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The latest haps.

First off, thank you all for not hounding me to post new info. I know it’s been almost two weeks since the last post, but I’ve been busy. Well, as busy as a guy can be without going to work. Alright, I haven’t been that busy. But I was without convenient internet access for a week while we were out of town, so that counts for something. Moving on…

I returned to Stanford on August 10 for lab work (the usual blood tests), another bone marrow biopsy (#6!), and to meet with Dr. Miklos regarding future treatment options. The previous week’s CMV test came back negative, so the foscarnet was discontinued. My central venous catheter was removed, too. That was an interesting procedure. You may recall that the catheter was placed in my upper chest, about 3 inches below my collar bone. There’s about 12-14 inches of tubing hanging out of my chest. On the inside, the line goes into a major vein/artery (which one goes toward the heart?) and stops just above my heart. There’s at least 8 inches of catheter line inside, and there’s a cuff around the tubing under the skin near the insertion point. Think of this cuff as a hollow cylinder with the fuzzy part of velcro around the outside. It’s about 1/2″ long. Karen the NP warned me beforehand that sometimes the cuff doesn’t come out with the catheter. This is because after the catheter is installed, scar tissue forms around it and gets entwined in the fuzzy material on the cuff, functioning very much like velcro. This is part of what keeps the catheter in place for months at a time.

The procedure for removing the catheter is much simpler than that for installing it. Two shots of lidocaine are administered around the site to numb it. Karen the NP wraps the outside tubing around her hand to get a good grip and instructs me to take a deep breath. I do, and she gives a solid pull like she’s starting a lawnmower. Out comes the catheter, without the cuff. Surprisingly, I felt very little. She then tried to get the cuff out because it was so close to the insertion point. This effort consisted of grasping the cuff with clamps (see photo below) and cutting the scar tissue around the cuff with scissors. I should note that this is all done on the inside–the clamps and scissors are inserted in the hole. Alas, the removal was unsuccessful because the lidocaine failed to numb the area effectively, and Karen was uncomfortable with my wincing movements as she tried to cut away the scar tissue. So, I have a little souvenir in my chest for now. It can be removed easily when I get the next catheter installed (whenever that is), or I can schedule a minor surgery if it becomes a problem before then. All it takes is conscious sedation (not quite a general anesthetic, but stronger than a local), a quick slice with a scalpel, and some stitches. The ITA isn’t set up to do that kind of procedure.

Here’s a picture of the clamps, already clamped on the cuff.
clamps on the cuff

The bone marrow biopsy went off equally well. (Hint: that’s sarcasm.) Stanford is a research and teaching hospital, so the doc performing the biopsy brought a BMT program fellow with him to observe the procedure. Since this was Biopsy #6, I feel I’m at a point where I can evaluate and rank methods of the docs. Right now, it’s a close call between Dr. Sayegh (my oncologist at SCHMO) and Dr. George Chen (the doc who did #5 at Stanford). I have to give Dr. Chen the gold medal for a relatively low amount of pain. He has a nice touch, even though it took two tries to get the core sample. I should have remembered the joystick technique he used (remember that, Jim?), and shared that helpful tidbit with the doc who did #6. After the first two attempts at getting the core sample, he tried something different and my blood ended up squirting on the wall and ceiling. Unfortunately, I wasn’t able to get a picture of that. After the third try, he called another doc in, and that doc used the joystick technique with success. Needless to say, my lower back/hip is still a little tender. I guess I shouldn’t complain too much, because I have good bones.

After the biopsy, we had some time to kill before meeting with Dr. Miklos. We went out to the car and watched a few episodes of the first season of “24” on the laptop. Yes, we’re new to the show. We’re now about 5 episodes into the second season, and I’m not sure if I can make it all the way to the current season. I like a good action show or movie just as much as the next guy, but some of this stuff is absurd. For example, consider the bombing of CTU-LA. There’s a big explosion, the place nearly collapses, yet there’s still a functional, secure network and camera monitoring system for them to interrogate Nina and continue working on the database to stop the nuke, and George Mason’s glass office door is still intact? And the dialogue? I can’t count how many times I’ve heard practically the same line: “You have to trust me, (insert character name here, any character, just pick one.).” Must be tough to remember those lines….

Back to reality…Dr. Miklos had some interesting things to say. I have a busy day ahead of me (no, seriously, I have some errands to run), so I’ll save that for another post. After our meeting, we drove down to the Santa Cruz area for a week. We hit the usual highlights–the beach, the boardwalk, Marianne’s Ice Cream (mud pie…mmmmm), and I had my first deep-fried twinkie. I’d eat one again, for sure. We managed to polish off two packages of brownie bites during our stay between all of us (not just Jen and I!), complete with whole milk in a frosty glass fresh out of the freezer. Fortunately, there’s no trans fat in brownie bites, so it’s all guilt free! Thanks to you guys who were there–we had a great time, despite the runny noses and coughs and vomiting and….I’ll stop there. And thanks to Christina B. for hooking us up with your grandma–it helped us out tons!

I must now start my day, even though I’ve been up for 2.5 hours already.


3,100x = 20,000

X = ? Who remembers their simple algebra? It isn’t much of a contest, I know.

When I first started the treatment for CMV, tests showed 3100 copies of the virus. I don’t know why they use the term “copies”. Any virologists out there who can shed some light on this? Anyway, the test from Monday showed 20,000 copies. Obviously, the docs were concerned, and brought in Dr. Ho from the infectious diseases department. She met with us this morning at the ITA.

Dr. Ho’s advice was that the dose of foscarnet (5 grams) I’ve been getting twice a day for the past two weeks is inadequate. The docs said that they gave me that dose because my kidney function wasn’t great at the time I started. However, my kidney function now is better, so Dr. Ho recommended increasing the dose to 8 grams. My kidney function is tested three times a week, and the dose will be adjusted as necessary to protect my kidneys from serious damage. I’ll continue on the double days until the CMV tests show no copies of the virus.

In addition, they want to give me more IVIG. Instead of three days in a row, this time I’ll get the three doses separated by a day or two. I had the first dose today. The next dose will be Friday, followed by the last dose on Monday. Supposedly, this stuff gives my immune system a little boost. It had better do something for $30k a pop.

Speaking of tests, here are today’s numbers:
WBC: 2.1
ANC: 0.85
HCT: 29.6
PLTS: 140

While these numbers aren’t great, they’re up from the past week. I still have to wear the mask and follow the low microbial diet. I am slowly working back into the dairy realm, and have graduated to the point of mixing real milk in with the soy milk on my cereal. I had forgotten how good real milk tastes, especially on Honeycomb. One of these days I’ll have a chilled glass with brownies or chocolate chip cookies.

T+35: So close to dairy!

Today in the ITA, the dietitian stopped by to see how I was eating and drinking. She said I can start having dairy again at T+40, starting slowly with cheese. On the other hand, I don’t think she knows about what’s coming up for me. Really, what’s the point of having dairy (and likely intestinal distress as I ease back into it) for a couple of weeks, only to have it taken away when we repeat the transplant? I’m getting used to the soy milk, though I miss having a chilled glass of real milk with my brownies. The soy cheese is just another layer in a sandwich, and I can’t really taste it. It adds some texture, though. I really miss the fresh fruits and veggies the most. There’s nothing like a loaded salad with grilled chicken on a warm summer evening. Maybe a glass of red wine…I know, red with chicken?!?! I don’t like most white, alright? Plus, the red transitions smoothly into brownies, or chocolate molten lava cake…I need to stop now.

Back to the ITA…WBC is 1.8, HCT is 29ish, and PLTS are 116k. Karen the NP said my blood chemistry looks good, too, though I don’t know actual numbers. I’m also holding steady around 218 lbs., so that means Grandma’s cooking is paying dividends. I also took the grandparents to school playing gin while waiting for the lab results. I shouldn’t boast, but it’s not often that I defeat them with such authority in card games.

Monday brings a bone marrow aspiration/biopsy (my 5th overall) and a repeat of the blood test subsets to see the donor percentages. The bone marrow biopsy will be compared to the pre-transplant biopsy to see if the disease has progressed (probably not, says Dr. Lowsky). The subsets will be compared to the ones from two weeks ago to see if the donor’s T-cells have increased at all. My main concern is who will perform the bone marrow biopsy. Stanford is a teaching hospital, so you know what that means. I’ll probably get some rookie. Earlier this week, we had a visit from a friend of a friend (Hi, Adriane!) who went through a transplant at Stanford about a year ago. She told us that they gave her Vicodin and Valium before her bone marrow biopsies, and it was great for her. We’ll see what I get….

In closing, I’ll leave you with this picture of a local school’s playground that we drive by every time we go to the ITA. First person to correctly identify the tree species (common name is ok) and what’s wrong with the pictured scenario wins lunch on me at the teriyaki place on J Street between 9th and 10th.
playground tree

Finally, some time off…

After yesterday’s events, we decided to sleep in this morning. That means we both woke up around 7:30, went to the bathroom, and promptly returned to bed and slept a couple more hours. When we finally decided to go outside, it was already 1:00. We made our way down Santa Cruz Avenue into a part of Menlo Park that resembles downtown Davis or downtown Palo Alto. Lots of small shops, cafes, and high pedestrian activity. We settled on a place called LeBoulanger for lunch–it’s a combination bakery, coffee shop, and sandwich shop, and has prize-winning sourdough bread. I had the Classico sandwich, and Jen had a carrot cake muffin and fresh fruit. They also have a special: if you buy one of their signature desserts, you get a free coffee, latte, or mocha. I topped off lunch with a brownie that was dense but dry, and a latte. We also bought a loaf of ciabatta bread to go with tonight’s dinner. Mmmmmm, I love bread.

We also took some time to scout out the local Target store, which is a few miles down the road in Redwood City. There were a few items that we weren’t able to fit in the car–towels, antibacterial soap for me, a laundry basket, etc. Of course, we couldn’t pass up the prices on cereal. For those who don’t already know, Target has the best cereal prices, and quite a selection. I stocked up on Grape Nuts. Then we returned to the cottage for an afternoon/evening of much-needed R&R. Here are a few pictures of where we’re staying.

The guest house and rear lawn area:
guest house and rear lawn area
The pool and patio, perfect for the entertaining we won’t be doing!
pool and patio

Seriously, we couldn’t ask for a nicer place to stay during this time. Our hosts are incredibly gracious, and we are blessed. Not just to stay here, but that the bathroom is so much bigger than ours at home! No more hitting our knees on the cabinets while sitting on the toilet!

No news is good news

In the interest of brevity, and recognizing the need to get some actual work done today, I will dispense with most of the usual formalities. I will, however, extend a warm Smith-style greeting (aka shout-out) to all my homiez in lockdown, er, the new members of this list. You are all on the list because you are important to me in some way. Therefore, I nod my head slightly in your general direction, in the typical juvenile male manner that we don’t seem to outgrow.

If you saved my last update, this will not be much of an update. Yesterday’s doctor visit was uneventful. White blood cell count is around 85,000. Platelets are around 100,000. Lymph nodes are slightly enlarged in comparison to my last visit in February, which means they are freakishly gigantic to my mother (happy birthday again, Mom!!).

I interrupt this update to bring you the following public service announcement: Listen to your mother! Several months before I was diagnosed with CLL, my mother commented on more than one occasion that the lymph nodes in my neck were swollen. Of course, I dismissed her concerns with naive bravado, saying, “I’m fine.” Little did I know….

Back to business….In short, I won’t be doing chemotherapy yet. I’ll continue getting monthly blood tests, and return to the doctor in June.

On another topic, I want to express my gratitude to those who were a part of Jen’s secret plan to add to my personal electronics collection. She surprised me two weeks ago by presenting the gift to me over a shared hot fudge brownie sundae. What a glorious evening–three of my loves together in one place! I was truly amazed at her efforts to gather your contact information and mastermind such a scheme, and speechless when she told me the details. Thank you all for many different ways you have given support. For the locals, I will be hosting a BBQ sometime in the near future. You will be contacted with details.

I must now turn my attention to my job.

So much for brevity….