The numbers... We are always interested in the numbers. And the doctors are interested in the numbers as well. The numbers come from lab results, largely lab tests of my blood. These numbers give important clues to how I am doing internally. They are valuable. We also give a lot of emotional weight to these numbers, and sometimes they go up, and sometimes they go down. If the numbers improve, we get happy. If the numbers show a decline, we feel sad. The odd thing is that often the numbers do not reflect how I feel. Right now one of the numbers that they look at his my hematocrit. It measures how many red blood cells I have. When the hematocrit goes down, I need a transfusion of red blood cells. In spite of that number going down I often feel just fine. I can't tell that my numbers have gone down until labs come back.
It is astonishing the number of tests that the doctors can request just using blood. It's also a bit alarming the number of tubes of blood that they sometimes draw from me when I go in. On my last visit to Dana-Farber, 11 tubes of blood were drawn to be used in tests. Each one of these test results has a number or describes a condition. At this point in my medical education, I know the meaning of about half of the tests that they do. Which also means that I know whether the number going up is a good thing or a bad thing.
Following the numbers can be a lot like riding a roller coaster. There can be a lot of excitement in the up and down. Let me give you an example. For the last few weeks I have needed a transfusion of red blood cells during my visit on Monday, while on the following Thursday my numbers were fine and I did not need a transfusion. This pattern repeats itself: Monday transfusion, Thursday okay, Monday transfusion, Thursday okay. Keep in mind, as these weeks go on I feel pretty darn good with low counts on Monday and do not feel noticably better on Thursday when my counts are up.
The purpose of all of this medical intervention is to have a successful recovery. My son Robert likened this to watching the stock market. And our nurse practitioner, Melissa, was quick to agree with him. The investor is looking for overall growth in his portfolio. Small day to day fluctuations in the value of a stock are less important than the long-term trend in the value of that same stock. What we hope for, what we look for is a steady trend, a durable trend, that takes me from the point of hospitalization to a full recovery. When I step back and look at the lab results since the beginning of July, I see that there has been a steady, though bumpy, trend of improvement in all of my counts. What I see is that my portfolio, my medical portfolio, is looking pretty good.
One other measure of how I'm doing, is that I had been visiting Dana-Farber twice a week. This week is the first time that I have only one visit. A visit to Dana-Farber is a whole day affair, not having to go for my regular Thursday visit will be a real treat. What will I do with the time?
5 comments:
Oh my! NUMBERS!!! I HATE math but I like the fact your nombers are improving. Let's see time on your hands????? You could draw, write, create and/or rest! How about writing a conceptual physics book??? I'm sure yours would be full of "hands on" stuff!! I'll keep you in my prayers. I enjoy reading your blog. Peace Sue Gird
Hey Jeff,
Your comparison to the stock market is right up my alley :-). But I hope it's not too exact. After this week, with all the volatility, I can picture you bouncing back and forth from floor to ceiling. The bottom line sounds good, though...slow and steady upward trend. That's what we like to see. Would that my stocks could do so well! Take care. We will keep you in our prayers. Cliffinator
"as well" :-) Cliff
Hi Jeff, So glad to read your upates. Some news from the outside world...school has begun. The freshmen still look like freshman and many of the seniors still need haircuts...but Denise Allain is on it! Not too many schedule changes yet on this first day with kids so Cindy must have been working REALLY hard this summer, as per usual. Some fun personal news to share with you - I am pregnant, due at the end of January! Ian and I are both thrilled. I'm feeling well aside from terrible allergies. I too have been surprised at the foods that I've been told to avoid - hotdogs (not surprising), some of my favorite fish (mercury levels), and sandwich meat (wierd! b/c of listeria bacteria apparently.) Is it still true that you have to limit your contact with the outside germy world? If so, I thought of something that might be of interest. Read about this awhile back and thought of you. MIT offers many free video links to seminars and classes that their profs are teaching. The link to the list of options is http://watch.mit.edu/ Perhaps you can study up on your astrophysics in your free time!
I will keep my eye out for news on your blog and will of course keep you and your family in my prayers.
Peace, Kelli
Hi Jeff,
Thanks for your updates. Beautiful day. I hope that I will be able to log in today since I have tried unsuccessfully lo these many weeks. Look for package and messages from your SPM colleagues in the days ahead. We miss you and continue to remember you in thoughts and prayers. Take care. Best wishes to your family.
Love,
Patrice
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