Showing posts with label Chemo. Show all posts
Showing posts with label Chemo. Show all posts

Saturday

Vanity... Vanity... All is Vanity


Watching Diane Sawyer on the news tonight, it struck me how well she has aged. Granted, she might have had a little "help". But, she still wears her make-up well. It seems to me that older women, no matter how many nips and tucks or surgical interventions they might have, make-up is a tell tale problem. Even millionaires, no matter how well done the make up, still cannot hide the years.

Oh, I know this sounds petty. Yes, it is. I suppose. But the idea of lost beauty and aging has hit me very hard especially this last few years. I never thought it would be possible I would react this way. I had the attitude I would grow old gracefully and accept the changes as they came. But, that's not what has happened. I've learned I am not without vanity.

2003 at age 58
Since the leukemia diagnosis, my appearance has changed drastically. My skin has dried and my face has wrinkled. Shall I blame the leukemia for the changes? Can I say it is the fault of the chemo drug I'm taking? Could it simply be old age suddenly taking over my body?

The chemo drug definitely affected my skin. Within a few days of beginning it, I got a bumpy rash. My skin suddenly felt like sandpaper. With the help of my dermatologist, I've been able to have a little control over it.

Though the bumpiness is tolerable I shall miss it's previous softness. Like a child's comfort blanket, it has disappeared. Not only that, my skin has gotten very dry.... very, very dry. That most certainly has an aging effect.

Because of the chemo, I've lost a considerable amount of weight. That's a good thing, though. I needed it. However, losing weight, especially as fast as I lost it, causes disappointing results in appearance, too. Where the face was once plump and sassy, it is now sallow and saggy. The body has lost a lot of muscle mass, too. 'Nuff said about that!

2012 at age 67
It's been a bit of an identity crisis for me. I was used to being considered young looking, and still pretty into my late 50's. Received compliments and sometimes even a head turned in my direction with a "come hither" look from men younger than I. Admittedly it was flattering. I didn't know how much it fed my ego. Nor, how I would miss it.

Suddenly, I look in the mirror and I don't know that old woman. It's a shock.

I know I will eventually become familiar with my new appearance, if I will just look in the mirror every day and acknowledge that the face I see is mine.

I think about how frivolous this all is! What am I complaining about?

I am so thankful I was not diagnosed with leukemia before these new tyrosine-kinase inhibitor chemo drugs were created. The first one, Gleevec was approved for use in 2001. Before that, the average length of time someone survived with Chronic Myelogenous Leukemia was about six years. The one I'm taking, Dasatinib, is 325-fold more potent for attacking the CML. My survival is pretty much assured. I should live out my life until I die of something else.

Well, it is what it is. An older woman, a senior citizen... me, complaining of lost beauty and confused about identity. Yet, I'm alive and doing better than I was two years ago when I was in so much bone pain and having night sweats with my blood counts sky high and bone marrow not working right. And still, there is a part of me, a part deep inside, the one that knows without a doubt that I'm really twenty-something. At least it always feels that way.

I remember when my mother was in her eighties and in a nursing home. She complained about the old ladies at the lunch table. Astounded, I blurted out, "Mom! YOU are an old lady!"

We laughed.

Now it's my turn.


“When you are five, you know your age down to the month. Even in your twenties, you know how old you are. I'm twenty-three you say, or maybe twenty-seven. But then in your thirties, something strange starts to happen. It is a mere hiccup at first, an instant of hesitation. How old are you? Oh, I'm--you start confidently, but then you stop. You were going to say thirty-three, but you are not. You're thirty-five. And then you're bothered, because you wonder if this is the beginning of the end. It is, of course, but it's decades before you admit it.” 
― Sara Gruen, Water for Elephants

Wednesday

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.

Monday

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. 




Wednesday

I Can Do Anything Better Than You Can!

I'm happy I came across this:

"Dasatinib, administered once daily, as compared with imatinib, administered once daily, induced significantly higher and faster rates of complete cytogenetic response and major molecular response.

Since achieving complete cytogenetic response within 12 months has been associated with better long-term, progression-free survival, dasatinib may improve the long-term outcomes among patients with newly diagnosed chronic-phase CML. (ClinicalTrials.gov number, NCT00481247)"



Why am I happy?

Dasatinib is the chemo drug I am taking for my leukemia. When they mention "complete cytogenetic response and major molecular response" it means that the way out of line bone marrow and blood is getting back to normal. It doesn't mean a cure, but it means it is controlled better. That's the easiest way to explain it at the moment.

The other one mentioned above, Imatinib is an older chemo drug that is sort of the great grandpa of the one I am taking. It used to be the best one around. But according to the above, it looks like my chemo drug is so much better!

Dasatinib is also known as Sprycel.

Imatinib is also known as Gleevec

~~~~~~~~~~~~~~
Note: The art is my own altered photo. It is called Chemo Fire

Monday

Sick Christmas



Christmas was not too good. Pretty sick.

Had to tell Xaver and Amy to not come for dinner.

I didn't want them to catch what I have, if it is the flu.

Don't know for sure. Might be chemo reaction.

Feeling better today

Kats is taking me out to dinner.

Sunday

Today Sucked


Today sucked...
couldn't eat...
tummy awful...
diarrhea...
exhausted...
getting a lot of that from the chemo I guess...

Even though the chemo is just a pill it's doing it's job. I guess.


I occupy myself playing Words With Friends. My son worked on the game producing it to put on facebook. I'm enjoying the game. It's a lot like scrabble. It keeps me distracted from my troubles.

Friday

If it's Normal, Why Continue With Chemo?

Each time I visit my oncologist, I will be asked to have my blood tested. All people with CML have to do this regularly. What caused me to be referred to the oncologist in the first place was my high white cell count.

These blood tests are to monitor the disease and ensure that treatment is working effectively.

Art Glass from Monterey Bay Aquarium
photo taken by Elizabeth Munroz
My blood tests have returned to normal already as I mentioned in yesterday's post. I had a blood test in June which was normal.  It was not indicating the possibility of leukemia. August 24th the same test was done, a CBC, which made the doctor suspicious of Leukemia. In September the test was run again, and still it indicated the same.
That is when I was told I have leukemia. After that, the bone marrow biopsy was done and it verified that I have CML for sure.

Before I started the chemo pill, my blood test was run again. This time the white cells had quickly raised up to 51,000. Alarming to say the least.

I've been taking the chemo pill daily for a few weeks. Now I have what is called hematological response which shows how well the treatment is normalizing my white blood cell count. Complete hematologic response is normal white blood cell and platelet counts, no blasts in the peripheral blood, and less than 5% myelocytes and metamyelocytes in the blood.

It is now my understanding that a cytogenetic response is the next thing to be looked for to verify there is a response inside the bone marrow. But, I wont have that information until  I get my next bone marrow biopsy. I was told that would happen in about six months. Just because the blood looks normal doesn't mean it's normal deeper within.

Saturday

Best Friends Forever

As I mentioned on facebook, my best friend for the rest of my life has arrived. (earlier than expected) But, I'm not taking her on my trip to Yosemite! I'll wait until I get home so we can get acquainted. Her name is Chemo Dasatinib. Also, known as Sprycel.

It wasn't too long after this that I realized, I didn't need any poisonous girlfriend, so I gave her a sex change and a new name. Obi-Wan Kenobi because he's my only hope. And he's wise and will teach me to live and take care of myself.

(Did you know there is a Wookiepedia? Check it out if you are a Star Wars fan. Is there anybody who doesn't like Star Wars. I wonder.)

The doorbell rang. When I got to the door no one was there except a big box, bigger than I expected and surprisingly light weight considering the power the contents will have on my life. But, of course, how much would I have expected 30 pills to weigh?

Arrows pointing upward on all four sides

UP
RUSH!
PERISHABLE
INSULATED
UP

THE MELTING OF THE COLD PACK CAN BE EXPECTED DURING TRANSIT OF YOUR ORDER

PRODUCT CONTAINS NO CHLORO FLUORO CARBONS

ProPak
Corrugated Recycles