Two Interviews

Since Marty saw Dr. B, our Osteopathic and TCM (traditional Chinese medicine) physician last week, he has been feeling a notch better, looking a bit more bright eyed and with better color, and seemed to have somewhat improved energy and appetite. Every improvement, even seemingly minor is welcomed enthusiastically! A trend for improvement is what we cautiously hope for in coming months.

Today, Marty and I went for two interviews in the interest of improving his health by whatever means possible. First, we saw the medical marijuana intake person. Primarily, this was to get Marty's ID card for medical marijuana, and to learn more about how the system works. We were advised to try a tincture form rather than smoking or eating, as this would be easier to dose accurately. Eating baked cannabis goods is not ideal for Marty as he does not absorb nutrients at all fully. We were given directions to the dispensary, which sounds like an old fashioned speakeasy, in that we ring the bell of an unmarked doorway, show our card to the camera, and then get buzzed in. Very noir! Trench coats and fedoras may come in handy.

Next, we met with the dietician at Group Health. It seemed like she was a bit overwhelmed with how much information we already had on hand. In addition, Marty is far from her typical patient, even for someone who has had cancer. He is not currently having chemo or radiation, he does not have cancer, and he is, of course, unlike most Americans, not overweight, diabetic or generally unhealthy other than being malnourished. She seemed impressed by how many nutritional directions we have already explored, and saddened by how depleted Marty is despite all our investigations. We did not fit her patient profile and she couldn't offer much help.

She came up with several ideas to explore: 1) keeping track of what sort of carbohydrates Marty is ingesting in case that spectrum is encouraging bacterial over-growth, and thus inflammation and 2) investigate diets that are recommended for IBS. Although we have done this in the past, we are willing to revisit the IBS diet scenario again. As previously stated, by any means possible. We carry on with vaguely new information.

Thanks to Delia for cookie deliveries for Marty, Lindsey for keeping me happily fed and wonderfully strong, Linda for supplying salt from Kauai, and students, friends and family for kindness, humor, consideration and concern. We appreciate you!

Osteopathic input

Today, Marty saw my Osteopathic Physician and TCM doctor here in Seattle. Dr. B had been tremendous help for me in recovering from my fractured patella, and although he does not accept new patients, he had kindly offered to see Marty.

Dr. B believes he can help Marty with underlying causes of his discomfort, and over time, improve his health to some extent. He was reassuring and encouraging, without being unrealistic. Marty looked much more bright eyed after his time with Dan, and seemed far more at ease.
Of course, any improvement from Marty's terrible distress of yesterday is welcome!

Both of us are cautiously hopeful, relieved that Marty is more comfortable today, and much in need of sleep.

Delayed Appointments

Marty and I had appointments scheduled for today for interviews with the medical marijuana pharmacy and Group Health post-cancer care dietician. Unfortunately, Marty awoke with severe intestinal cramps and overwhelming nausea and is unable to leave our apartment. Both appointments were re-scheduled until a week from today.

When cramping and nausea set in, all Marty can do is stay in bed. A hot water bottle eases the cramping to some degree. Only vomiting relieves the nausea, and cannot be forced.

He is very depleted and weak, pale and thin and exhausted. Sleep is typically restorative for him, so hopefully the discomforts will quiet enough to allow him some rest.

Historical context

For those who are reading this blog for the first time, I am clarifying Marty's medical history so you have a context for his current condition.

In February 2004, Marty had surgery to remove a large pelvic sarcoma from his lower abdomen. The surgery was long and complicated, and performed by 3 excellent surgeons. The tumor was removed intact with clean edges and minimal damage to his organs. After days in the ICU and several weeks in the hospital, Marty was sent home to regain strength before beginning radiation treatment.

In late March 2004, Marty began 6 weeks of daily radiation to make certain all cancer cells were obliterated. When he was released from Radiation Oncology, the chances of the cancer returning were termed "statistically insignificant". Tests, scans and exams have supported that prediction, thankfully. Other than his digestive issues and weight loss, he is in surprisingly good health.

Initially, Marty recovered strength and energy reasonably well. However, about a year and a half after radiation, he began to experience occasional bouts of severe digestive discomfort. Intestinal cramps and vomiting were the most distressing of the symptoms. Thinking this was a dietary issue, we made many changes to his food intake. No dietary change seemed to improve the symptoms. As months and years progressed, his discomfort increased in regularity from every now and then to nearly every day. The past two years have been particularly challenging for him. He has lost alarming amounts of weight, inches in height, much of his muscle mass, as well as his stamina and energy. Life has become quite unpredictable for us, as we never know how well or ill he will feel on any given day. Incredibly, he continues to work, although there are many days when he goes to work late or comes home early. We are beginning the daunting task of applying for disability so that we are prepared should he be unable to work.

Marty's spirits have been remarkably resilient for most of this arduous journey. Lately, however, his optimism wears thin, understandably. He remains the World's Sweetest Man, in my opinion, but sustaining good cheer in the face of frequent nausea and painful intestinal cramping has worn him down.

We continue to enjoy the details of our life together. Our cat Carmella, who came into our family just previous to radiation treatment, is a great source of daily joy and nightly company. In the warmer seasons, we garden at our community P-Patch, growing vegetables that he can eat with some degree of ease. Our local nieces and nephews provide continuing delight. We laugh when we are so inspired, and take each day as a gift.

Yes, of course, this has been very hard for me. The experience has, however, given me confidence not only in my own strength and resilience, but in the wonderful support from friends and family that has been so generously and lovingly provided. I am conscious of my limits, and will request assistance when needed.

I do emphasize that the issue is NOT a recurrence of cancer, but the cumulative effects of treatment for cancer.

I will be posting on this blog to inform everyone as to any significant news. Although we love hearing from friends, please understand that I haven't the time, energy or attention span to attend to emails or calls with any frequency. Any comments left on the blog will be seen by both of us.

And so, good wishes for health and ease to all who are reading this blog!

Some good days, some not so good days

Marty and I welcome the days and nights when he is not in terrible discomfort. These are called "good"days, relative to the other sort, which are rather torturous for him.

He had several "good" days this week. We did our errands with ease, saw local family members happily, and even went to the movies together. Marty's energy is nothing like it used to be, even on a "good" day, but we make the most of his respective ease when we can, and do our best to enjoy a normal life, even though nothing about the life we are living is really normal. Sleep is currently our favorite sport. There is never enough, but we pursue it with dedication.

Now, his days are not so good. Intestinal cramping has returned, and given recent history, nausea and vomiting will follow soon. Sleep becomes a necessity that we can barely accomplish.

We deeply hope that our meeting with a nutrition expert next week will provide some guidance for comfort, as well as for potential weight gain for Marty. The cramping and nausea deplete him further as eating becomes ever more challenging for him. The lack of nutrition only increases his discomfort, as his tissues become less and less resilient without food.

My thanks to kind friends who have provided contact information for nutrition experts, Qigong instructors and general support. Your efforts are deeply appreciated!

Thanks to all!

My thanks to all of Marty's people who have responded to my email with helpful ideas and support for Marty and I! We are so very lucky to have loving friends and family.

I am also grateful that the emails have not required a response. As stated in my email, I have plenty of tasks daily besides attending to email.

Marty has enjoyed several "good" days, which are a great gift. We will see a nutritionist at Group Health next week in hopes of some constructive guidance so that Marty can gain a bit of weight and be more comfortable. It is of course ironic that someone who formerly enjoyed eating as much as Marty did now has such a challenge in eating. Also ironic, of course, that someone like me who loves moving endured two years of recovery from a broken knee, but this isn't about me. Ironies abound in life. Our only choice is in response.

We also have an interview set up (can't wait to hear the questions!) to be able to obtain medical marijuana for Marty. Break out the lava lamps and the Pink Floyd albums!

I will post whenever there is news to report.

With gratitude,

Jeanne