There has been A LOT going on. Several things were happening at the start of this year:
1) I had begun losing some weight again. For the past several years, my weight had been pretty stable around 184 pounds or such which was about 40 pounds lower than my heaviest (pre-cancer), but in a short time, I lost another 10 pounds.
2) I had become (and still am) increasingly tired, impacting both my ability to think clearly, especially late afternoon to early evening (I feel a bit better after dinner and then calming down and relaxing).
3) My platelet count which has been pretty stable for multiple years, ranging around 60-65 or so suddenly dropped to around 40-45; also, my M-spike which you all know by now is the main indicator of my cancer progress jumped from its value of around 1.0 (back and forth from 0.9 to 1.1) to 1.4. Together with the platelets, that worried me that it was starting to accelerate.
I had a (regular) chat with my medical folks. They said it was time for my annual CT scan to look for tumors or signs or things getting worse. There was some good news -- they found no active tumors, although the cancer is still active in my bone marrow. A recent review showed that the myeloma was stable -- not accelerating. So....phew! But what was making everything else worse?
From the CT scan, they told me that my spleen was also enlarged. I had heard that before, but it never seemed to concern the medical team that much. However, this time it was larger than before, enough to represent a potential danger to my life. They told me I needed to see the Gastroenterologist. He wanted to run a lot of procedures and tests, which, as a gastro guy, involved sticking cameras in various places. So after months of this, I have learned some things, and we have reached a few conclusions........(I'm building suspense here.......)
- The spleen is sort of a "bank" of blood cells, especially platelets. If the liver gets damaged, these cells tend to collect in the spleen as a way to reduce pressure on the liver -- this lowers the platelets in the blood stream, making me more likely to bleed quickly (even more than before). This enlargement of the spleen also increases risk because if it is damaged, there will likely be internal bleeding that may be difficult to stop.
- The enlarged spleen also signals significant problems with the liver. The doctor believes that the overall tests strongly indicate cirrhosis or scarring of the liver. I have an appointment with him next week to clarify all of this data and conclusions. After my last procedure, Patty asked the doctor if he thought what I was facing was potentially life threatening. He nodded his head "yes" - vigorously!
- The way the doctor described it to me, he said that there are two major stages of liver disease: compensated cirrhosis and uncompensated cirrhosis which is worse. He thought I was at "the severe end of compensated cirrhosis", so the goal is to potentially reduce the amount of fat in the liver which should increase the percentage of healthy liver I have and prevent the need for liver transplant (which they might never do for me given that I also have cancer?). However, when Patty and I looked at the symptom list of compensated cirrhosis, I have almost all of them.
Lovely, eh?
So, unless he says something different next week, we are moving on treatment right now to do the following:
- Change my diet; we have already begun this. Reduce carb intake, especially sugar, but also other types of carbs -- so no cookies, spaghetti, cereal, etc. Focus on lean meats (little red meat), lots of vegetables and fruit (not too much fruit - and some fruit is at the high end of carbs, so very limited consumption of grapes and others), whole grains (need to talk to the doctor about whole grain bread, for example), and legumes (also need to talk with him about that). He encouraged the South Beach Diet, Mediterranean diet, more "keto"-ish. This reduction in carbs should increase my body's burning of fat (including fat in the liver). Patty has mostly joined me in this effort, although she just had to resume some carbs for her own energy and health. This is the first time that my diet has been restrictive than hers!
- Lose weight -- this is linked with diet. So far, using my home scale, I have dropped (since we started this year) from about 174 to 158 this week. Yowza. However, some of that is muscle loss, so I need to try and increase exercise and try to rebuild some muscle mass.
- Changes in medication to replace my hypertension med that is harder for the liver to process and replace it with a beta blocker. We'll be making that switch soon. Wish me luck!
On top of all this, this semester I continued as co-chair for our department tenure review committee, and we reviewed NINE portfolios which may be a record at UVU. It was exhausting, but part of my goal has been to train my co-chair and get her ready to take over the committee. I also continued to serve as Assistant Chair, working with the coordinators of all majors in the department to get courses scheduled (around or more than 300 classes per semester). I have also been involved in training a new department scheduler. Then, teaching. My department reduced my teaching load because of these administrative duties, and given my situation, they gave me two wonderful Instructional Assistants -- hooray! They have greatly shouldered the burden for grading and allowed me to focus on student interaction and teaching. You may have already seen this, but this is pointing to........
That is where I'm headed. I have already told my department that I will be taking Family Medical Leave next semester, and in January, we will apply for long-term disability to get me to Social Security age. I had hoped to finish up this academic year and then do this.......but I just can no longer should all those responsibilities, and trying to manage my health takes up significant amounts of my time. The past three semesters have been very difficult for me. However, I have been relieved because each time I spoke of my plans with my three doctors (GP, oncologist, and gastroenterologist) about whether they believed I would meet criteria for disability, they have all said "yes, without question." I do hope to still work on some articles, maybe even another book in my early retirement. I still want to contribute and help teachers improve student learning, but we'll see how much I can get done. I will be free from the stress of teaching loads, grading, and the work of scholarly committees. I'll have time to rest, manage my health and try and be able to spend more time with family and friends.
So, my lovely friends and family, that is the latest! Sorry for making this so long. And thank you all for your love and support.
