Since I will not be able to speak to all of you every day, I welcome you to Bald Mike’s Blog, a place where we can communicate via the amazing technology of this new fad called the internet. Contrary to Alaska Senator Ted Steven’s, the internet is not actually “a series of tubes.” To hear Sen. Steven’s actually call the internet a series of tubes (I’m serious about this), click this link: http://youtube.com/watch?v=6iMDRVzMfEM
So I post… then you all respond to me, to each other, to your imaginary internet friend, and we create a happy little virtual community where we can take care of one another (kumbaya), make fun of my soon-to-be shiny head, share meatloaf recipes, and make fun of the quickly fading Boston Red Sox.
You can do all of this by clicking on the “comments” button below each of my blog postings, and writing a-little something.
So there you have it. See you online.
After a twenty-four hour wait, the call finally came, and a lovely room with a view of the Penn medical school campus opened up. Jacqui and I are now at the Hospital of the University of Pennsylvania (6014 Rhodes Pavillion), there’s an IV in my arm, and it’s time to continue the process of de-lymphomatization, or, in other words, time to get this nonsense out of me.
So here we sit, having just told a nurse the time of my last bowel movement, waiting for my first chemo order to be filled. The chemo will be “delivered” twice a day in a two hour drip. The nurse doesn’t expect me to feel too bad this cycle, and is sure that we’ll be on Cape Cod late Saturday night for a little R&R.
Most of you probably think that either a) I am completely insane for joking my way through lymphoma OR b) I am in complete denial for joking my way through lymphoma. I would suggest, instead, c) that the best way for me to slay this beast is with determination, optimism, and laughter. I have no doubt in the outcome, but I do recognize that there are peaks and valleys ahead, and that sometimes the space between the two may seem vast. But with my wife by my side, with a baby on the way, with my side kick Otis making me laugh, and with all of you standing by, the ride will be much smoother than it would be if I were facing this alone.
Have seen enough reruns today of Quantum Leap and Star Trek to officially qualify myself for world’s largest uber-nerd. Just got a call from the doctor, should be called in in a few hours.
Oprah’s on, will update later…
This is getting ridiculous. Let’s get this show on the road already.
I am going to the gym. This sucks!
No bed available. Another day till they juice me. Happy to have a night at home. Went for a great dinner. Looking forward to throwing it up tomorrow once this all gets started.
Rituximab 1, Lymphoma 0
Today I received my largest dose of rituximab. Rituximab is a genetically engineered monoclonal antibody specifically targeted to the CD20 antigen on the B-Cells involved in my lymphoma. Just over an hour into the treatment I started to cough uncontrollably, which was followed by a spike in my temperature and severe chills that left me shuddering for almost thirty minutes. It was not painful at all, and, because the reaction meant that the drug was doing its job, it actually felt good to be coughing and shuddering like crazy.
As soon as the infusion ended, all the effects wore off.
After the treatment, Jacqui, my mom and I went shopping for baby furniture. We bought an adorable set, and can’t wait to meet the little Yudell/Rick that will sleep in it. The baby is due in three months, and despite all of this lymphoma nonsense, all I feel is joy when I think of what is to come.
The first hookup was 25mg of benadryl, followed by 50 mg of rituximab. For a few moments at the beginning of the benadryl, I could taste the medicine. That passed quickly. The benadryl made me feel like I weighed 300 pounds and was moving in slow motion. No reaction to the rituxan after 10 minutes or so. Hopefully, it stays that way…
20 minutes in and all I feel is tired from the benadryl. Nothing uncomfortable so far… 40 minutes in. Ready for a nap… 15 minutes to go. Benadryl is mostly worn off. Not feeling so tired. No adverse reactions to the drug.
All of this is so bizarre.
How can someone feel so healthy, yet be sick? If I hadn’t been such a neurotic freak, poking at a slightly swollen lymph node in my neck, I probably wouldn’t be sitting here right now, and the lymphoma would just be doing its thing without me knowing it was even there.
August 25, 2006
Dear Friends and Family,
I write with a bit of difficult news that it is unfortunately time to share with you all. As most of you know, almost a year-and-a-half ago, just a few weeks after my wedding, I had a suspicious lump removed from my neck. The lump had already been there for two years prior, several doctors insisting it was nothing. Well, it unfortunately turned out to be something as I was soon diagnosed with non-Hodgkin’s lymphoma.
The subtype of lymphoma that I have is, in most patients, very aggressive. My doctors found, however, that I am part of a small subset of patients where the disease remains in what is called a “low-grade state,” and thus treatment could be postponed and I could be monitored through scans, blood tests, and doctors visits to check the progress, or lack there of, of my disease. Low-grade lymphomas grow slowly, can be amenable to repeated treatments, and can be managed as a chronic disease over time. And thanks to very recent pharmaceutical advances, many lymphoma patients are coming to live long lives.
This past year, after a lifetime’s worth of doctor visits, scans up and down the wazoo (where a doctor found the Aquaman action-figure I swallowed 33 years ago), and my blood drained several times over, I have learned a lot about living with lymphoma. I have met wonderful doctors, nurses, technicians, and other hospital staff. I’ve seen other lymphoma patients and their families waiting nervously in waiting rooms. I’ve seen patients sick from chemotherapy. And I’ve seen patients who are thrilled from the news that their disease remains in long-term remission or is now considered cured. But what is most important to me, my wife, and our soon-to-be child, is that despite the occasional lymphoma speed bump, I should get to live to be a creaky and cranky old man who complains loudly about things like drafts from the air conditioning, the pastrami being too fatty or too lean, and the fact that kids today don’t know from good music or movies!
Since my diagnosis, I have been followed carefully by my doctor at Penn. The minimal disease I have has been stable. Last month, however, my scans showed a very slight change in my condition and my doctor felt like this was a good opportunity to possibly cure me, but certainly knock the disease away for many years to come. Yesterday I began my treatment as an outpatient, but starting Tuesday I will receive a heavy-duty chemo regimen that will require a three-night stay every three weeks for six months at the Hospital of the University of Pennsylvania.
The worst of it for me will be the three nights every month when I have to be away from my now very pregnant wife, my soon-to-be first born, and our dog Otis. Yea, I’ll lose my hair (feel free to make fun of that), throw up sometimes (watch out!), and be pretty tired, but most importantly, the doctor has assured me that I will be able to be at the birth of my child (in early December) and that I will be a father for many many years to come. There are no guarantees in this. My lymphoma is, after all, an often deadly form of cancer. But I joked with him last week that all I wanted from him was to dance at my first-born’s wedding, and then I’d be happy to plotz (hopefully after dessert). He was very hopeful that this will happen (save the plotzing part).
The coming months will be trying and I will not be able to be the friend, husband, and father that I always strive to be. And even though there has been a profound change in my life, my life itself has not changed, so please don’t send me bed pans, subscriptions to Lymphoman Monthly, and copies of “How I Survived Lymphoma in Ten Easy Steps”. But this doesn’t mean that you should feel like you can’t talk to me about what is going on. I am always happy talk about this, so call whenever. Of course you can always come visit me at Penn or at home while I am just chilling out. Finally, I just ask that you all keep on being the wonderful friends and family that you have been both before and during this period in my life. I can ask for nothing better than all of your support.
I will be putting up a website sometime next week called http://www.baldmike.com where you will be able to read my “bald blog”, follow my progress, my rapidly changing hairline, and my fluctuating blood counts.
Thanks so much for all of your support. Call anytime. Come and visit.
In humor, health, and love,