What You Don't Know Can Kill You

Since being diagnosed with CML my blood lipids climbed. The reason why? Because I could no longer take any statin medication to keep it healthy.

Statins are contraindicated with Dasatinib (Sprycel) which is the chemo drug I am taking. It is because of the way they are absorbed in the body through the liver. To keep the explanation simple, just imagine a turnstile and two people attempting to go through it at once. Statins are the bully to pushes Dasatinib out of the way to pass through the turnstile. So your body never absorbs the dosage you are supposed to be taking to treat the leukemia.

That becomes a bit of a quandary.

Keeping things in the dark is not healthy!

When I began treatment, all of my standard medications that were also bullys got taken away. Without statins, my lipid counts shot upwards into unsafe levels. Considering that my tummy didn't like the chemo and I immediately lost a lot of weight due to ongoing nausea, one would think my cholesterol would not have climbed. I stuck to a heart healthy diet with lots of fruits and vegetables and no junk food, it didn't help. (I couldn't have eaten junk food even if I wanted to.) Though, admittedly, because of ongoing nausea, some nutrients were not absorbed. Still, I was shocked with what happened to my lipids.

I was very frustrated, unhappy and annoyed. Especially annoyed. With continued high lipids to challenge my heart health, it began to look like I would have more medical problems to deal with! Believe me, I've got enough diagnoses to educate a med school student. Was there nothing more to be done?

I researched information on Dasatinib. I contacted the maker, Bristol-Myers Squibb to see if they could recommend something. No, they said to talk to my doctor. My primary care doctor was adamant that all I could do was to keep to a healthy diet. My oncologist could not give me any suggestions.

Why would a drug manufacturer not have some kind of suggestion? I understand why my primary care doctor could only advocate diet and fiber. Prescribing chemo drugs was not in her realm. And why hadn't my oncologist investigated further to see what else could be done? It all seemed quite irresponsible to me. I wondered how many other patients go through this and feel helpless. How many just go along with the situation and accept things as they are? No, don't tell me. I don't really want to know. I really wish that there could be classes one could take to become a more savvy medical consumer.

I've learned over the decades while dealing with my myriad of medical problems that if I don't keep a watchful eye on things, mistakes can happen. I wanted to solve this dilemma of the lack of a safe drug to take. The more I researched the more I learned. Pravastatin is okay to take for a person who is taking Dasatinib! Pravastatin is NOT A Bully!

I presented my doctors with the evidence and now I have taken Pravastatin for two months. I am so relieved and happy. Look at the results:

Chart

Component	Standard Range	1/16/2012	2/2/2012	7/9/2012	3/1/2013
Total cholesterol		289 H	274 H	249 H	192
Triglyceride		276 H	308 H	221 H	125
HDL cholesterol		47	44	35 L	57
LDL Calculated		187 H	168 H	170 H	110
VLDL (Calculated)	5.0-40.0 mg/dL	55 H	62 H	44 H	25
Cholesterol to HDL Ratio		6.1 H	6.2 H	7.1 H	3.4

Binge, Runaway Niece, Back to School

Some more thoughts on what I wrote yesterday:

I don't think Chloe's going to try out for American Idol. She already auditioned for America's Got Talent a few months back. She "nailed it" as her mom says. But, we shall see, as they are supposed to call back in April.  I just hope her disappointment over dance will be healed enough that she can truly put her energy into music.

Don't think Xavier is on Steve Job's diet. I don't think X eats fruit. I couldn't do without fruit! I did it for years and constantly ate junk food sweets and drank sodas out of desperation for what my body was missing.

My great niece, (my sister's eldest granddaughter), age 17, just "ran away" from home according to her. But, according to Jasmine, she got a lawyer and filed for independent minor status, and moved to Florida (from TX) to live with her girlfriend. She recently came out of the closet, and got rejected by her mom and my sis. I couldn't believe it. But, apparently there were more dynamics than that going on. My sis is drinking According to Jasmine, physical abuse of her mother by the boyfriend is another issue. I feel like I'm stuck in the awkward middle! Jasmine didn't un-friend me like she did her other family. I just worry that she might feel like she can "never go home". I want her to have a home here she can come home to, if necessary. And I hope she understands that.

I don't know what I'm going to do about a new doctor. I have the name of one that the ladies in my crochet group were discussing the other day. Checked her references. She got her medical degree in Mexico. Spent her residency at Mt Sinai Hospital Medical Center in Chicago, though. At the rate I'm going I need to move over to Stanford or San Francisco.

There's some logistics I need to balance in order to get to school and manage being a student in class. Getting there, for example. Do I drive myself and worry about a place to park? Or do I take the "handicap" Metro shuttle and pay six dollars round trip to have them drop me off at the disabled students department when it would take 50 cents worth of gas if I drive myself? Then wait for the student shuttle to haul me across campus? All the while never having the security that I'd be on time. (as I've experienced in the past with those two agencies). It would be stressful and I wouldn't be able to depend on my body to be healthy. What if I suddenly can't walk, or suddenly go into bad pain? I wish I could trust my body!

So, if I drive and find a decent place to park, I better be in good condition to walk to class. Should I take my rolling walker the first class just in case the class is full of students who've beaten me to it? I can't sit on the floor up against the wall the way I used to when a class is full. After the first few classes when the wimps drop out, then I wont have to worry about most of those issues.

Class will be on Monday afternoons. Usually that is my day of rest. After a weekend with Kats, I  need that time to myself before facing the rest of the week. I will have to find a way to rest in the evening, I guess.

Tuesdays the drive to Stanford for binge group and counseling. Usually a Wednesday or Friday for the trip to UCSF. Not every week but at least two or three times a month. Not to mention local doctor appointments.

This month I finally have a dental appointment at UCSF with someone who can actually do some serious work with my teeth now that my mouth is "healed" up, sort of. So it will be interesting to see how I handle that! Right now I have a long term toothache, needs a root canal, I think. I dread if it needs to be pulled, as I won't have a place to hook dentures if that's the case. I will need to put the charges on my credit card. That is a big worry for me. Really big. I can only go so long without paying utilities before they will be shut off. I'm hoping that I can pay about 500 a month based upon the amount of work that has to be done. If I don't spend any money for anything at all except bare necessity. That way it wouldn't be too bad doing without for a while.

Running the CS group, upkeeping my 3+ blogs. My cats haven't written anything for about two weeks now. I think I will have to sacrifice facebook! Yup... there goes my social life! I wish I had some of my old hypomanic energy to sustain me.

I don't worry about writing for the class. I have confidence in my writing. I can do that. It's just having the opportunity to squeeze writing into my life that stresses me. I really want to take the class so I have daily inspiration to be more serious about my writing. I'm actually working on my autobiography/memoirs to be published. I want to be around other writers.

Then the thing that stresses me out the most is leaving my 4 kits at home alone all that time I will be gone. I know they would manage, but cats who are left alone bond to each other and to hell with the person who feeds them. I want to be able to pet them, to hold them, to hear them purring in my ear. I want them to sleep with me and I want them to be happy, healthy kitties. If I was a bit more into magical thinking I would swear that little miss Buffy (da Bampire Flayer) is my sweet old Keli, reincarnated. She even has some of the same markings as Keli did, and she has a lot of the personality traits Keli had when she was little. She "talks". None of my others cats do that.

I've got to call Meals on Wheels tomorrow and get deliveries started. Since I qualify, I might as well save myself from having to buy groceries. They will send a bill at the end of the month but will accept a donation of any amount. It will be interesting to see how their diet might, or might not fit into my new "regime", what ever that might be. I had to stop in the past because the food burned my mouth sores and caused more problems with my tummy. I start the Stanford Binge group next Tuesday at 6pm finish at 8, arrive home at 10 pm. I'm gonna want to EAT when I get home. Better that I have a healthy meal in the freezer when I get there!