the next 6-12 months should everything go as planned.

I am happy. I feel like my life will be back to normal at some point sooner than I expected and that makes me a little nervous oddly enough. I still have a lot of hard treatment to get through to make this thing concrete, but with the motivation that this chemo is working and that the treatment protocol has been successful so far, it will be so much easier.

MRI results

2006-02-23T19:22:00.000-08:00

Well I survived. The longest day ever like I had Wednesday isn't all that uncommon after all I realized. Lots of patients who come from afar to get treated at Barnes probably squeeze things into one day a lot of times to reduce travel and stress. But nonetheless, it was still a long day and we got through everything.

First my blood draw at 9, which produced good results that my platelet count had gone from a 12 to a 56 from the tranfusion the day before. This allowed for me to continue on course with the rest of the day's procedures. If it had been below 50, they would not touch me in fear of causing uncontrollable bleeding.

Then we got the MRI results from Dr. Linette and JoAnn. This was disappointing. The doctor said that the results were inconclusive. The MRI scans on my entire spine looked "different" but not better or worse. He was upbeat and said that clinically I am doing well, tolerating treatment with a minimal occurrence of side effects. He was optimistic, but ordered further testing before he would say much more. I was fine when we were in there, but later last night really lost it. Deep down I was disappointed--really needing to hear good news, and not having any expectations for what we would get from him. I think I was overtired from all that I had been through yesterday, but I just felt so sad that we didn't get some miraculous good news that the tumor had shrunk and we were on our way to being finished. I can't wait until Tuesday when we get results of the PET scan which will be conferenced with my entire oncology team including the neurosurgeon, radiation oncologist, and my current doctor with the MRI results to compile a full report of my progress. I will anxiously be awaiting that all weekend and will promptly report next week when we get the results.

Next, we had a short break so mom and I went home to play with Riley and dad went to work for the rest of the day. At 1 we reported promptly for the catheter installment in interventional radiology. We waited in the prep room for 2 hours!!! It was awful. Made a long day longer. But when I finally got in for the procedure, it was not painful at all. I had a really great team of doctors and nurses and technicians and they seemed sooo professional once I was in the operating room. The procedure was quick and now I have a big bandaged catheter hanging off my chest. It is painful, but the pain should only last 3-4 days. I am taking additional medications to thwart the pain, which are kinda working, kinda not. But like I said, it is not too bad. I was in a twilight zone when they did the actual procedure.

Next and finally was my bone marrow biopsy. I had a great technician named Vance--highly recommended for anyone needing this procedure done. He made a very painful procedure not so bad and got a large sample of my bone marrow for the pathologist to review. I will also anxiously be awaiting those results Tuesday as well, but Linette said we might not have them yet. The day was finally over and all that is left of that procedure is some bruising-like pain in my lower back/hip area and a small band-aided hole that is healing quickly.

Looking forward to this weekend--after my PET scan and bandage change tomorrow afternoon, I have a few fun things to look forward to. I have two friends coming in town for Mardi Gras--Liz from DC and Jess Mentgen from Dallas. I am really really really hoping to be feeling a lot less pain so I can participate in the festivities Saturday, but know that might now be the case. Either way, I will make a way to see both friends and have a good weekend anyway.

Keeping my eye on the prize even though that prize seems further away than ever. Have a great weekend everybody.

Big Week

2006-02-19T19:03:00.000-08:00

I ended up being well enough to visit CoMO this weekend and had a great time. I stayed with my friend Megan and saw all my remaining friends there plus my good ol' cuzzin Cait. Ate at all my favorite places including Quinton's, Shakespeare's, Addison's (Kyle, I missed you), Bambino's, Cheery St. Artisan, Main Squeeze--yes, all in one weekend!!! Good thing mom and dad slipped me a 50 on the way out the door. I am so spoiled.

My visit was great, but it definitely made me feel old. My number of friends at Mizzou is dwindling fast--the ones left in Columbia have cool local jobs (the few there are) and some are getting ready to leave soon anyway. Apparently I just missed my friend Kyle when he moved to Chicago last week. Being on campus felt strange because even though it's only been a year and a half, there have been a lot of changes on campus. Also it's just that feeling that so much changes in a college environment--it's weird to think about how many people rotate through there and do their 4 years and then go. It's like a revolving door. Must be very weird for the staff and faculty that are constantly there.

I have a BIG week this upcoming week: MRI tomorrow night and then results Wednesday. Along with those results I am getting a port catheter installed on my chest. It's basically this thing that hangs off the chest and most chemo patients have them but I have successfully avoided for a while. Now it's time and I'm kinda dreading it. But it's necessary for my stem cell transplant. They are also doing the bone marrow biopsy Wednesday. I just kinda remembered I already blogged about all of this. I am exhausted. Anyway, it's all happening this week.

Next weekend is Mardi Gras so I'm hoping to be well enough (and that the weather is better than this past weekend, it was FREEZING!!!) to hang out down in Soulard all day. It's the 2nd largest Mardi Gras celebration in the country believe it or not and I've been there the past several years. It's a blast. A great distraction.

Hope you are gearing up for productive week. Talk to you all after Wednesday's results.

Ickyness

2006-02-13T17:34:00.000-08:00

Well I certainly got a lot of great feedback on that last post. Thanks to all that posted a comment or emailed or called me personally. It did feel good to release, and you will probably be seeing more of that as we continue on this path to recovery. There is a lot to be frustrated about, but there is also some good things that have come from this and more good things that I think will come as a result of this down the road. Don't really know what I mean by that, but that's just the way I feel.

Since last posting, I enjoyed about 5 days of symptom-free living last week. I worked a few extra shifts at the gym, spent a lot of time with friends, and caught up on things here at home. On Saturday, my 7th day out of chemo, like clockwork, the side effects set in. I got very sore all over the inside and outside of my mouth, and my throat is swelled up making it difficult to eat which is leading to weight loss. I'm also a bit achy and more tired than usual, due to a low red blood count.

This past weekend I still worked both afternoons at The Center because a bunch of other people were sick and frankly I was feeling well enough to sit at the desk. Oddly enough, I am blowing through money faster than usual--(got a $400 credit card bill coming tomorrow!) so working is not only good for distracting me, but also a necessary evil to keep up with my current lifestyle of going out to lunch and spending lots of money on other random things. Right now, I am still paying for a lot of the things that make me feel independent, but am not paying for things that I really can't afford, instead allowing my parents to take those burdens. I hate it, because I like to feel somewhat independent, but I simply can't afford car insurance ($923/six months) or prescription meds that cost over a buck a pill. So I kind of gave up on that whole independence idea for the moment and am letting (asking) my parents to pay for things that I would normally be paying for myself at 23 and not in school.

This week I have a busy week--just found out today when I went to get my blood counts that my red cells and platelets are very low despite a red cell transfusion when I was in the hospital two Fridays ago. So, I am getting a 4 hour blood tranfusion tomorrow after working 4 hours at the gym. Wednesday, we have an appointment with Dr. Vij, the stem cell transplant physician, to check in with him and schedule the bone marrow biopsy that my insurance company has requested for approval. On Thursday I am headed to Columbia (assuming I am feeling better--everyone cross fingers!!!) to visit some old friends from college and satisfy all my CoMO cravings. I am really getting nervous about how tired and sick I am and hope to be feeling better by Thursday afternoon so I can enjoy this little trip. The whole point of it is to celebrate the break from chemo. How shitty would it be if chemo ruined that celebration!?

Back to work Sunday afternoon at noon after the weekend in Columbia, and then Monday Feb. 20 the MRI that will determine the next step of my treatment. Can't wait to find out, hopefully good news, from that MRI next Wednesday Feb. 22. For now, I am getting ready to curl up on the couch and watch some TV with the mom and daddio. Too exhausted to do much else.

A very special welcome to my cousin Alec who now attends school in College Station, Texas. Thanks for reading and for all your support.

an emotional few days

2006-02-06T12:09:00.000-08:00

Hey all. Back from the hospital and finished with round 2 of chemotherapy. Wish I could report a countdown--2 down, ? to go is about all I can manage at this point. I am feeling much better today after a few very emotionally rocky days, both in and once I was out of the hospital. Still having a little trouble keeping myself under control, but it's improving.

The two days in the hospital were just so hard. I usually try to make things sound the best they can on this blog, and relative to many other patients and other future hospital stays I have in my future, this was really nothing. Physically it was better than last time. I had an awesome doctor and an even more awesome night nurse (if you've ever been in the hospital overnight you know this makes a huge difference!). I only got sick vomiting once, much better than the last time I had Cytoxin inpatient, I am learning to ask for meds when I need them and be more persistent in the hospital. That's what it's all about really, you have to control your own care as much as you. They are so understaffed and overworked--I've learned to make friends quickly to get what you want when you want it.

My stay was so emotional for me. I just lost it on Saturday with my mom there, I think the meds (Cytoxin--the chemo, Mesna--a bladder protectant, my normal pain meds, plus others) just really got in my head and I had a release. I think it is also the fact that the future is uncertain and that absolutely KILLS me. I am type A as you all know, and I hate uncertainty. Life is full of it and I am learning, but still. The next step of my treatment is uncertain--we don't know what we are doing next at all.

All Dr. Linette told me this weekend in the hospital (he was on call, stopped by once--of course during the half hour neither of my parents were there) is that we will do an MRI in about 2 weeks to see the progress of the chemotherapy so far. I guess we will be looking at the scans to see if the tumor has shrunk. I am looking forward to reducing the dosage of my pain medicine (Oxycontin) after that if it looks like the tumors have shrunk. I would like to reduce it for obvious reasons, but mainly because of the side effects, which I have to take a series of other pills just to prevent. This MRI is being scheduled tomorrow with my nurse JoAnn. I called her today, but she was swamped and I just get this horrible feeling that I'm being pushed off, like my care is not important. I am frustrated, but I am calling her again tomorrow (usually she is amazing) to remind her to schedule an MRI and follow up with the oncologist after that to determine the next step. My understanding is that it will either be more chemotherapy just like I've been doing or the beginning of the stem cell transplant, which I personally don't know much about.

The other uncertainty that is causing me a lot of anxiety is the long term. I feel lost in life. I feel like I've never gotten a chance since college to really do anything normal. It's so weird cause I don't REALLY want a full time job and all that, but I DO. Bad. I just want to be normal, living in a big city, being young, meeting people, not sitting in hospital waiting rooms like I did this morning for 2 hours with old people. It's not fair. I am ranting--but I think I deserve it a little bit. It's just these lonely times like from 1 to 4 in the afternoon when I am sitting in my basement on my computer that I think, "what the hell am I doing here?"

This morning I had to go in to get my Neulasta shot. You may have seen commercials on network TV for Neulasta--it keeps your white blood cell count up and I get it after each round of chemo. This time, JoAnn and the floor nurses during my visit failed to tell me the appointment time, so I had to wake up at 8 and call her and find out cause the doc did mention that it was the Monday after treatment finished. Then, when I got there I remembered that I also get a drug called Zomeda which goes through an IV and protects my bone marrow from degenerating from the chemo. I asked about it and yes, I was due for it, so that took even longer than expected and I was supposed to be home to let someone into our house so that was stressful. I was all alone at the hospital and people are all over the place--it seems like some of these older folks bring half their extended families to every appointment. Bottom line, I got my Neulasta and my Zomeda, got home safe and sound here to rant a bit on my blog. And, I made my own Zomeda appointment for a month from now so I know when it is and am not depending on somebody else.

That's my other big issue right now. I have all this support from people coming from all angles and I truly truly appreciate it, but I am not good at receiving it. I am not good on the receiving end, and it is so hard. I should have gotten somebody to come with me to the hospital this morning, but I called one person, they didn't call back and I gave up. People are out there willing to do stuff, I am just not willing to ask. It's a hard lesson to learn. I am a giver, not a receiver and that sucks in this particular situation.

Hope all is well wherever you are--we are readers across the country and the globe, from The Netherlands (I LOVE YOU BRO!!!) and Australia all the way back to Lesterville, Chicago, DC, San Francisco, New York, Columbia, Baltimore, Dallas, and of course right here at home in good ol' St. Lou. Wish you all the best for this week. I will update after speaking to JoAnn tomorrow regarding our next step.

day 8

2006-01-31T15:20:00.000-08:00

Hey, not much to really write about, but figured it'd been a while so I'd post. Second round is going well. It's had its ups and downs, a vomit here some nausea there, but nothing major. Energy level is still up 8 doses in. Gearing up for the big hospital stay this Friday and Saturday when I get my Cytoxin, the one that really screws me up inside. Then I will recover for a few days and wait until Dr. Linette says it's a good time to do an MRI. The scan will tell us what progress the two rounds of chemotherapy have made.

I spoke to my friend Sara's 4th grade class in a nearby suburban school district about cancer and read them a book. It was a really great experience for me, the kids had such great energy. They were all so interested in my story and related it to stories of relatives and classmates that had been through cancer. It was a great experience.

I am volunteering now at the American Cancer Society with my free time. It feels good to be giving back, but the work is boring. I am hoping to make some connections for a job for after treatment.

I've been spending lots of time with mom and dad cause friends have been busy and scarce...feels a little weird being 23 and all, but I am happy to have them around. Daytime (especially afternoons) are lonely. I am looking for some random opportunities to earn money through some of my own skills, like organization. Just gotta get the word out.

Talk to you all after I get out of the hospital.

Round 2 has commenced

2006-01-24T10:55:00.000-08:00

I guess the weeks really fly when you are having fun. Fun meaning no chemotherapy! Can't believe it's been a week since the bro left and I posted my last entry. I started my second round of chemotherapy this morning. It's all the exact same as the first round but to remind everybody, I will be on chemotherapy for 12 days.

The first 10 are oral chemo, two drugs called Temodar and Etoposide. I take both drugs the first five days and just the Etoposide for days 6-10. There's a certain way I have to take the pills when I first wake up...first thing I take is a Zofran, an anti-nausea pill. Then I wait 45 minutes. Then I take the Temodar. Then I wait 45 minutes. Then I take the Etoposide. Then I wait 45 minutes and I can eat breakfast.

On days 11 and 12, which this round will fall on February 3rd and 4th, I am an inpatient at Barnes-Jewish Hospital receiving a strong chemo drug called Cytoxin. It was pretty unpleasant last time around, but that usually means that it's working.

These first several days of chemotherapy I don't really feel any side effects. There's no way of knowing what I will be feeling like on any given day, but judging from past experience during my first round and my last time going through chemo with my brain tumor, things tend to get a little bit tougher each round. That being said, I am not expecting to feel anything until this coming weekend. Then I might start to feel low energy, a bit nauseous, and maybe some other random side effects. We will just have to wait and see. After this round of chemotherapy, I will get an MRI to see what progress has been made in shrinking and/or eliminating my tumors.

Joel is doing well in The Netherlands. He spent the first several days traveling in Amsterdam with his friend Joe and is now settling into his new home at school in Maastrict (sp??). We've talked every day since he has been gone thanks to international cell phones.

Hope all is well with everybody wherever you are. Thanks so much for the inspiring comments. Feel free to post questions as well, I am up for anything. Love you all.

Joel

2006-01-18T18:45:00.000-08:00

Today I dropped my little brother off at the airport for five months in The Netherlands studying abroad. It was hard and sad to see him go, but I know he will have a blast. He will also miss the worst of my treatment, which I am really happy about. There won't be any pressure to come home from Indianapolis in between treatment cycles and see me. I wish I was able to go visit him, that would be fun, but during treatment that kind of travel will be almost impossible. I can barely make it down to Columbia to visit college, let alone across the world. It was great getting to spend the last five weeks with him right here during the beginning of my treatment, emotionally the hardest part.

Today and yesterday we got some pretty good news. My second round of chemotherapy that was supposed to start yesterday is delayed an extra week because my blood counts are too low to begin. After a week more they should be fine to start. It's nice because it gives me another week of feeling real good (not that I feel that bad my first 6-8 days of chemo). Chemotherapy will begin on Monday, January 23 and the inpatient hardcore Cytoxin days will be Thursday and Friday February 2 and 3.

I'd like to give a shout out to my official support group from The Wellness Community. I absolutely love you ladies (it's all women :) and I couldn't get through this without you every Tuesday night. You are like the sisters I never had and the mothers and grandmothers that understand things that mine could not because that have never been through this before. I look forward to seeing you next week and think about your stories every day.

Tomorrow I am working at The Center. I have been keeping busy this short week with some random projects and I've been feeling real good lately. Thanks for keeping up everybody. Hope all is well.

another small blow

2006-01-13T15:04:00.000-08:00

Today I heard from the nurse handling the insurance approval for my stem cell transplant, the next major step of my treatment slated to begin sometime between February and April. The approval process for this procedure is very involved and they require many things before they will pay to do the procedure. Obviously, we are doing it one way or another, but insurance approval would clearly be the best choice.

She called to tell me that my insurance company is requiring two more procedures than I have already done (I have completed a bunch of stuff for them already--an echocardiogram, a chest x-ray, MRIs, a biopsy of some sort, I forget exactly). Anyway, it's just one more thing that I have to do. So frustrating and difficult to go through.

What they are needing me to do, which is scheduled for next Thursday, is a bone marrow biopsy. It's a relatively invasive procedure where they will take a large needle into my hip bone and extract marrow to see if it is healthy. The insurance company is looking for healthy bone marrow to increase chances for approval and that the stem cell transplant will be a success. The second thing they are requiring is an MRI before starting my next round to determine what progress has been made. This we will know more about after a meeting with my doctor next Tuesday.

I'm feeling discouraged by having to go through yet one more difficult and potentially painful procedure. I feel like my body has been poked and prodded in every way it can and I am not even that far into this process. The one thing that brings me comfort is knowing that this is all for my well being and all focused on the goal of making me healthy.

Ups and downs

2006-01-11T08:50:00.000-08:00

Hey. I could be so much better at this. I think about blogging every day and I imagine that I post more than I actually do because so much has happened in the past 9 days that I really could have written something about, but just didn't find the time.

There have been a lot of ups and downs since finishing my last treatment. The so called "break" from chemo has turned out to be just kind of half a break. Symptoms and side effects tend to pop up out of nowhere and each day is different. Some things are consistent, for better or worse. I wake up nauseous almost every day. It's because my stomach is empty and I take an anti-nausea pill right away. Sometimes it works and sometimes it doesn't. So sometimes, like today, my day starts at the toilet bowl. Ew.

Since my last post on the first of the year, I had about 4-5 really good days with very little activity and I was feeling great. About 7 days out of treatment, some of the side effects begin to rear their ugly heads. This past Saturday, I developed some painful mouth soreness. It is a common side effect called stomititis caused by the drop in your blood levels due to the chemo. The best way to describe it is two-fold: It feels like somebody has flossed your teeth for 4 hours straight without letting up. Your teeth are sensitive and feel almost like they are not connected to your mouth. The other part feels like you just ate a bag of chips and they cut the roof of your mouth real bad. Eh, yeah, so that's what I was suffering from on Saturday into Sunday and Monday it went away (yesterday). I got something they call magic mouthwash, a prescription rinse that I think really helped. It numbs the mouth and coats the swollen throat making it easier to eat.

I am really trying to focus on eating. Not just healthy eating but any eating because I am down about 5-7 pounds from my normal 135 which is not that big to start with. I need to be maintaining weight and it is so hard when eating is limited by mouth and throat pain. Again this past Tuesday I had an awesome support group. I don't think I have spoken yet about my support group, but basically I am attending a weekly group through The Wellness Community, a national organization with a branch here in St. Louis that provides free support to cancer patients and their caregivers and friends. I love my group, it's every Tuesday night and the age range of the group members is 20s to 70s. You would think it would be hard to relate with such a wide range of people, but I am really benefiting from the group. It's great to be able to talk to others that are going through treatment and those that have been through treatment before. There are only some things that you can talk to a fellow survivor about. It is great and I had a nice productive group session last night.

The most recent side effect that has risen to claim me is some chemotherapy-based temporary anemia. I have become anemic (essentially really low energy) from my red blood cell and hemoglobin counts going down low. I feel winded going up a flight of stairs and if you know me at all which all of you do, this is really uncharacteristic. Just a few months ago I was running daily on the treadmill. Now I can barely walk up the stairs. So, the solution for this is a blood transfusion. Sounds scary, but in reality is not. It's fairly common and very safe nowadays and I will be getting one in the next two days. It will greatly and quickly improve my energy level and the others that have had one from my group last night assured me that it is one of the few things in cancer treatment that consistently works and is wonderful. I am anxious to get it--it's a six hour drip for the amount of blood I need--but also excited to be feeling better.

My hair is really starting to come out. It's a stressful process and a messy one. All over the pillow, showers are miserable, and it's just disgusting. I don't really care what I look like when it's all gone, I just want it to be done falling out. It's real gross and hard to describe to anyone that has never been through it. I am keeping busy with small projects around the house and due to my energy level and reduced blood levels am not able to do much anyway. My brother Joel is back in Indiana for Sigma Chi rush, which he is running as the rush chair, then he is back briefly to grab his stuff and takes off for The Netherlands on the 18th I believe. The same day I begin my next round of chemotherapy. He will be there for 5 months. I am excited for him to go but will miss him a lot of course.

For the most part I am hangin in there. It's definitely been a tough transition from the holidays when everyone was around and had time on their hands, to now, when I find myself alone all day every weekday and sometimes struggling to fill my time with meaningful things to do. I know I am not alone, but it's hard to remember all the people that I have out there pushing for me. Please continue your diligent reading of the blog, I will try to provide more frequent shorter updates, and keep that support rolling in. I love you guys!

Round one: check

2006-01-01T07:35:00.000-08:00

Wow, 2006. Seems crazy to me. Hopefully this year will bring many great things to you and to me and I will finish this course of treatment and move on from cancer once and for all.

My two-day stay in the hospital was as good as could be expected. Hospitals are gross and I had it good--my own room, plenty of space, nice nurses, great doctors, good care, decent food--but still, it was the hospital and I was there for an unpleasant course of treatment. I got two days of a chemotherapy drug called Cytoxin. The reason they gave me Cytoxin in the hospital as opposed to as an outpatient like most chemotherapy and the rest of my treatments, is because it poses a risk to the bladder. If the medicine ( a toxic chemical in reality that kills cells) sits in the bladder too long, it can cause bleeding and damage the kidneys. They even give a special medication called Mesna to help protect the Kidneys during this treatment. Mine were fine and I had no problems with this.

Of course the treatment itself was not so bad, just an IV full of fluids that dripped into my arm and circulated toxic chemicals throughout my body both Thursday and Friday afternoons. I got very sick early on Friday morning in the hospital--nauseated and vomiting. It was so awful. I couldn't keep anything down, but the nurses were good to me and kept feeding me more medicine until the nausea was under control. I managed to keep eating while I was staying there--found the turkey sandwiches (a favorite food of mine anyway) to be tolerable fare during chemo.

Friday was a long day. Woke up in the hospital after a sleepless night there, waited a long day to get my chemo at 1:30 with the promise that I would be able to go home later that day. I finished my chemo at 3:30, then had to wait 4 hours to get my Mesna cause that's what it calls for--four hours after chemo is over. After an agonizing hour and a half (between 7:45 when my Mesna was finished dripping and 9, when I actually got to go) I got discharged. If you have never spent more than a day in the hospital there are few other feelings as great as being discharged. I know it sounds weird, but it is so energizing. I left with an extra little bounce in my step on the way to dad's car.

Yesterday was a day of recovery. As the day went on, I felt better and better. I was peeing like every 20 minutes, presumably voiding the toxic chemo liquids that had been circulating throughout my body for the past two days (or 12 days if you wanna get technical). Now I have 16 days off (including yesterday) until I have to do any more chemo and I am beyond excited for this break. I can't wait to regain some of my energy and be able to stay up past 11 pm! For my college friends this won't sound so foreign, haha.

Today is new year's day and I am feeling awesome. I feel like a million bucks, seriously. No pain, no nausea, not tired really. It was really great to talk to and see so many people last night. Those that were in St. Louis stopped by my new room (I moved to the basement in my parent's house and set up a little "apartment" :). And I got to talk to Allison, Jon and Pat and a bunch of other people from all over the place and wish them a happy new year's and it was great. My friend Jon is being deployed to Iraq soon so we decided we are going to be Survivors together.

For those of you wondering (I'm surprised nobody has asked!!) that are not around, I still have all my hair. Knock on wood, there are no promises with chemo, but for now every hair on my head is in place and I am even getting a haircut just like normal on January 5. It's a great little bonus that I have. There is no explanation for it, I kept my hair during chemotherapy last time around too. I lost it all during radiation, but this time I may end up losing it it since my chemo is much stronger. There's no telling until it happens or never happens. Of course, you will find out here first.

Thank you so much to the group of friends that met at Kaldi's this past weekend to discuss different ways to support me and my family. We are very excited about your ideas and can't wait to get started. My parents feel overwhelmed by the maturity of my friends in this situation.

I hope everybody had as good a new year's eve (hopefully a little more exciting!) as mine and has many lofty goals for 2006. I know I do.

10 days in

2005-12-28T08:23:00.000-08:00

Hey, just wanted to write a quick post to check in with everybody. Looks like it's been busy and not a lot of people have had a chance to check the blog anyway. But just in case...I am finished with 10 days of my 12-day round of chemo. Tomorrow and Friday I will be an inpatient at Barnes' Siteman Cancer Center where I'll receive my last two days of chemo intravenously.

I have been doing SO well with my chemo this past week. The only side effect that has been apparent is that I've been more tired than normal. My body is just exhausted cause it is busy killing off the cancer. Other than that, no significant nausea or any of the other unpleasantness you may associate with chemo. I've just been takin it easy, not going out too much and limiting myself to one big thing each day. I've also been trying to keep my eating up cause I've got to gain some weight soon. Mom is all over that one. I am nervous about going into the hospital for the next two days but I know they will take good care of me there. I just hate hospitals and it is not fair. I hope I can sleep when I am there. I definitely have to stay one night (Thurs, the 29th) but may have to stay a second night depending on how I am doing with the harsh chemo they are giving me. Hopefully I will be feeling well enough to do something worthwhile on New Year's.

Hope all is well with everybody during this holiday week!

on the road to recovery. Chemo has begun

2005-12-24T10:00:00.000-08:00

I have been meaning to write a post for this whole week but it's been crazy, just as it has in your life. My crazy has probably been a little different than yours, but still, we can relate. After much anticipation and meticulous planning, I started chemotherapy on this past Monday, December 19. I just finished my 6th day of it.

The way my chemo schedule is set up, I wake around 6, take a Zofram. Zofram is a top-of-the-line very common prescription antinausea. Then I go back to sleep for an hour and wake at 7. I take two pills of Temodar with 8 oz. of water. Then I go back to bed for another hour and it is now 9 am and I wake up to take my Etoposide or VP-16. Then I usually drag my butt out of bed and get dressed. I am allowed to eat finally at 9:45 (I could eat earlier but each of the chemo drugs must be taken on an empty stomach. So that's my regimen in a nutshell. It's all over by the time you wake up on a good day. Okay, wait, I know some of you guys are up at the crack of dawn but still.

Chemo has been a breeze so far. Really no side effects whatsoever. My nausea is nonexistent so far. Today was my first day taking JUST the Etoposide. I will do this for 5 days and then do my harder chemo which will be inpatient for 1 or 2 nights at Barnes late next week. The main issue this week has just been exhaustion which could definitely be caused by the chemo and the pain meds and a number of other things. I have spent some time in bed with back pain but it is back under control for now. Just depends on my activitiy level the day before. I need to take it easy. The doctor is convinced that the tumor may begin to shrink significantly if it responds to the chemotherapy, even show some difference after this first round, which will be finished by end of year.

For the pain, it's such a delicate balance. I'm now taking twice as much OxyContin, one of the world's strongest painkillers, three times a day. To maintain alertness and not feel completely crazy, I only take half a dose in the afternoon, which the nurse said was fine. I try to avoid the breakthrough painkiller cause it has a lot of side effects.

In other significant news this week, I moved to the basement of my parent's house from my bedroom upstairs. It feels so much more private and it will be good for me mentally. My parents are still here if I need them. Speaking of, I need to go get some last minute holiday stuff done and some stuff for my room and I am being picked up in 15 minutes and still need to shower!

more plan

2005-12-14T18:22:00.000-08:00

Today we had our meeting with the physician that will be performing my stem cell transplant later in the course of my treatment. The reason for the meeting was to consult and get a more detailed explanation of the procedure. We also got a clarified idea of my overall treatment plan, which I will try to rehash here as best I can, but honestly the whole thing is complicated and filled with "if this works, then" that I doubt I will get it exactly right. In cancer treatment I guess, as expected, there is always a plan, but so much of that plan hinges on things working the right way and my body cooperating with all of the drugs and side effects and procedures that are prescribed. What I am trying to get at is that it's all malleable--anything can change at anytime depending on how I feel, how things are working, and all kinds of other things. That's part of what makes it so scary.

As confirmed today, I will be starting chemotherapy on Monday, December 19. "Starting chemo" merely means I will take a pill that day, or probably a few different extra pills on top of the pills that I am already taking. The first chemo drug I am starting is Temodar. It's commonly used to treat adult brain tumors. I will take it each day for days 1-10 of each cycle. On day 6, it will be joined by Etoposide VP-16 which is another chemo drug. I guess I am kind of skipping ahead here for those of you that are completely unfamiliar with chemotherapy. The word chemotherapy (did I already explain this in a previous post??) is a general word for a class of drugs that go into the whole body and kill cells--both bad cells that have cancer and good cells. That's what causes the side effects that give chemo it's bad name: the nausea and vomiting and loss of appetite and mouth sores and all the other unpleasantness it's known for. Chemotherapy is nondiscriminatory--it can't distinguish between good and bad cells so it just kills everything it can. That's why people are usually in bad shape during treatment. Nowadays, they give all kinds of premeds that help (sometimes for me completely eliminate) the side effects of chemo which make it a much more pleasant process.

After the first 10 days of chemo, I will do days 11 and 12 inpatient. I'll be receiving a drug called Cytoxin through an IV. I've had this particular drug before (and the VP 16 that I'm taking orally) and it wasn't so bad, but this time I think it will be a bit more harsh since they are requiring me to be inpatient. At least I will have access to nurses that can help me get through it. I am bracing myself for the worst. After the 12 days of chemotherapy, I will have 9 to 16 days off and then start the process over.

After 2 rounds of this process, we will evaluate whether I am ready to do the stem cell transplant. If not, I will either take a break or do more chemo the regular way. The short version of the stem cell transplant, which will be taking place sometime between February and April, with approval from my insurance company, is as follows: I go in, they take out my stem cells, store them outside my body, and do some intense chemotherapy. The whole point is that they can do chemotherapy without damaging these stem cells that they take out. Then at the end they replace them. When they are doing the chemo and replacing the stem cells I will be in the hospital for about 3 weeks. Yikes!

I am feeling a bit discouraged and a bit more mortal than I was before the meeting today. The stem cell transplant has a 25% chance of working to cure the disease. I am determined to be part of that 25% and I've got everything going for me--I'm young, healthy, responded well to chemo before, but it still is such a low number. It forces me to view this disease for what it is as opposed to how I prefer to normally view it, just as something that we are temporarily treating and that will go away and I will move on with my life. It sucks to say it but all this shit has the possibility of not working and that scares me to death. I am naive enough and optimistic enough to not let that effect me too much but it is still something that meeting with the doctors always seems to remind me that this is not a curable disease and that they treatments they use are not guaranteed by any means. My tumor is not common in adults at all. There is no treatment protocol so a lot of what they do is a guessing game. They do a lot of their treatments based on how they have treated the medulloblastoma in juveniles. It doesn't have anything to do with where I am being treated--Barnes is at the top of their game and all of my doctors always consult with the neuro-oncology we saw at Harvard to make sure it is the same plan he would do.

That being said, I am ready to start. As unpleasant as it may be, I am ready to start and kill this thing. Ready to move on with my life. Also, I am ready to see what I will be able to handle work-wise during the treatment process. I want to work as much as possible (both at The Center and substitute teaching and possibly part time at the agency that just offered me a full time position that I was unable to take). I want to work as much as I can but of course put my health first. I want to keep the stress level at a minimum for obvious reasons.

That's all I've got for now--should be a busy weekend with holiday stuff and friends in town. Good to keep me distracted. Please keep the comments coming and ask me questions if you have.

sleep!!!

2005-12-10T09:19:00.000-08:00

I wanted to write a quick post to let everyone know that I slept last night for the whole night (9 hours!!!) for the first time in a week. It felt absolutely incredible. MMM...sleep. *sigh of relief*

the other stuff

2005-12-08T09:25:00.000-08:00

One thing about cancer treatment that I always feel like people don't get is how it's so much more than just the cancer. Treatment often causes side effects that can turn into entire medical issues in themselves. For example, during the treatment for my first tumor last fall, I developed hyperthyroidism and it took them a long time to diagnose. It was miserable and crazy--like couldn't sleep, even with medication, loss of appetite, nausea and vomiting, and all kinds of other side effects that were likely caused by the intense radiation I received as part of my treatment. Hyperthyroidism is basically when your thyroid (a gland that controls all kinds of important stuff in your neck) lets out all of its storage at once and you go crazy. That's what it felt like to me at least. HyPOthyroidism is more common from radiation, which is when your thyroid function is underactive leading to lethargy, etc.

The reason I bring this up today, is because here I am not even in treatment yet, and I've been at the hospital every other day for something or other, some appointment with a specialist or some kind of test. They do a lot of baseline testing to see where all your normal body functions are before they start treatment so they can monitor what is going on in your body througout the process. This morning I got tests done on my breathing capacity and my heart--a Pulmonary Function Test and a Echo Cardio Gram. They were painless and easy, but still just one of those things I don't think people always understand.

I am happy to report that I am back in reality today after spending the better part of the past week in bed with pain. My pain medications are very serious shit--Oxycottin which I take twice daily every day to control symptoms, and OxyCodone which is for what they call "breakthrough pain." These medications themselves, because of their strength, cause various side effects many of which are unpleasant, but lucky for the patient they just give us more meds to control those side effects--so I am on 3 additional medications in varying doses and regularity to prevent the uncomfortable side effects from the pain meds. This morning at 5 in the AM I had to do what's called a Fleet Enema. If you don't what that is--DON'T ASK! If you do, then you know what I'm talking about. :) Very uncomfortable, but it had to be done. As of now, all is good. I have not been having to take any breakthrough meds--it just helps me walk more normally.

Next up on the cancer agenda is not until next Wednesday when we meet with the "transplant team" that will be performing my stem cell transplant (where they take stem cells out of my vertebrae, store them, do some strong chemo, then put them back to prevent damage). This is not actually taking place until after 2-4 months of oral chemotherapy which willl likely be starting Monday, December 19.

the plan

2005-12-06T18:31:00.000-08:00

Well, not real sure if I am up for writing this now, but I really want to anyway. I'm laying in bed again, on a lot of strong painkillers which are not really working to my satisfaction yet. I have not been able to sleep for 3 nights due to the pain in my lower back and pelvis. It hurts to move out of bed at all--it's crazy, it feels like I have severe arthritis.

Today we went to the Oncologist, Dr. Linette, and got the basic plan outline that he has come up with collaboratively with the rest of my medical team. Obviously first things first, we are working on finding a way to get my acute pain under control. Previously as I mentioned, I have been perscribed Ultracet and Vicodin which were working fine for my occasional pain up until Sunday like I mentioned in my last post. Since then, they have only been working minimally and so today he perscribed me some OxyCottin and OxyCodone. These are about as strong as it gets I think at home, but sadly they are not working yet. It might take a few doses for them to start. If I am not getting relief by end of day tomorrow, I will ask to be admitted. The pain is from tumor that is irritating nerves in my spine and pelvic area. I got a chance to look at the PET scan films today, and saw very well defined tumor in 8 of my vertebrae and also in my hips and pelvic area. This explains the intense pain. I am confident that the docs will help me get this under control, for right now it is agonizing.

The short version of the plan is for me to meet with a team of transplant physicians as soon as possible. No, it's not the kind of transplant that you are thinking of--I won't need anybody's anything. For the second half of my chemotherapy, it is my understanding that they will extract my bone marrow out of my body and store it cryogenically while they perform intense chemotherapy to my vertebrae. This is a fairly common procedure they say and doesn't involve any pain. They remove the bone marrow/stem cells to prevent them from being damaged by the chemotherapy.

Before this whole thing, I am doing 2-4 months of regualr strength chemotherapy to try and shrink the tumors. If it does, then we will continue with the transplant procedure; if it doesn't then we will reevaluate the plan. When/if they do end up doing this transplant prodecure, it is not a surgery, but an inpatient thing nonetheless. I will in fact be in the hospital for 2 full weeks in order for them to complete the procedure. I met one of the doctors today at my appointment that would be doing this and he seems great.

I love my nurse and my doctor--they are so professional and attentive to my needs. Our family is of course reeling again. I feel so mortal with this pain, it is unreal. I just want it to go away cause I have so many other things to think about. Besides all this, the pain medications have some real unpleasant side effects which I have experienced before. Bathroom stuff, dry mouth, dehydration, etc. It's awful.

pain

2005-12-05T15:07:00.000-08:00

Beginning this past Sunday morning (yesterday), I've been having some intense soreness and pain in my lower back, hips and thighs. It feels arthritic almost and I think it's aggrivated by the cold weather we are experiencing here. Today, I had to call in sick to work--I could barely get out of bed. Of course I spoke to my doctor and he said to double-up on the Vicodin if I felt comfortable doing so, and that he couldn't perscribe anything stronger until our appointment with him tomorrow (because for anything stronger, you have to bring in a written scrpit, not call in).

The pain improved greatly when I did take two Vicodins (1000 MG per dose) but alarmingly enough, it didn't go away completely. It freaks me out because the pain is so sudden and so unexplained. I just woke up after a night out with my friends and was hurting bad. I only had a few beers too, so it is unlikely to be related to that. Since I've been laying in bed all day, I have had plenty of time to imagine the worst--fast growing tumors spreading throughout my lower torso. But in reality, there is no sense in playing guessing games about what this is and what can be done about it. We will find out tomorrow. It's just so awful!!!!!!!!! Ugh.

Needless to say, I am also having trouble sleeping even with medication. The main problem is my own fault--I have never been able to sleep on my back, which is the way you are supposed to sleep (either that or on your side). The only way I am comfortable sleeping is on my stomach which is real bad for your lower back so I have been struggling at night. Hopefully we will get some good news tomorrow when we meet with Dr. Linette, my oncologist, tomorrow afternoon.

Thanks so much for all of your positive thoughts--in the blog, my email and in person. I love you guys!

Well, here we go again

2005-12-02T13:41:00.000-08:00

Well damn. Here we go again. This is the official blog of my second bout with cancer. This is my first blog experience ever, but I am a veteran journal-keeper and a professionally trained writer, so hopefully that will help make this worth reading.

I'm gonna try to keep it positive as much as I can, but more than for you, this is for me. This is therapeutic. I have found journaling in the past to be a very therapeutic experience for me...I've always liked writing and I've always liked attention, so maybe the combined attention (you reading this) and writing (me keeping up with this) will help me get through this.

I am going to keep the history to a minimum assuming that most people reading this either know me or know someone that knows me. I have a very short, but surprisingly crazy health history. Before May 2004, I had never had any major health problems. In fact, I was probably the healthiest person I knew in college. I have no family history of cancer or any other major illnesses.

Suddenly in May 2004, the week of my college graduation, I was diagnosed with a malignant brain tumor, called a Medulloblastoma. I underwent surgery, craniospinal radiation, and a full course of chemotherapy--four rounds. My cancer went into remission in February 2005.

My hair grew back and I moved on. Way on...but apparently not far enough. After finishing an internship at Adamson Advertising in St. Louis, I spent the summer as the program director at Camp Taum Sauk on the Black River in southeast Missouri. Shortly after returning, I took a trip to New York City with a camp friend and returned and started my first full time job search at home here in St. Louis. My intention is to take a full-time position in my industry (advertising) here at home for a year or two and then move on to somewhere else--DC seems to be my first choice. After 3 months of job searching, I received two offers in the same day--one that I accepted. The same day, I was diagnosed with cancer again.

My brain tumor has likely recurred in my back and some other bone structures in my body. I say 'likely' because we are still in the diagnosis process. It's very long and drawn out because obviously the doctors want to make sure this is what they think it is--a recurrence of my Medulloblastoma. There is a small chance that it's a completely new kind of tumor, and an even smaller chance that it's not a tumor at all, but rather some other kind of scar tissue related to my intense spinal radiation treatment.

The symptom I originally presented with a few weeks ago was back pain that felt like a muscular-skeletal problem that I have been dealing with on and off in my upper left trap and rhomboids throughout the last five years. (For my college friends--remember when I rode my bike to the chiropractor freshman year!?, yeah, that one). I have sought chiropractic therapies from various practitioners 3 different times over the past five years and attributed this most recent flare up to some intensified weight-lifting I did at the gym four days prior to the intense pain. Over the past two weeks, my back pain has gradually and intermittently subsided, while at the same time spreading to different areas of my torso. It seemingly traveled south--to my hips for several days, then my thighs, and most recently my groin muscles. For the past two days I have had no pain at all.

To deal with these symptoms of course, I have been prescribed different painkillers, some narcotic, some not depending on my situation. Of course, if I am at work or driving around, I am doin the non-narc stuff, if needed. If I'm laying in bed all day or going to bed at night and I have pain, I take the Vidocin. I mean, why not? But like I just said I have had no pain in recent days and have only taken IB Profin at bedtime. Until tonight of course...

Okay this is getting long but this is just the first post, so don't worry they won't all be like this. Like I said we are in the process of a diagnosis. What that means is a shitload of tests and procedures to determine what this is in my body. The past two weeks I have had two MRIs on my spine. Today, I had two procedures--a bone needle biopsy in my lumbar spine where they think they see tumor, and a lumbar puncture which will see if there is tumor in my spinal fluid. I also recently had a PET scan which is where they inject a radioactive isotope into my body that is attracted to different suspect processes occurring in the body.

This is where we are at now--there is something in there, but we are not quite positive what it is. I'm not in any pain, except for the acute pain of having two needle procedures on my spine today. I am taking it easy in bed--did all day today and will do all day tomorrow, minus a couple hours for a job related meeting.

Next up on the cancer agenda is healing the minor pain from the needle biopsy and lumbar puncture (AKA spinal tap) which should subside in 4-5 days (Monday). I will not know anything else until our appointment with the oncologist, when he has had time to view these results and consult with the rest of my medical team on the best course of action. It looks like the plan will be chemotherapy beginning shortly--as soon as next week. Not sure how long that will last.

Besides today and tomorrow when I am supposed to take it easy, I am trying to keep busy with substitute teaching. I am also working two shifts a week at The Center and picking up more when time allows. I am not going to go into details about job stuff on this blog because I am keeping a whole separate journal, that is huge (like 50 single spaced pages) and of a more personal nature. Some people have been reading it and giving me feedback on it--it's been my little way of keeping sane during the job-search process, a kind of unemployment journal, even though I have been technically employed most of the time. Just not exactly what I call a real job.

Okay enough for now. This should be good to get us started. If you're not overwhelmed yet, you should be. As I lay here flat on my back with one of my dad's laptops perched on my belly, I am kind of emotionless. I think I am just kind of in this state of antidrama and instrospection about how I am going to do this again and still feel like I am moving forward with my life. Please feel free to post feedback or just read it. Welcome to my cancer treatment experience--round 2. I beat it before and I can do it again...with your help.