Catching a Cold from Cats and Cataract Surgery

I am told my Leukemia is technically in remission as long as I keep taking the Dasatinib.

I have issues with the chemo in that it keeps me nauseated much of the time. That can be quite debilitating and annoying.  It is hard to get adequate balanced nutrition when all I can eat is crackers. Though at least I do have some good days.

This is Ozzie who lives in Lee Vining, California
I met him the week I was diagnosed with CML in 2011.

Recently I have caught a cold from my five cats. Yes, according to the Vet it is not only quite possible but now proven. We can also give our cats the flu, too! The cats are all well now, but I keep dragging on with exhaustion and needing frequent time out's from daily activities to lie down. I don't know if it is residual from the cold alone though.

I also have a mild form of anemia, low lymphocytes (white blood cells) and not enough protein in my blood, as well as a chronic pancreatitis flare up, all of which could be related to my extreme fatigue. Urgh!!!

On Wednesday, I'm scheduled for a cataract removal surgery and lens implant. The lens will be for distance in one eye. Later, the other lens will be for close up. I'm very apprehensive about the idea of someone messing with my eye! Thank heavens I will be sedated for this procedure.

Though I am told there is no contraindication to having the surgery while I have leukemia, (and getting over a cold) it still concerns me. But, I will chalk that up to being overly cautious and maybe a tiny bit of fear.

My boy friend will be taking me for the surgery, bringing me back and staying with me a couple days. A friend will come on Friday. Then my son will be here for Mother's day. So I won't be alone in my healing process. And.... so that I wont bend over or pick up items weighing more than ten pounds.

Four out of my five cats are at least that weight so it will be a good idea that others will be here to "hoist" them about for me and do the bending over to feed them!

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

Trying to Stay Positive with Pills

For the most part, I think of myself as handling the fact that I have leukemia just fine. I don't give it much thought. It's not always on my mind. But, today is a different story.

I have "forgotten" to take my pills regularly lately. I know part of it is stress. When I get stressed I can't think straight. First, I am focused on the problem at hand and I forget to eat, therefore I forget to take my seizure medicine. Then I end up with a seizure or two.

Don't worry, I don't have the kind where you fall crashing to the floor. But, just spacing out can knock down my ability to follow through on things. So, once I have the seizure, I forget that there is anything important to do. (like take my meds!) It's actually nice in a way. I just feel so pleasantly spaced out and unaware... kind of dreamy... sort of like a short trip to LaLaLand. Even after the "trip" is over, it's not over, because I don't just return to whatever it was I was doing with the same intent of purpose as before. Oh, I'm not mindless. I just don't care. If someone reminds me, "did you eat? did you take pills?" I'm on track.

To complicate matters is the ongoing nausea from the chemo pill... Dasatinib/Sprycel. So, if I am feeling nauseated, I don't eat. If I don't eat, I don't want to take pills, any pills, on an empty stomach. Because of the chemo pill, I can't take the typical tummy relief pills other people take. So, basically I just have to live with it and do what millions of people have done forever. Live with it the best I can. It's obvious to me that this is part of the problem of why I "forget" to take my pills.

Seems to me there is a subconscious aversion to taking the chemo pill, because the resulting nausea is unpleasant. But, here I am without adequate intake of my seizure med, which triggers more issues. Part of the problem has been recently resolved, though. I now have a prescription for a dissolvable version of my seizure med.

But, here I sit today, feeling sorry for myself. I know I MUST take the seizure medicine. It's in my hand but just the idea of putting that sweet thing on my tongue to suck on it until it is absorbed makes me want to hurl. Hmm... I wonder if there's a suppository.

Needless to say, it's hard to stay positive today.

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!