Doing Better, More Hopeful

I'm doing better. I've gotten more accepting of the side effects of the chemo. I have no choice about it. I have to take it the rest of my life. The pill was once trialed on chondrosarcoma, didn't work. But, is working for my Leukemia. My blood work is very close to normal. I don't know what's happening with my bone marrow, though. Will not have a new bone marrow biopsy for a while. As long as my blood stays how it is, no real pressing need to do it.

The side effects are more headaches, skin rashes, nausea, pounding pulse in my head and neck. The rashes bother my the most. Some of the treatment for it, (would you believe?) is moisturizing cream. The instant I'm out of the shower, I've got to slather it on head to toe. It's keeping the bumpiness down to a tolerable level. The more bumpy it is the more it itches. The sun seems to make it more itchy, too. And night time makes it worse, too. When really unbearable I take Benedryl. Gives me a good night's sleep, too!

Headaches... Tylenol. Pounding pulse, I can do nothing about, just get active and I don't notice. Lying down seems to increase it, or maybe I'm just noticing it more.

Nausea has changed my diet considerably. As long as I eat bland food, no seasoning, I can sort of keep it under control. Taste is off, sometimes I will think of a delicious food I can eat, then try to eat it and it will taste like cardboard. No sense in eating it! I don't go out to restaurants anymore, waste of money! My boyfriend is a gourmet chef. Spoils things considerably for him. Oh well. It is what it is.

Now... the big advantage to the nausea is that I have lost more than twenty pounds since November. And I certainly needed to lose weight. I am eating more healthy foods, more salads, cooked veggies and fruits, less meat. I ate these before but too much junk food interspersed. But, once my stomach rejects a food I have an aversion to it, and no longer crave it. Interestingly, with the lost weight, my GERD and hiatal hernia are not bothering me so much, and the nausea is not so bad anymore.

Another big advantage to the chemo: For the last two and a half years I was having SEVERE bone pain. I thought it was a normal process of aging related to my weakened pelvis and spine issues. I thought I would have to live with it the rest of my life. Now I know that the increase in pain during that time was caused by my bone marrow going through the changes of the Leukemia developing. Did you know that your DNA gets morphed, and is no longer the DNA you were born with? Since all that has improved due to the chemo, my pain levels have decreased considerably. I still have arthritis pain and osteoporosis pain, but it's nothing to what I had been going through that had needed Dilaudid to be controlled.

The other thing is the fatigue I was experiencing all that time has improved. I have more energy. I was dragging myself through the days, even too tired to write in group. And now that I think about it, I should be updating the group with the very same info I have just shared with you!

Primary Response and GI

This was the response I received from my Primary Care Doc:

"You need to work closely with GI regarding these issues.

We can also send you to the nutritionist to help sort out the diet. Push fiber to help the questran go through - metamucil or citrucil.

If this isn't doing the trick, schedule an appointment in the office to see how we can help resolve some of these symptoms.

Sorry you're having such a hard time."

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So, then I sent email to my GI Doc: 

Dear Dr ...

If I am going to remain on the chemo and continue to have uncontrolled GERD, I would like to have more effective treatment options that what I have right now.

Simple methods of controlling food intake is not possible. I can barely eat anything without having reaction. I've been coughing for weeks. Had a cold or flu since the week before Christmas. Or was it all simply gastrointestinal? Diarrhea, vomiting, coughing. Not well controlled by typical medications for same, except imodium. After new years things seemed a bit better. However the coughing continued. I have a history of asthma. I know what to do for it. It's not asthma. I have allergies. It's not allergies. Maybe a combination. But definitely as soon as I eat something I am coughing. Up until last week, a dry hacking incessant coughing throughout the day. Speaking brought it on. Bending over brought it on. Finally I realized it must be the GERD. I stopped eating except for the barest minimum I could tolerate. Things have improved. But I doubt this is healthy.

In the meantime, I have lipids that have gone sky high, and now needing to take Questran, which doesn't sit on my stomach well, either. 

Quality of life means something to me. I have spent years dealing with so many health problems I found that having some control made life easier. If I have to stay on chemo pill for the rest of my life and not have well controlled other health issues it is not worth it.

I am at the point where I cannot find sufficient answers on my own. 

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This was his response:

I just got your email.

Please schedule an office visit with me and bring in the copies of all your prior gastroenterologic procedures with pathology. 

I can then help you to manage these issues.

Take Care

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This was my response:

I have appointment now scheduled with you on March 5.

Are you wanting my endoscopy report that showed nothing from 2010 and 2011 from UCSF? 

A history of my visits to Gastro at UCSF for 2010 and 2011?

From 1997 or whenever it was at UCSF for the basket procedure and cutting of the something of Vater?

Or are you wanting my gastro history from the 1980's where they did the busting of the gallstones with the machine and the ensuing pancreatitis?

Records from Dr. C.... are not available for the years when I had the chronic pancreatis. At least as far as I know. 

Tummy Turmoil

Letter to My Primary Care Physician

I don't even know how to eat a healthy diet anymore. It was a struggle before being on chemo, as I have the oral lichen planus which only permitted bland foods and little chewing. I've had that almost permanently for seven years.

I was also on a fairly bland diet because of GERD. But, now since I cannot take H2 blockers or proton pump inhibitors, controlling the GERD is not happening, even though I've got the misoprostol which helps a bit, and that other one I can only take on an empty stomach. (Sucralfate?). The only time of day I have an empty stomach is when I first wake up. After I eat something, my stomach is never empty for the rest of the day. My food just sits there, burping and nauseating throughout the day. I dread eating anything most of the time. And now of course, we realize all that coughing has been caused by the GERD (Though it started with that cold or flu I had before christmas).

So, as each day goes by, I test whether or not I have appetite. If I don't and I eat, I just feel worse. So, I might nibble on whatever feels safe to eat. Sometimes I can eat soup, cereal or even part of a frozen dinner. I hate it that lettuce makes me sick now. I miss my salads!

If I have to stay on this chemo the rest of my life and just tolerate the inadequate control of my tummy problems (also have hiatal hernia), I know I cannot maintain a "healthy diet" that will change my cholesterol issues. I find this whole thing extremely frustrating and discouraging. Even the Questran sits in my stomach like a rock and queasiness is my companion. I've had to carefully balance my health for years. This is out of control. I'm at a loss for what I can do.

Doesn't seem worth it to be on the chemo!