Mosaic of Hope

Friday and today were uneventful. I'm still swollen and red, but I'm beginning to feel as though I'm getting past the side effects of the radiation. I had a killer headache today, which afforded me the chance to sleep in a little bit and just take it easy. The doc ordered a CT scan to be sure the headache, which has been recurrent since I arrived, isn't related to something larger.

I've been able to ride the stationary bike every day, so to those who are wondering, you can get exercise in the hospital - you just have to put up with a certain lack of scenery.

I also took a picture of some the inspirational artwork we have in the corridor. It cracks me up every time I walk by it. I had to share, since I can't be the only one who appreciates the humor of it :)

 

Roaming the halls

Yesterday we infused the second four bags of stem cells and afterward I took a little roam around the transplant floor.  The floor is divided into two sections, based on the source of the cells the transplant patient is receiving. Autologous transplants (self donors) are in my section, which faces I95, and allogenic transplants (having stem cells donated from others) are on the other side, facing Broad Street.

I didn't sleep much last night, and so have been a little groggy today. I've also received a second round of Palifermin shots, which has turned me beet red again and made me more than a little bit puffy in the face. But at least I still have my hair. :)

All of this was more than made up for by an all-day visit from Jane which has done wonders for lifting my mood.  It was nice just to sit and talk and hang out. She'll come by again tomorrow before going back to C'ville to relieve my parents who have somehow occupied the kids for 2 days.

I took a few more pix of my new accommodations.

Entrance to the transplant unit

Corridor view from the autologous side

Corridor view from the allogenic side (facing Broad Street)

Corridor view of the roof of the Egyptian Building and State Library

Transplant day - Day 0

I woke up feeling wrecked yesterday with a headache, and all manner of aches and pains. But  no worries. 'Why?', you ask? Because yesterday I began my transplant (day 0). What is day 0? It is the day on which all of the chemo and radiation have been purged from my body, and the day on which my tabula rasa of a body gets a fresh infusion of stem cells. More to the point, it's the day the doctors save my life, because without stem cells, my body will no longer be able to produce healthy blood cells. So for me, it's a big day and a cause for celebration, and it coincidentally falls on Fat Tuesday and Ash Wednesday.

In the transplant unit, they refer to day 0 as your birthday. So now I have two birthdays - one in Sept and one on Feb 24. 

So how did the transplant happen? Well, a dewar filled with cryogenic liquid and plastic packets of my stem cells were brought out of the cryo-tank. The packets were then immersed in a warmer to prepare them for transplant.  About 5 minutes later, after a little prep work, I was infused by means of a drip IV. 

An interesting note is that the preservative used to keep the cells in suspension leaves a strange taste in your mouth. The flavor is not unlike oysters and garlic, though not in any way I'd consider pleasant. The docs recommend sucking on hard sour candy to get rid of the taste. That works fairly well.

 

The cryo-dewar holding my stem cells The warming unit (with green tag)

And that was it! The first half of the cells were infused yesterday - the second half will go in today. 

Now where are my Mardi Gras beads?

Day of Rest (Day -1)

Today was my day of rest and, more importantly, the day before my transplant. Til now, we've been counting the days down as a 'days until transplant'.(Day -3, day -2 etc.) 

Tomorrow, that day becomes day 0, and the transplant will take place. All subsequent days will be positive numbers - e.g., transplant plus +1, +2 , etc. From what I'm told, it's the process is pretty anticlimactic,  I'll just be given the cell collected last week through an IV, and then wait for engraftment. We'll see.

Not much to report around here. I got a drop off of supplies - clean clothes, fresh slippers, etc, today from Dad and Steve (my uncle). Thanks guys! Otherwise, today I kinda just vegged out. It's been a little difficult to concentrate, mostly due to all of the medicines I'm taking and the funny state of mind they're putting me in.. I hope the blog isn't proving too difficult to read. 

My days mostly revolve around getting tests, reading, watching movies, and taking entirely too long to do all of the things that should only take me one minute. I've got to say, I don't feel like I'm at the top of my game. There is an exercise bike in my room though,  and I've been able to give that a ride every day for a half hour or so. Also, my dad brought down the Wii, which I'm going to attempt to wire into the hospital tv. Not sure whether that will work or not. Will keep you posted on that.

In exciting non-me news, two separate friends have had children this week! Congrats Tom and Angela and Arthur and Ru-Yi! What a week!

Thanks again to all of you for reading, and for your kind words, help, and prayers. 

Chemo begins (and ends)

Radiation is over, and I'm fried from the inside out. While I feel a little toasted,  I'm told that the 'sun' tan from the radiation has dimished a little bit, and that I'm looking a little less pink. 

Yesterday (Saturday) I started chemotherapy. Cytoxin for two days, which I finished up a few hours ago. 

Tomorrow is a rest day, which means no addtitional treatemnt.  I'm grateful for that. 

 

Radiation Day 3

I'm now out of my 5th radiation treadment with only one more to go. I'm kind of beat, and don't feel too swell right now, but I've still been able to get up and ride the exercise bike. Also, it's early still, with no coffee allowed, so I think a certain lack of enthusiasm is understandable.

Jane is coming up today, so I'm pretty excited about that. I may also have other visitors, as energy permits.

It's been a good time to catch up on movies and tv and books.

I just finished my last treatment an hour or so ago - so no more irradiation.. Woohoo.

 

BTW, I found a great wikipedia article on TBI - http://en.wikipedia.org/wiki/Total_body_irradiation

Now that it's done, I found it surprising to learn that 4.5 Gy is the LD 50 dose. Having had almost three times that, I hope this stem cell thing goes works as planned. You gotta love modern science :)

A date with the accelerator

Yesterday morning was my first day - 4:00am came early.  Funny, but I was wide awake long before the alarm clock rang. We packed up, I said my goodbyes to Jane, the girls (who were still asleep), and my mom. Dad and I  then drove to Richmond. Check-in was quick and I was unpacked in my room in less than a half hour. This room and this floor is where I'll be spending at least the next 21 days. I can't leave the floor without a doctor's note. This is my new home.

Fortunately, I think I'll be able to hook up the wii to the television, and the nurses brought me an exercise bike.

   

My room... With a view...

Radiation was next - my first two grays with no shield. It's exactly like getting an x-ray, except where an x-ray makes the quick click-buzz-click, the buzz goes on for four minutes, and is repeated 3 times on both the front and back of the body. 6 exposures total, and you're done until the next session. My first session was uneventful.

'Meet my little friend'

Dad and I hung around for a few hours while waiting for the second treatment. Throughout all of this Jane and dad and mom have been great, ferrying me around and sitting with me during the procedures, or watching the kids while we run out. I have a great family.

The second session, using the shields, didn't go as smoothly. About 1 minute into the first exposure I became a little nauseous and dizzy, and we needed to stop the procedure. I think my blood pressure was a little low, and since I'd been standing at attention for a half hour (Total Body Irradiation is a stand up procedure), I think the blood had drained from my head.  At any rate, we were able to continue after a couple of rests, and the remainder of the treatment went ok.

Just for reference I thought I'd do a before and after picture, as well. So, here is me as of yesterday morning.  A subsequent picture taken this morning have me looking a lot more tan :)

Final days of freedom

Sunday and Monday this week saw me in the hospital waiting room to get more shots and some last minute tests to make sure nothing was amiss. As of today, I'm clear to begin the process tomorrow. Tomorrow at 6:30 am, I'm to show my smiling face to the receptionist up at the admissions desk at MCV. There I'll be admitted to begin my therapy. On the agenda for tomorrow - radiation! More on that tomorrow.

Sunday, after our hospital visit, we visited my grandmother in Chesterfield, and drove by my childhood home. We then took the kids to the mall playground to run off a little energy. We closed out the evening at a great Thai Restaurant in Shockoe Bottom - Alex's Thai. Definitely a value if you're in the area.

Monday ran a little long at the hospital due to some issue in the pharmacy. After we were done, we visited a candy shop in Carytown. This place was fantastic, and had a better selection of candies than any shop I've ever been to. Being partial to sour gum, I picked up some crybabies and sour Razzles - "First it's candy, then it's gum!" We also picked up some ginormous lollies for the girls. After that, we hit my favorite brewery of all time - Legend Brewpub. I've gone there only a few times, but every visit has improved my opinion of the beer and its brewer. They had a great selection, and all of the beers were delicious. Since they offered their beer flights in mini-glasses, I was able to sample several beers without needing to be carried out on a stretcher. Being partial to hops, my favorite was the Hopfest, it has excellent body and citrus hop flavor. Also of note was the ESB (Extra Special Bitter), which is a supercharged, high gravity English bitter.

When that was done, we decided to skip the next two nights in Richmond and head back to Earlysville to allow everyone to get settled before the big event. I think we were all glad to be back home, if only for a little while. Margaret was definitely excited to go back to school today, and Madeline got to play with grandma all day.

As for me, today dad and I ran back to Richmond for the final Palifermin shot. He and I will repeat the trip tomorrow morning, and that time I'll be staying for the long haul. It was terribly sad to have to say goodnight to the girls this evening, as I know that it will be some time before I'll be able to see them again. But we must press onward. 

Thanks again to all of you for your support, kind words, and prayers. I do appreciate all that so many of you do and have done to show your support and friendship.

Tomorrow, we'll get this thing started.

Coraline, Tapas, and the Science Museum

Last night was my last evening in Charlottesville for awhile. Jane and I went out, picked up some last minute  supplies, caught a movie, and had some tasty tapas at Si, in downtown C'ville. The movie was Coraline, adapted from the Neil Gaiman book. I read the book when it first came out and so I was anxious to see the movie. I was not disappointed. It was in 3-d, which was nice, but I enjoyed the animation and feel of the movie much more than the 3-d gimmick. It's gothic and dark, but a great watch, and pretty faithful to the original storyline.

Today, it was off to Richmond, and after my Palifermin shot at MCV, we went to the science museum of Va. I went there lots as a kid, and loved it, and it's done nothing but become more interesting. More exhibits and more science. I rode a Segway, we saw a man dissect a sheeps heart, and solved a load of puzzles.  Then, off to Shockoe Slip for dinner. We had a great time today. 

A new suit

Peripheral stem cell collection ended on Tuesday promptly at 2:30pm. The Neupogen must have worked, because from what I hear, there were plenty of cells. 

I then went to the basement to meet with the radiation oncologist and be fitted for my new suit. Here's what he told me. Radiation will be given to me over three days at two doses per day Tuesday through Thursday, for a total of six sessions. Four of these six sessions will be given to my entire body, with no shielding, i.e., no part will be unexposed. To help minimize the damage, two of the sessions will be given with shields over my lungs, for which I had to be fitted. These shields are custom made (like a fine lead suit) and required an x-ray to determine their precise size and shape. When all is said and done, total I'll have absorbed dose of 12 grays of radiation. 

For reference, a gray is the standard unit of absorbed radiation from ionizing radiation. While reviewing Wikipedia for info on the gray I got an idea of exactly how much radiation I'll be getting. It's kind of funny. During my initial treatment and subsequent scans, I was always concerned. I'd ask myself - 'am I getting too much radiation from this', or 'I hope that all of this additional radiation doesn't give me some kind of cancer' :)

It turns out, that my fears were unfounded, or at least, irrelavent. 

In a casual search of the literature on the Internet I find that the dosages from x-rays and CT scans are measured in 10s to 100s of milligrays. So the total exposure from my 10 or so x-rays and 9 or so CT/PET scans don't even begin to approach the level I'll be exposed to next week.  The list of possible side-effects were enough to make one cringe, but then again, the primary side effect of a relapsed Lymphoma is a good deal worse.

So I now have my schedule for next week. Saturday through Monday I get another fine product of our pharmaceutical research industry - palifermin (Kepivance). This is intended to reduce the one of the primary side effects of the radiation - oral mucositis. My understanding is that this is a pretty bad side effect to get. On Tuesday through Thursday, I get radiation.  One day off, and then the high dose chemo starts.

More later!

Collection

Since Friday, I've been taking neupogen to  mobilize my stem cells for the transplant. This week, I'm in Richmond at the Apheresis unit for the 'Collection' phase. I'm hooked up to the apheresis machine for 5  and a half hours each day to centrifuge the stem cells out of my blood. The goal is 5 million cells. I'll find out this morning how yesterday's collection went.

Fortunately I have wireless access and Netflix and books to keep me occupied. It is draining, but not difficult - all I have to do is sit and wait. 

We're staying in a Mariott suites off of broad street - one with an indoor pool. I'm pretty excited about that, because although I can't go swimming (due to the tubes), the girls are totally amped to get in the pool. As a kid I always loved hotels with indoor pools.

12:45 - Late breaking news: the cell count from yesterday came in and it looks like we've already collected 3.5 million cells, which the nurses tell me is exceptional. I'm also to meet with the radiation people today, after I'm done with the collection. More on this later.

Daughter Dance

Yesterday was the Valentine's daughter dance at Margaret's school.  She and I both dressed up and danced the night away - at least until 8pm. It was a great time - it was wonderful to see her with her friends, dancing and playing and having a great time. It was an evening to remember. 

The journey begins

Today, my journey on the road to stem cell transplantation began.  We started out for Richmond early, about 5:30 in the morning, to make a 7:30 appointment at the Bone Marrow Transplant unit. The purpose of the visit was twofold; to begin getting Neupogen shots to boost the number of stem cells in my blood, and to put in more ports to enable the apherisis machine to collect my stem cells. Since I'll be getting shots all weekend, Jane also needed training in administering them. Her first efforts went great, and my arm isn't the least bit sore. She's like a professional.

As a side note I'm getting double the Neupogen dose that I got during chemotherapy. It'll be interesting to see how that treats me. When I took the Neupogen before, during my first round of chemo, the shots had the principal effect of making my bones feel like they were going to pop. 

The new ports (they call them catheters) were put in while I was under conscious sedation. In short, it wasn't a bad procedure at the time. That changed when the sedation part ended, and I moved back into the realm of consciousness. So here I sit with a throbbing in my chest. I'm sure it'll get better with a few days of rest. We also have an exciting weekend planned with the girls, and that will usually take my mind off of the little aches and pains.

Wii hoo!

Nothing medical of note happened today - no complaints there. 

Of note was a surprise gathering at the office of a bunch of friends. It was really great, and I was blown away seeing so many people there to offer their support for my upcoming trips to Richmond. It's really humbling to see that many people come out to send me off. And, not to miss the really cool element - they got me a Wii and a bunch of games, to support me in my convalescence.  I've been talking with Jane for some time now about getting one, since I'll need exercise and some mental stimulation while confined. I think this will help :)

So today was lots of fun. It was kind of like a get well soon party, where you don't have to be sick to enjoy it. Thanks a bunch everyone who came and who sent their best wishes. I'll be sure to post high scores on the blog. I really appreciate it and hope to be back at PRA soon!

Now where's that Wii manual? Reading the manual is a first for me - strangely enough, as a tech writer by trade, you'd think I'd eat that kind of thing up. Nope. I hate manuals. They're dull, often inaccurate, and quite frankly, I'd rather play with a device for a half hour than browse through a bunch of diagrams to figure out how button x works. 

But for the Wii - because it's important - I'll read the manual. Or some of it...

______________

Editor's note: 

Patrick did not, in fact, bother to read the manual.

A negative PET

Well, the PET scan was today, and I got the results. There are no sites showing pickup - i.e., no activity which would indicate that the growth found on Friday is cancer. So, woo hoo! 

I'm very happy about this, and Jane and I are all smiles tonight. To be honest, the news that there might be more tumor growth had put me in a bit of a sour mood. That's evaporated, and I'm left feeling surprisingly cheerful at the prospect of heading to Richmond for some high-dose chemo and total body irradiation. :)

However, this still leaves open the questions, 'What was that blob on the CAT scan? Friday' and 'Why does this hurt so much?', I'm content to leave those unanswered for a little while. We'll be taking the scan results to Richmond for review by the transplant oncologist. We should hear in the next day or so whether we can pick up our plans to go through with the stem cell transplant. 

For now, I'm filled with lots of hope and relief. Thank you everyone for your prayers and kind thoughts. I think they might have given me the boost that I needed to get through this.