Living with MCL

As you know, my first oncologist at Kaiser, decided to move to Corpus Christi, TX, to be close to his family. I was devastated. I had spent the better part of 3 years training him about mantle cell lymphoma, and developing a great rapport with him. He was even willing to authorize the initial treatment that I wanted, which was Rituxan alone.

I was very comfortable and content.

Unfortunately life is never fair, and last March I was forced to choose another oncologist. I chose one against the advice of one the nurses I respected a lot at Kaiser, and now I am wondering why I did that.

Just last week I had my usual blood test, and as normal, his [my new oncologist] nurse called relatively promptly with the results. This time was a little different because I forgot to ask what my platelet count was. (The platelets along with my hemoglobin, are two things I watch even more closely than my lymphocyte count, as I have been told that a reduction in platelets is the first sign of bone marrow failure.)

So I had to get in contact with the doctor again to get the results, but rather than call, I decided to email the doctor, hoping that would be faster. Surprisingly he responded fairly quickly, but with an extremely short and incorrect response.

WBC 98.4

Remember, I asked for my platelet count. So I wrote back again, explaining that I already had the WBC count, but needed the platelet count. Again he responded fairly quickly with the following response.

Hb – 12.9, platelets – 96

I was shocked, to say the least. My platelet count was 235 last month, and now it dropped to 96! In my mind, that meant I had best start treatment now, and I would have hoped that it would have sparked the same concern in my oncologists mind. But it didn’t!

After I calmed down I realized that my lymphocyte percentage was 96 also, and suspected that my oncologist, being in a hurry, made an error. I immediately wrote him back, expressing concern that after reporting a platelet count of 96, he didn’t think treatment was immediately necessary, while also pointing out that he may have copied the wrong result.

Eventually I got the correct result (224), which is well within the normal range (140 – 400), and about where it has been for the last 4 years.

Still it seems he could have paid a little closer attention, plus he didn’t even apologize for the error. If he’d only spent a few extra seconds reading my email, and thinking about his response, he could have saved himself a lot of extra time.

He seems like a nice guy, and does review the various reports I do give him on MCL i.e. treatments etc. with interest, but now I am just not sure how responsive he will be to my needs. Does he really have concern for his patients, or is this simply a job to him?

I guess I’d better go back and talk to that nurse again about what to do.

Life is so simple when you can get someone else to do your work.

David Arenson, a fellow blogger with chronic lymphocytic leukemia (CLL), does just that in what I consider a brilliant post, on the choices and trade offs encountered when trying to decide how and when to treat cancer.

While David has CLL, that doesn’t mean his thoughts are only pertinent to those with CLL. The same choices, problems and trade offs are encountered by everyone facing a life threatening disease. Just the names [of the drugs] have been changed to protect the innocent.

Read the full article.

Most Saturdays I choose to ride with one of the local cycling clubs in the area. The ride consists of an approximate 20 mile warm up, followed by 1, 2 or 3 loops (depending on the group you choose to ride with, typically based on ability) around an 8 mile circuit.

The ride around the 8 mile loop, is called the “Hammer Zone“, because that is pretty much what you do, HAMMER, or in more simplystic terms, ride as hard as you can for as many loops as you can. Speeds in the 1st group will average 30 mph with sprints to 35 mph or above. The 2nd group, the one I choose to ride with, averages about 27 mph with sprints getting above 30 mph at times.

This past Saturday’s ride was the 2nd time for Naomi and Rene, two members from “the Old Gang“, who, after much cajoling, I managed to convince to try the ride.

The first week, Naomi was a little hesitant, and only did one lap. She is capable of doing two laps, but likes to play the out of shape, not very strong rider card. You know the “I’m a female, and the weaker sex” card. I know that isn’t the case, and this past week proved I was right.

This past Saturday, Naomi was chasing sprints and closing down gaps like she was on a mission. She was actually making me hurt, so I felt no shame hanging on to her wheel (figuratively speaking, AKA drafting), and letting her pull me along for awhile. And I wasn’t the only one. There were quite a few others behind me. (I don’t mention Rene here, since he is super strong, and could even make the first group hurt, but likes to ride in the slower 2nd group. I think he gets enjoyment out of making us slower riders hurt.)

After the ride Naomi commented that when she was in front, she kept waiting for someone to come around her, providing relief from the wind and hard work, but nobody did. Unlike another club, where the guys always feel like they have to prove something to the girls, the guys in Velo Allegro, as Naomi put it

aren’t too proud to let a girl do all the work..

Well the other day I wrote about an MCL’r in Italy, who after 38 months in remission, had relapsed. It certainly got me thinking about my situation.

Then yesterday, I got the results of my monthly blood work. My lymphocytes had increased another 10K after increasing 10K the last month, and my hemoglobin was at its lowest level ever.

I still feel fine, physically that is. I also know you treat the patient and not the counts, and as my counts get higher they will likely increase more rapidly, so there is no need to worry excessively at this time. Still all this happening at one time is very unsettling. (Remember I am very superstitious).

Now I have to wait another month, for my next blood test. That sure seems like an eternity.

You know, somebody out there could Meebo Me, and try and lift my spirits!!