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."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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. 

Coughing up a Lung?

I've been sick since Christmas time, presumably a cold or flu. It has hung on and hung on. Mostly it is the coughing that never lets up. This is the kind of coughing that is dry, doesn't produce the relief of mucus. It is the type of cough that squeezes the bronchi and it takes a great deal of concentration to not give into that squeezing.

Moving about or talking increases the frequency and intensity of the coughing.

I used every possible over the counter and complementary method I could think of to help get some control of the coughing and give my body some rest. Attempts were futile.

The cough was so intense my head throbbed and my rib cage objected to the constant wracking (hacking?). I could even feel sharp pain in my lower spine when my cough was repeating itself without respite. Yes, yes.. this is what coughing up a lung feels like!

Since I am mildly asthmatic, I am aware of when my breathing is compromised and it certainly was getting that way. Therefore I went to Urgent Care and received a nebulizer treatment. I have my own nebulizer at home but was out of the medicine to put in it. Also, I received a prescription for the medicine (albuterol) and another for Prednisone pills. They helped considerably. But, now the prednisone has run out and the coughing has returned full force.

Two days later I saw my oncologist who ordered a chest xray, just in case there was something going on. I went to have my xray. The technician seemed a bit sullen but I figured perhaps she had a bad day. When I asked to look at my xrays, she let me look at them. This seems to be pretty common these days, at least here in California. In years past I have often been refused that option or told I wouldn't know what I would see, or I was not qualified to look at my own xrays.

I'm not a radiologist. Though I took medical courses in the past with the goal of radiology I never finished my education. I cannot officially read an xray, but I have seen enough of my own that I can at least recognize when something appears to be different from the others that have previously been taken.

I was not surprised to notice a nodule in the lower lobe of my right lung. It has been there quite some time. (long story about that. I'll write about it some other time)

Therefore I was very annoyed to read the final report as read by the radiologist not noting a nodule in my lung, but identifying it as a "nipple".

For Better and Worse

I am feeling better! I got my Guardian Angel to come take care of me that night I was so sick. He drove 57 miles to get here after working a full day. He took care of my every need, by reading the notes I wrote. If I spoke I would cough incessantly! He changed the bed, cleaned the bathroom, held the trash can as I got sick. Oh, I felt so much better after that episode! While I finally lay there in comfort, he did the laundry until 2 am. Then got up at 6 to go back to work again. I couldn't ask for more!

The next day, still sick, but not as bad. Emailed my doctor. His nurse, the one I like, called me to ask questions and let me know doctor had ordered cough medicine with codeine in it to help quell the cough. A neighbor who had seen my posting on facebook volunteered to pick up my prescription. Bless her!

The next day after that I was well enough to have my housekeeper take me to the store to pick up a last minute Christmas gift. I didn't cough once the hour and a half we were gone!. Oddly, by evening the coughing was back again. But, the nausea has not returned.

The coughing does a number on my neck, upper spine and rib cage though. I even heard my neck crack with coughing. Every muscle is sore. I'm using my super duper official medically therapeutic heating pad to help with all that. I don't know what I would do without it. Originally it was ordered for me years ago for arthritis bone pain. I is so large I goes from my shoulders all the way down my back to buttocks. I learned about it from my physical therapist who used it in her practice. Because of the special cover, it produces moist heat. There is a safety feature, too. You have to hold the switch into the on position yourself. That way you can't fall asleep with it on, and burn your skin or over cook your joints.

It heats up real fast and quite high, so, believe me, you don't need to hold onto the switch for very long at all. The heat takes a while to dissipate too. I love it! The only drawback is the price. I don't know if you can get it ordered by your doctor as a prescription, and insurance pay for it. Though, I didn't mind paying for it myself. It has outlasted any small size common plastic heating pad I have ever had by years! Here's the link, if you want to take a look at the site where you can order it. Then click on "Moist Heat Therapy" I like mine the best though. It's model #055, size 14" by 27".

I hope I'm not sounding too whiney and hypochondriacal. But, this is, after all, my journey, the good, bad and ugly. Having the Leukemia may seem to be what it's all about, but it is more than that. The Leukemia and the Chemo will not affect every aspect of my health. And because I already had several underlying conditions before diagnosis, then they are affected at well. I still have so much to learn in how to get things managed and back into balance.

So, the title of this posting is for Better and Worse. I've written about the better. Now for the worse. Or what I think may be the worse.

In January of 2009 I started taking a prescription drug for one of my autoimmune conditions. It is called Cellcept. It is usually what transplant patients take in order to keep their bodies from rejecting their donated kidneys, livers, lungs or whatever. When I first looked at the possible adverse affects of Cellcept I didn't think they were too bad, and was willing to take it even though one of the remote possibilities was Lymphoma. I was desperate and so tired of the battle with my autoimmune disease which had me in it's grip for five years before. I took the Cellcept for 22 months before I needed to stop taking it. Cellcept lowers the immune system and therefore you are more susceptible to infection. I came down with a bad cold and bronchitis at the time. The doctor told me to stop taking it otherwise I would end up with Pneumonia.

So ten months after stopping the Cellcept is when I was diagnosed with the Leukemia. Is there a connection? I don't know for sure. Lymphoma was an expected possibility.

It had not occurred to me until today that maybe there is a connection between Cellcept and Leukemia. To be fair. I don't know that for sure. I hope the company will call me back so we can discuss it.

So let's get back to something better now. How about this picture? Not taken by me, by the way. But, I thought it's nice for this time of year. I've got it on my computer as a desktop background.