Wednesday, February 24, 2016

Still Riding the Silver Hair Train!

It has been nearly a year since I made the decision to throw in the towel, or should I say hair dye? This decision was actually part of the natural progression of how my life has been altered by cancer.

You see, Sprycel, the TKI (oral chemo) that I ingest daily, has a sneaky way of removing not only the disease from my body but the pigment from my skin and hair, as well! Last year, I noticed a strip of completely white hair; on the top of my head. For days, I continued to stare at that strip; it did not go away and it continued to grow. The strip got wider and wider and eventually became a stripe; right down the middle, of the top of my head.

The logical thing to do, would have been to grab a box of hair dye and get busy, but at some point, I decided to take the words of my oncologist seriously; "Michele, you do have cancer, do you really want to keep putting chemicals on your head?" and stop dyeing my hair. I went cold turkey, threw caution to the wind, and decided that there really isn't a vain bone in my body!

In the beginning, my hair looked horrendous and I am sure that many people whispered under their breath; but do you want to hear the most encouraging thing of all? Well, let me tell you, I was amazed and strengthened by all of the supporting comments from my friends and complete strangers. I was approached by so many people, men, and women; they not only encouraged me, but they congratulated me for making such a brave choice.

The women were in awe and told me that I inspired them to jump on the silver hair train and the men told me that they loved my "new" look.  I expected questions from the women, but the positive comments from the men were what shocked me the most; of course, I am at an age where many of those men already have awesome white hair or no hair at all, so I guess I should not be surprised; they said they actually were preferred a natural-looking "woman"! Hahaha

The next surprise came from all the young gals that are actually dyeing their hair to look like mine; they actually ask me "where" I got my hair done. I guess that the "Granny Hair" look is in! It seems that I have chosen the opportune time to take the plunge; and I don't even have to spend hundreds of dollars to get the new look.

So, for all of you that have been wondering just how far along I have come on my journey, here are a few pictures and a few words of wisdom; the most difficult part of this journey was the decision. Once the decision was made, and I was committed, the rest was easy.

I found that the support of doing something out of the ordinary helps to encourage and strengthen you and that the freedom your soul feels from following through on a less than popular choice, is uplifting.
I love the fact that my hair is healthy and I no longer have the burden of dying my hair. I am still in the "can't wait to see what it looks like in the end" stage, but then I must say that accepting this major change in my appearance has been freeing.

I want to thank every single person that has cheered me on; your words were encouraging and heartfelt.

Almost a year ago!

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Monday, February 22, 2016

Lung Nodule Update

Five years ago, when I was diagnosed with chronic mylogenous leukemia, I was concerned about so many things. Mostly these concerns, were about the future.

First and foremost, would I have one!? Second, if I had one, what would it be like? Would the medication that I had to ingest daily, wreak havoc on my body? Would it cause another cancer to develop, or damage my organs and body beyond repair?

I have developed hypothyroidism and high cholesterol, and am currently on a watch and see plan for a spiculated nodule that was found on my right lung.

I had more than 600 ml of fluid drained from my left lung due to pleural effusion, a side effect of Sprycel, (my life saving medication) two weeks ago; the fluid came back cancer free. That was a huge relief.

Last week, I saw a pulmonologist about the "spiculated" nodule on my right lung. Due to its' size, 4-5 mm, he is going to repeat the CT scan in two months; this will determine the next plan of action!

These are the possibilities:

1. It has disappeared! Of course, I will be praying for this option. lol

2. It has remained the same; this will put me on a long term, waiting for the other shoe to drop, plan; continued observation.

3. It has slightly increased in size; this option will be cause for a needle biopsy to check for cancer.

4. It has greatly increased; this will result in its' removal, obviously through surgery. It would then be biopsied.

Of course, I asked what worse case scenario would actually entail, and what would it mean for the rest of my life; in other words, will I die of lung cancer, any time soon?

This was his answer:  he feels that due to the fact that this nodule was discovered at such a small size, that once removed, if it was cancerous, he would perform a PET scan, and if that was clear, he would consider me cured. No chemo, no radiations.

I told him that I could live with that!

So, for now, I shall wait and see; fingers and toes crossed!

Five years down the road, I am still Dancing My Way Through Leukemia!!

Wednesday, February 10, 2016

Five Year Cancer-versary and Thoracentesis Results!

Maybe I should mix up my own remedy!
It is hard to believe that I have been battling chronic mylogenous leukemia, for five years! I still remember the phone call, "Michele, I am sorry to tell you this, but you have leukemia."

Since that moment in time, I have become educated in the disease and treatment options, and encouraged others to become their own self advocates. Understanding CML and its' treatment is of utmost importance.

That being said, it has been a roller coaster of a ride! Good days, bad days, scary days and great days. I am grateful to still be here and enjoying my life despite the new challenge that is currently taking over my mind.

It seems that one of my greatest fears, of developing additional health concerns, has become a bit of a reality. I remember asking whether or not my life saving treatment could lead to other cancers, or health issues. The answer that I was given was that they really just do not know.

After several routine medical check-ups, and an elevated CA125, I had a chest and abdominal CT scan. This scan revealed pleural effusions, from the Sprycel and a small spiculated nodule, on my right lung.

My left lung was drained last week, and I received great news, on my five year cancer-versary; no cancer in the fluid! One victory in this new, two step battle! I thought that it was ironic, to receive that news, on that day.

The next step, and more concerning battle is the nodule; my films have been sent to the pulmonary nodule committee, here in Boise, and I have an appointment next week to discuss the the plan of attack.

I have been a good girl, and have yet to Google "spiculated nodules" and am just praying that this too will be a victorious; no cancer nodule.

The very worst part of this whole process is the waiting. I never dreamed that I would actually ever face the possibility of yet another cancer; I figured that I had already taken the bullet by living with a chronic cancer, and that I was done.

I am trying very hard to not focus on the what ifs' and I keep telling myself that this nodule is going to be benign, and that everything is going to be alright. But, I must admit, there is a part of me that is frightened; I just do not want to play this game!

I suppose I will just have to stick my head in the sand for the next week, and then deal with whatever the physician recommends.

Until then, I am thrilled that after five years of living with CML, my PCR is .06 and under control; I am grateful for the research and development of TKI's and the opportunity to have been blessed to be able to benefit from them.

I continue to pray for strength and guidance and appreciate all of those who read my stories and are such a great support.

Blessings to all,

Friday, February 5, 2016


I have had CML for almost five years. During this time, after being hospitalized for treatment in the beginning, I have been on varying doses of Sprycel. My PCR has remained at a manageable level throughout these past five years, even reaching a undetectable state, twice.

Tips for Hospital Stay

I have suffered from a revolving list of side effects, some minor, others more extreme. They seem to come and go, with my quality of life being mostly satisfactory, for someone that lives with chronic cancer.

One of the most annoying, and recurring, side effect has been pleural effusion; this is a build up of fluid in the sac around your lungs. Most often this occurs when my oncologist and I decide to increase my Sprycel, in order to achieve a more desirable PCR. It has been a balancing act for five years.

During the past six months, I have been on 140 mg of Sprycel, six days a week; certain that I would develop pleural effusion. After seeing my oncologist, I did not disappoint; pleural effusion in both lungs, which results in a Sprycel vacation. Not necessarily a bad thing! Still waiting for my PCR result which will be all telling; will the increase in Sprycel have been worth it?

Flip over to my "other" medical history; borderline serous ovarian tumors, removed ten years ago. I follow up once a year with a gynecological oncologist. Part of my routine exam consists of a blood test called a CA 125. Apparently a reading below 35 is considered "normal" My last two tests (even though I was never informed that two years ago it was 202, and elevated) were both elevated. 2014 result 202, 2015 result 121.

While it would appear that a drop in the CA 125 from one year to the next, is a good thing; it is still above the normal range. This led to a CT scan to rule out any tumors in my abdomen as abnormal cells are still there, following my complete hysterectomy, ten years ago, due to the ovarian tumors.

Fortunately there were no abdominal tumors, and as expected, my pleural effusions became the main focus and concern. The effusions themselves are not of major concern as they are known side effects of Sprycel; and something that I deal with once or twice a year.  But the fact that I also have a "small" 3-5mm spiculated nodule on my right lung has caused concern for the nodule, as well as the fluid. (due to the ovarian tumors)

Sooooo, my most awesome internal medicine physician and I decided that it would be beneficial to drain any remaining fluid, after my Sprycel break, and have it analyzed, hopefully ruling out abnormal cells, which would likely be from the ovarian tumors.

The spiculated nodule and CT films will be reviewed by a pulmonologist committee next week.
In the meantime, I had a procedure called a thoracentesis. Of course, I was freaked out; both for the procedure and the results! I had one bone marrow biopsy without sedation and that was excruciating, which led me to be wary of this procedure, too.

I did not know much about it, other than they stuck a needle between your ribs and into the pleural cavity; then sucked out the fluid.

Upon arriving for my appointment, I was indeed informed that I was correct in my assumption of the basics of the procedure.

What I can tell you, however, is that it truly was not nearly, as uncomfortable as I had anticipated. The first thing they did was an ultrasound to assess which lung they would drain. Surprisingly enough it was my left lung; the one that had the least fluid, two weeks prior on the CT scan; the right lung was nearly empty of any excess fluid.

After answering every single question that I had, to my satisfaction, they began the procedure. I was sitting on a table, leaning onto a pillow that was elevated with a ladder!

First they determine, through ultrasound where they will enter your chest; and they mark it. Then they used some sort of C02 cartridge to numb the skin; feels a bit like being snapped with a rubber band; numbness quickly spreads to the area.

Then you feel a bit of a poke as the needle starts to go between your ribs; at this point they inject more lidocaine. It hurts a bit but does not last very long, then they proceed to enter the pleural sac with a needle; once through the sac they place a catheter into the area to be drained and remove the needle. (this was a big relief to me)

Throughout the procedure, the technician kept me informed of everything he was doing. At one point I asked if the worse part of the procedure was over and he said "Yes" we are almost done. I could hardly believe it.

After he pulled the catheter out, I had a major coughing fit! He said that it was normal, as the lung refilled so quickly. I was quite surprised at how much better I could breath; Duh!

I asked him about the color of the fluid and what range of colors were "typical" and how much fluid he removed; 500 plus ml. It was shocking to see the amount of fluid in the canister, along with two syringes of 50 ml each. We all did a swirl of good luck over them, before he sent them to the lab.
I have to say, that I walked out or there with a smile on my face!

All in all, the procedure was a piece of cake; as with all medical procedures, make certain that you are entirely comfortable with what is being done to you. Understand the process, the risks and the benefits.

I went as far as to tell the scheduler that I wished to speak to the head of the department; I told them that I wanted the best technician to perform the thorasentesis. I told them that I wanted the one who had punctured the fewest lungs and caused the least infections, and that I knew they had statistics on that sort of thing!

Of course, I was very nice about it! And she even laughed; I told her to schedule me with the person she would send her child to.

Remember to always stand up for yourself and express your fears and insist that your questions are answered.

Here is to normal results!

Thanks for reading.

Bricks for the Brave!!