Tuesday, March 25, 2014

My Oncologist’s Puppy Dog

Last week I received infusion number 13 of intrathecal methotrexate, administered over a period of two years. A local cancer clinic provides this service in partnership with my neurologist. As such, I’ve come to know my oncologist fairly well, and I’ve grown fond of him. I think the feeling is mutual.
Nine weeks ago, when I received infusion number 12, I informed him that the treatment was no longer working like it did during the first year. As a result, my neurologist and I decided I would get only three more treatments before giving up, unless it unexpectedly starts working again. My oncologist appeared to take this in stride, as I expected.
Keep in mind that every oncologist, especially one nearing the end of an accomplished career in medicine, has witnessed untold human misery. When you sign up to be a cancer doctor, you know that all of your cases are going to be of the life and death variety. As a matter of personal survival, you must develop the means to temper your natural grief response. Of course, oncology isn’t only about misery, it’s also about sometimes guiding your patients back to health, rescuing husbands for their wives and children for their parents.
When my oncologist greeted me last week, as usual, he asked how I was doing. I rather bluntly confirmed that the treatment was still no longer working, and that I would probably be back for only one more session. I continued to give him more specifics, in a clinical and dispassionate manner. “My legs are shot, and my hands are headed in the same direction” – that sort of thing.
I was taken aback by his reaction. His eyes betrayed the heartache that he felt. I hadn’t meant to elicit an emotional response. I guess I assumed that if there was anyone with whom I could speak so candidly, it would be my oncologist.
Am I to take from this interaction that, at least in his view, my condition is worse than that of a dying cancer patient? No, I don’t believe so. I think about it this way: when the evening news is blaring on my television set, and I am only half listening, if a story comes on about the death of a person in a tornado, I am desensitized enough to feel little or no sadness. But if there is a report of a puppy dog harmed in the same storm – an innocent, helpless creature – I stop what I’m doing, look up at the television screen, and experience a more tangible sadness. “Even the puppies?” I may lament. “Even the puppies?”
As I explained above, my oncologist is understandably conditioned to the suffering of cancer patients. But when his one and only MS patient is doing poorly, it’s more unbearable than it might otherwise be.
“Even the MS patient?” He must wonder. “Even the MS patient?”

Tuesday, March 18, 2014

I Keep Falling

Front view of a Hoyer lift, used for lifting p...
Hoyer lift, used for lifting patients into/out of bed. (Photo credit: Wikipedia)
“Sometimes I wish for falling
Wish for the release
Wish for falling through the air
To give me some relief
Because falling's not the problem
When I'm falling I'm in peace
It's only when I hit the ground
It causes all the grief”

― Florence Welch
The type of wheelchair transfers I do are called “stand – pivot.” The reason that I can stand at all is because of the spasticity in my legs and Kim’s firm grip on the back of my pants, not because of actual standing ability. During this type of transfer there is a critical maneuver where I rotate 180° and land at my destination. It works pretty well, almost all the time.
But last Friday morning my legs lost their spasticity halfway through the pivot, and I started crumpling to the floor in slow motion. My legs were stuck in an awkward and painful position under my full body weight. “Pull me forward. Pull me forward!” I implored Kim. She was able to do that and I had a semi-smooth landing, face down on the carpeted floor.
Kim rolled me over and placed pillows under my head and under my knees. I was comfortable. We did the usual roll call of body parts and found that, once again, I had fallen without significant injury. She then went out into the garage to gather up the various pieces of our portable Hoyer lift. This would be the second time we had used this lift in the last year to raise me off the floor.
Did I mention that my daughter and her longtime boyfriend have moved into our house? There’s probably enough interesting material on this subject for a future blog post. Anyway, Nick heard Kim making noise while gathering up the Hoyer lift components, so he emerged from their luxury accommodations at the back of the house (which I fear are so cushy that they will never leave) so that he could help get me off the floor. The Hoyer lift is barely adequate for transferring a disabled person from a wheelchair to a bed, or vice versa. But this lift is not set up well for picking a large person off the floor. Therefore, Nick had to support my head and back while Kim operated the lift. Before long I was back in my wheelchair, only slightly battered and bruised from the ordeal.
Each of my transfers is now a near fall, except for the ones that are actual falls. I know that you are tired of reading about this sort of thing, and I am tired of writing about it, not to mention living through it. I realize that there are several choices for safer transfers. Instead of the stand – pivot, we can do the squat – pivot. Kim has been trained on this procedure. We can also use a slide board. I ordered one and it arrived last week. But these are merely incremental improvements. I’m inclined to make a dramatic improvement. What if there was a system that provided much safer transfers and actually allowed me to accomplish these transfers independently? How cool would that be? Well, there is such a system, and I’m trying to get my hands on one.
Stay tuned to this channel for further updates….
Here’s one parting quote on the subject of falling, by a man who ought to know.
“The greatest glory in living lies not in never falling, but in rising every time we fall.”  ― Nelson Mandela
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Tuesday, March 11, 2014

An Argument from Love

“If you refuse to do it yourself, I’ll do it for you,” I threatened.
“Oh no you won’t!” Kim replied.
What had begun as a legitimate debate soon deteriorated into a test of wills.
Last week Kim received a letter from our primary care physician indicating that she was due for her annual physical. I informed Kim of the correspondence, and she was rather dismissive. “Yeah, whatever. I’ll make an appointment when they refuse to fill my prescriptions.” Yes, our doctor has been known to hold our prescriptions hostage if we don’t come in for a physical.
Kim’s attitude toward these annual checkups is not an uncommon one. Like so many people, she has no pressing health problems (that we know of) and is a very busy person. My understanding is that annual checkups are not as much fun for women as for men. I’ve seen the stirrups. Nevertheless, I just couldn’t let it go.
I argued that physical examinations are even more important as we grow older (perhaps an ill-advised tactic). I brought the letter over to her, and while channeling my inner male chauvinist (another ill-advised tactic) I demanded, “Call the doctor’s office right now and make an appointment.” I sat there, alternately staring down at the letter and up at her eyes, so as to indicate my resolve.
Unafraid, undaunted, and unimpressed, Kim pushed the letter back toward me and said, “No. I’ll do it when I feel like it.”
I slid the note back toward her and made that threat, “If you refuse to do it yourself, I’ll do it for you.”
“Oh no you won’t!”
“Try me.”
“It doesn’t matter, because the doctor’s office will never let you.”
“I guess we’ll find out, won’t we?”
I did it. I contacted the doctor’s office and they allowed me to make an appointment for Kim, no questions asked. I felt like the secretary to an important person.
My important person became steaming mad. “What you just did is not okay.”
Kim determined that my punishment was approximately one hour of the silent treatment. The tension in the room was palpable, but eventually it dissipated. Since that time we have made our respective cases to several impartial people, but few are foolish enough to choose a side. We each stand by our original positions.
As I began writing this account of the confrontation, I had to ask myself why I felt so strongly that Kim should make an appointment sooner rather than later. As I said, I didn’t suspect that she had any particular, underlying medical problem. That wasn’t it. Of course I have immense love and compassion for my wife. That was obviously a major factor. Given my own medical situation, I’m more aware of the effect that health problems can have on a person’s life, and the importance of frequent and open communication with your medical team. I go to these appointments with a long list of issues, many of which are addressed at least to some extent during the checkup. These experiences definitely influenced my desire to have Kim hurry up and schedule her annual physical.
But if Kim wasn’t both my wife and my caregiver, and I didn’t depend on her so completely for my personal well-being, would I have been so insistent? In the heat of the argument I truly felt that I occupied the moral and altruistic high ground. But was I also motivated by self-preservation, at least a little?
Like so many arguments, this one was a mosaic of legitimate concerns and questionable tactics. There were plain statements and hidden agendas, genuine concerns and shameless posturing. Even though intentions were good, communications were flawed. In the end, however, this was above all an argument from love, and that’s the most important thing.
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Tuesday, March 4, 2014

Potpourri

It’s becoming more and more difficult for me to don my winter coat, even with assistance, especially the part where I try to stuff my arms into the sleeves. So I bit the bullet and ordered this ridiculously expensive winter Cape, which has no sleeves. Once I try it out, I’ll give you a review (picture on right). Who else wears a cape: Batman, Superman, the magician at your child's birthday party.

Marie Suszynski at Everyday Health published a column called Nine MS Myths, Busted. Myth 2, “Everyone with MS Ends up Severely Disabled”, and myth 9, “Everyone with MS Will Quickly and Steadily Get Worse,” are sadly ironic for me. But the rest of the items are pretty sound. Thanks to Stu's Views & M.S. News for this link.

Apple’s iPhone has an abundance of accessibility features. Click here for a summary.  I also came across this article in USA Today a couple of days ago: Five Things You Had No Idea Your IPhone Could Do. I'm going to try #1, and I've already started using #3. (sorry Al)

Maintenance and parts support for the iBot will expire on March 31. I know people are still working on saving the iBot, and I have my fingers crossed. I wasn’t aware that Dean Kamen brought the iBot on the Colbert Report way back in 2006. Watch this clip – very entertaining. Thanks to Cynthia and Charles Riordan for the link.

Here’s a TED talk that everyone with a brain disease, like MS, or anyone who knows someone with a brain disease should watch. Siddharthan Chandran: Can the Damaged Brain Repair Itself? I have little doubt that medical researchers will find a way to repair the damage done by neurological diseases, but will it be soon enough for people like me?


Finally, I wanted to let you know that I have been asked to write another “Men with MS” column in the magazine MS Focus. It will be in the spring issue, and I’ll let you know when it comes out.
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