on the road again ...

It's official! I'll be heading back to Dallas after four-and-a-half months then I'll head to SA for a little more recuperating.

Bexxar

Okay, some catching up to do ....

On the last day of January Mom and I moved from Potter's House (the bed & breakfast of transplant patients) to the Nebraska House (the Embassey Suites of transplant patients) to get ready for my Bexxar (Bexxar is, essentially, a radiated version of Rituxan, a chemo drug that was part of my protocol last summer) treatment. Since I was going to be radioactive for the next two weeks the manager of Potter's House decided it would be best if I isolated myself as much as possible so as not to incite panic among the other residents when a glowing guest shared their bathroom. The move really wasn't so bad ... we moved from a house about four blocks away to a hotel in the hospital building that, if you've been keeping an eye on Nebraska weather lately, has been more than convenient (who doesn't love rolling out of bed, pulling on sweats and heading down for an MRI?).

The actual Bexxar procedure isn't so difficult and has few side-effects. It's much like going in for chemotherapy (technically speaking). The procedure is done over two days, a week apart. Six people (two from radiation oncology, two from radiation safety, one from x-ray and the nurse) arrive with a cart holding a lead-coated vile of radio-active Rituxan. Over the next two hours I would get a mixture of saline and Bexxar then go home. The first week was the "Cold" dose - they gave me 5 mci (milli-currie -- named after Marie Currie) as a tracer dose to located the tumor and to see how much radiation I retained over the course of the week so they could determine the correct dose to give me. The following Friday and Monday one of the radiation safety guys came to the room and checked out the radiation levels with a Geiger Counter. Interesting fact #239: My mother, who was sleeping ten feet away, got the equivalent of a dental x-ray the first two nights after the Cold dose!

I got the Hot dose the following Thursday. This time they infused me with 65 mic of Bexxar! All that radiation will hopefully find it's way to the tumor and kill whatever is left. Meanwhile, the fatigue and the abdominal pains I developed the first week got worse. And all I could do was use The Today Show, The View and What Not to Wear (I draw the line at Ten Years Younger which comes on right after) as a bad distraction.

Soapbox

Now is the time of year I get on my soapbox and extol the virtues of healthy eating (though I haven't done any research into it, I believe eating organics and avoiding processed foods can help to prevent a lot of diseases - including cancer). Last year I shared the findings of Consumer Reports' organic investigation with you (check out the archives for January if you're interested). This year yesterday's The New York Times Magazine has an interesting article on the nutritional value of food (which I think fits in nicely with the organic movement). The author, Michael Pollan, essentially recommends avoiding processed foods or, as he puts it, Don't eat anything your great-great-grandmother wouldn't recognize as food. The article goes on to discuss the rise of nutritionism or, how we've grown to look at foods more for their specific nutritional content than their taste and their whole nutritional value.

This idea of eating unprocessed food has been around and growing for awhile. I remember reading the Dallas Observer several years ago about a balding man who had been diagnosed with diabetes. He was in his early forties, not overweight and exercised and had no other symptoms of the disease. After doing his own research he decided to not eat any processed foods. His health returned to normal after awhile and the hair on his head started growing back! His doctors bought into everything but his baldness cure!

Anyway, in case you're curious, it's snowing. This is only the third time since I've been here it's snowed. I actually think the weather has been worse in Dallas than it has in Omaha! So, there!!!

Collection

Well, I finished collecting yesterday. Collecting is what we in the business refer to as collecting our stem-cells. Luckily I was able to finish in four days --- which was a surprise to many, or, at least my parents and my doctors. The average is about four days but some people finish in two or take as long as five to six days (which is sort of what we expected with me considering how much chemo I'd already had). Collecting is really no big deal --- the actual process anyway --- the results are very important. Every day I would go into the apheresis room for collection then have to get a unit or two of platelets and two growth factor shots. For the actual collecting process, a nurse would hook me up to a machine (it looks like something out of Young Frankenstein) and I would sit there for four hours while blood was sucked out of me, my stem-cells would be filtered out and my blood pumped back in. The worst part of it was that I would get really cold. They had blankets they kept in a warming oven that would help keep me warm (for awhile) and handwarmers (like hunters use when they get cold). Otherwise I just sat there. Oh, I could watch The View (the show has gotten much better with Rosie. Don't you think?)

Anyway, now it's on to Bexxar on Thursday then stem-cell transplant (which I'll probably start the day after Valentines --- I can't believe it's February already! I've been up here for three months already!!!)

Georges

Yesterday was a long day. I needed another port installed. They use this other port, a bigger, exterior, two-pronged one, during collection and stem-cell transplant. The one I have now is implanted just beneath the skin and is made to only accept one line at a time (if you look at the photograph closely you can see it on my left side, it looks like a small mound). It's been perfect up til now but is too small for the coming jobs. Anyway, I got up at 5:45 AM (!) to have the new port installed. I made it over to the hospital around seven to get an infusion of platelets (you have to have at least a count of 50 for surgery and mine was 47) then went over to the surgery center where they prepped me and wheeled me into surgery.

My big concern during surgery was that I was going to be awake during the procedure. The doctors warned me to expect a lot of tugging and pulling during surgery and told me that if I felt any pain to let them know (like I wouldn't)! Luckily as soon as they wheeled me into the operating room and gave me the sedative I was out (one of the other patients I spoke with wasn't so luckily --- she was awake during the whole procedure and they had a difficult time finding a vein to install the port! So, instead of having it implanted on her chest she has it on her neck).

When I woke up I felt a little pain (which was taken care of with some oxycodone) and looked something like the Georges Pomidou Centre.

Half-time

Ironic that I, of all people, should use a baseball (I know, I know ---- I'm kidding) football analogy as the title of this post. Hopefully this is the mid-way point in my stay here. Now I have a plan.

The past week has been a surprisingly rocky one. The pain I had in my joints on Thursday increased on Friday. The pain woke me up during the night, made it difficult for me to sleep and threw the progress I've made in my walking back a month. After a visit to the PA it was determined that the likely culprit was steroid withdrawal (I stopped steroids on Wednesday) and she put me on Oxycodone (a pain killer). The pain was gone by Sunday. Funny thing about these steroids, I never felt the affects of them until after I finished taking them (and, no, I'm still no Schwarzenegger). Saturday my friends James and Amanada and their precious son Charles arrived with the snow. When we weren't visiting I was sleeping --- I haven't slept so much in a long time. Well, Monday when I went in for routine blood work my counts were low. Very low. When the nurse got the results she was surprised I came in walking and talking. So, I spent the rest of Monday and all of Tuesday getting transfusions - four pints of red blood (each pint takes about two hours) and two pints of platelets (they can run those a little faster - so it only takes an hour a pint). Then Dr Vose, concerned about my low counts, ordered a bone-marrow biopsy and a CT scan since she wasn't sure what caused this drop. Have you ever had a bone-marrow biopsy? Trust me you don't want one --- they're two minutes of pure pain.

Friday we found out that Martita was not a match. She only had a 25% chance of being one. Interesting facts: pregnant women aren't good donors because they're carrying around the stem-cells of two people. Generally, if both a brother and a sister match the doctor will choose the brother(who has a better likelihood of matching)! Anyway, not a concern --- we go back to using mine. I start growth hormone shots (and probably joint pain and Oxycodone) tomorrow, Friday I'll have a new port installed (I sound like a car) then Monday I'll start collecting stem-cells. After that I'll get an infusion of Bexxar, a radiated medication, then start the stem-cell transplant. Should be fun but I'm on my way and the end is in sight!

Lincoln

Most of December was spent waiting. Waiting for lab results, scan results and other reports. Yesterday, Mom, my Aunt and I went to Lincoln for the day. It was a good way to enjoy some free time on a beautiful day. We went to some antique malls, drove by the Penis of the Plains (the State Capital) and went to the National Rollerskating Hall of Fame --- we had a great time!

Tomorrow I'll find out if Martita is a stem-cell match and then hopefully I'll have a plan for what's going on the next month. Then most of my waiting will be over!