Mick McKellar Update — Day +555

Much Ado About Nuttin' Much...

Friends and relatives of late may have noticed empty spaces normally filled to overflowing with Mick McKellar. I am not studying to become a hermit. My last adventure (including jetting to Rochester via LifeFlite) was apparently triggered by a lung infection — something I picked up and introduced to one of my lungs. This, plus a new medication that may reduce my immune system response even further, has amplified my innate and natural shyness (cough, cough), causing me to be very careful about shared air and surfaces. Déjà vu — all over again.

I'm 555 days out from my blood and marrow transplant, the gift of life from my brother, Kevin, and I had hoped for more stability in my condition. My primary disease — Philadelphia chromosome-positive, chronic myelogenous leukemia (CML) — remains in remission, thanks to ongoing medication and the frenetic activities of Kevin's Tennessee T-cells. Their anti-cancer effect is called the Graft versus Leukemia effect (GvL). They remain very active, but are unhappy. They know they are in the right neighborhood, but sense they are living in the wrong house, so they attack other rapid-growing cells.

This ongoing tendency to attack parts of the host body — ME! — is called chronic Graft versus Host Disease (cGvHD). This chronic form of GvHD appears to be the root cause of my ongoing difficulties. Odd that the treatment, apparently NOT a cure this time, is infinitely more painful than the disease. Way back in May 2010, when CML had me at death's door, I was leaning against the door jam, half asleep. I felt exhausted and disconnected from the rest of the world, as though I was slowly fading from life. It was not particularly warm, but it was fuzzy. Oddly, after that experience, dying no longer frightens me, although the thought that I came so close to waiting too long to seek medical help, gives me pause.

On the GvHD Train

Everyone who has a blood and marrow transplant (BMT) has a different experience. Doctors explain and medical staff/brochures/books/articles/DVDs/handouts train, but it remains shooting with a shotgun. After the first 100 days (the Acute period), during which I experienced some rather spectacular GvHD attacks, we hoped for a respite and then only a few, controllable chronic GvHD symptoms. Well, the ride has been a rough one, and we are still on the train — my caregiver and me...

We were ready to get off the GvHD train at the end of 2011, when my old nemesis, the skin rash, reappeared — but with a new wrinkle — appearing on my right foot in a new form, a fibroid form similar to scleroderma. Skin care and high dose steroids (mostly prednisone) since January, have controlled the rash, all but the patch on my foot. However, during this time a numbness and tingling, long a part of my walking experience, has spread up past my ankles to my lower legs and made an appearance in my hands. I believe they call it peripheral neuropathy. It feels like I'm wearing leather stockings that come to mid-calf, even when I am barefoot, yet my hands and feet remain extremely sensitive to hot and cold. Odd that...

Can't Sing About the Train Ride

Sometime between February 2012 (when I had 67% lung capacity) and June 2012, my lung capacity decreased to 27%. Tests during my last visit to Mayo Clinic (part of my recent emergency journey) show 25-27% capacity. The reason for the decrease remains, as yet, elusive. Best theories point at my constant companion — GvHD in the lungs or bronchiolitis obliterans. Treatment usually involves starting prednisone, but wait...I've been back on prednisone since February! They are trying some different medications, an antibiotic that has shown some benefit and just this week a medication called Cellcept. It's much like prednisone. It's used to prevent rejection by those having lung, kidney, or liver transplants. It also suppresses my immune system, but we don't know how far yet, so I am taking additional precautions against infection, etc. We wait and watch for any improvement and, of course, any new side effects. One thing is certain...I won't be singing about it. I cannot sing anymore — sustaining a note causes uncontrollable coughing. Unless I carefully control my breathing, even sustained conversation is difficult, something for which I believe Marian may secretly be just a tiny bit thankful... ;-)

HP = High Pressure

And then, there is the blood pressure problem. During my last adventure in medical emergency treatment, my blood pressure soared and refused to come back down. Now I take three medications instead of one to reign it back, and test my BP each day. I watch my sodium intake and avoid caffeine. Here I sit. De-sugared. De-salted. Decaffeinated. I am developing a close, personal relationship with Mrs. Dash. I religiously read product labels — often blanching at the amount of sodium per serving. Life changes once again.

Still Intrepid

Walking is still my major form of exercise. Upon my return from the latest trip, I began with a walk around the block, arriving home fatigued and out of breath. After several days, I increased to two blocks. A week ago I increased to four blocks square (.5 mi). Yesterday and today, I've expanded to six blocks (.75 mi). Moving slowly and carefully, carrying and sometimes using a cane, and resting to catch my breath at strategic points allowed me to arrive home fatigued, but not sounding like a broken down calliope.

I try to walk early, after first light and during the cool of the morning. However, this does nothing to mitigate exposure to ragweed pollen from plants to which I have allergies (like Goldenrod) that not only are in full bloom, but also grow in profusion along the way. So far, a single loratadine tab each day seems to control the histamine reaction to my daily exposure. The first hard frost will solve that problem.

New Normals

It is not so bad as it sounds. I sleep well at night and can still read (although my right eye cataract has deteriorated my vision). I breathe well enough when not exerting myself — so I don't yet need supplemental oxygen — a development I would love to avoid. I laugh (carefully) and manage to control both pain and nausea without the use of additional medications.

Most importantly: I am alive. I've receive 555 consecutive gifts of brand new days to fill with all the best I can manage. I pray and hope for many more, and in an odd way look forward to meeting and defeating each new challenge. As I continue to change and as each new challenge is presented, I will endeavor to write about it here on my blog.

Thanks to all of you who send good thoughts and prayers on our behalf. God bless and good afternoon.

Mick

Mick McKellar Update -- Day +540

Smug...before dinner...

Back from the Danger Zone again...

Marian and I arrived home safely last evening, thanks to the kind efforts of my older son, Andrew and his wife, Krisanna. They drove to Rochester on Friday (August 10), and expected to leave the next morning to come home. Well, I couldn't allow that...so after our celebratory dinner (at Olive Garden), I became ill and once again experienced respiratory distress — so much so, that I ended up in the emergency room at St. Mary's Hospital after midnight. More tests and another day in the hospital(s) patched me up again, but not until I had delayed everyone an extra day. Therefore, my most recent adventure stretched out from July 30 to August 12.

There and Back Again, A Curmudgeon's Holiday

Sorry Bilbo, I couldn't resist it...

Monday, July 30 started as most days start: surprise and joy at waking up, and then on to the meds. I had a slightly elevated temperature, but nothing to be worried about. Late that evening, as I was preparing for bed, I felt a chill and checked my temperature again...101.7 degrees! The rules say if my temp goes to 101.3 or higher, we simply head for the emergency room. Grabbing my med box, I tottered out to the old Focus and Marian drove me to Portage Health. By the time we arrived, my fever was 102.3 and I was having great difficulty breathing and experiencing increasing pain in my chest. My BP soared. They tested and medicated me, deciding to keep me overnight, so Marian went home to get some sleep.

Things went downhill rapidly. I was having pain in my jaw and left arm. I was floating in and out of consciousness...so they called Marian to come to the hospital immediately. It felt like my lungs were tiny and difficult to operate. However, true to form, after the drama was over — I recovered enough for them to forward me on to Marquette General for diagnosis and further treatment. X-rays and CT scans were revealing nothing.

Destination 2

The ambulance ride was uneventful, even pleasant (despite riding backwards on a gurney) and the fine folks at Marquette General accepted the baton and began searching for my bogeyman. I arrived with a cannula in my nose and festooned with IV's, cardio-sensors, and bandages from all the bloodletting. They began a more detailed search while trying contain the blood pressure monster. However, blood testing, scans, and a nuclear stress test revealed nothing specific. My blood pressure and breathing refused to settle down amicably, so they decided I should be transferred to Rochester Methodist and Mayo Clinic. Marian was staying with her brother in Marquette, and had to drive the old Focus home, to wait by the phone.

The Un-final Destination

Friday finds me strapped on a narrow gurney in an aluminum tube, hurtling to Rochester. I wish I could say I enjoyed the flight, but I was given Lasix just before departure (to help control blood pressure), with the predictable and inconvenient results. I was taken to critical care and moved to the BMT ward a day and a half later — finally able to breathe without supplemental oxygen. Of course, I developed type II diabetes because of the increased Prednisone and other medications, enduring constant glucose testing and Insulin shots. I am still testing my glucose level twice a day and injecting Insulin.

I am taking multiple medications to control my blood pressure and just purchased a home blood pressure monitor, so I can work with the folks at Mayo Clinic to fine tune (and hopefully REDUCE) medication levels.

I was discharged Thursday, August 9, to a motel room near the hospital, awaiting the arrival of my family on Friday evening. It was great to see them, so we decided to celebrate by dining out. Dinner was uneventful, but only a couple of hours later, Andrew was rushing me to the emergency room at St. Mary's hospital in extreme gastrointestinal distress. It quickly degenerated to respiratory distress, resulting in nine hours in the emergency department and transfer back to Rochester Memorial. Released (again) Saturday, and grabbing a few hours rest, I rode home with my family yesterday.

The Situation

Trying to manage all the different (some new) medications, testing, reporting, and monitoring feels like I am juggling cats. When I walk, I am reminded of the old man character Tim Conway portrayed in skits on the Carol Burnett show. My lung capacity is still around 25-27% and seems likely to remain low. Although I qualify, I resist supplemental oxygen. Perhaps the most disappointing result of all the medication changes is another dramatic reduction in my ability to taste food.

On the other hand...

We are home — safe and sound. Everything (including my brain) functions, though most at a reduced rate. And once again, I am certain I was helped back from the proverbial edge by the prayers and good thoughts of our friends and relatives. I thank you all.

Good night, and God bless,

Mick