Monday, October 24, 2016

Fighting for Fighter Shirts!


It was another great year for the Boise, Idaho Light the Night walk for the Leukemia & Lymphoma Society. Along with my friends and family, Dancing My Way Through Leukemia raised $2250, and our little city of Boise is close to $275,000 to donate to blood cancers research and support!!

The night was a huge success and I could not be prouder of the Boise Chapter, of the LLS. They work long and hard for those of us fighting blood cancers, and go above and beyond the call of duty.
Several years ago, I wrote a post about feeling uncomfortable and unsure about the representation of the shirts that we are all given to commemorate the Light the Night Walk. There were three choices, In Memory, Supporter or Survivor; I felt that there should be another category; Fighter.

I found in wearing a "Survivor" shirt, that I was approached by many other survivors; they wanted to know when I finished treatment, and what type of blood cancer I had. I became weary having to explain that I had a chronic type of leukemia, and that I would be undergoing treatment for the rest of my life.

So, I got to thinking; I figured that I was not the only person still fighting the good fight. There were many patients that were still undergoing chemotherapy, radiation and in the throes of bone marrow transplants. Yes, we are all technically "surviving", however, we are still fighting, every single moment, of every single day.

I felt that those of us that have yet to ring the "Cancer Free" bell, would be better served with a shirt that said "Fighter" on the back; in hopes to some day be cancer free and graduate to the "Survivor" status.

I know that many people undergoing treatment may consider themselves "survivors" and I do feel as though I AM a survivor, per se, but in this arena, I feel that the differentiation between "Fighter" and "Survivor" is valid and important.

Differentiating between "Survivors" and "Fighters" is a visual aid that shows all of the people participating in the Light the Night walk, clearly how many people are currently in treatment, and how many survivors, their efforts have saved.

It allows those of us, who are undergoing treatment, to commiserate with one other, and clearly shows who we can congratulate on their success in beating blood cancer. It stops those of us, still in treatment,  from having to explain that we don't have an "end"date...yet, and gives us a boost in the belief department, that we are warriors.

Fortunately for me, our Boise LLS office stepped up to the plate and printed Survivor/Fighter shirts; which is not exactly what I want, although if they had Survivor/Fighter shirts AND shirts with just Survivor, I think that would be AWESOME!!

That was last year; fast forward one year.....

I was told that the "head office" of the LLS gave the Boise office a little bit of grief over adding "Fighter" to our shirts. But in grand Boise fashion, our office stood up for the Fighters of Blood Cancer and did not back down; they had Survivor/Fighter shirts printed. The National LLS office feels as though  all of the shirts should be the same, and that there should be unity across the board.
SO, the Boise Chapter of the LLS is standing by me, and all of the blood cancer patients, still in treatment, and we are going to push to make "Fighter" shirts available for ALL chapters, in all cities and states, that hold a Light the Night Walk!

How awesome is that??

We are doing our part, and I would love the help from all of you. If there is enough interest and enough comments, I will put together a petition that we can submit to the Leukemia & Lymphoma Society to push for next years Light the Night Walk, shirts; Fighter AND Survivor!


Thursday, October 13, 2016

Light the Night 2016; My Gratitude

Light the Night 2016 was a HUGE success! The Leukemia & Lymphoma Society in Boise is AMAZING! I believe that when all is said and done, the Boise chapter will have raised over $300,000 for Leukemia and Lymphoma research and support.

Thank you to all of my friends and family, that donated to this worthy cause; this year, we raised $2250, a personal record! Pestering and bugging friends and family for donations is not high on my "fun things" to do list, so I appreciate you all for putting up with, and supporting me during the month of September, which happens to be the month before the Light the Night Walk and Blood Cancer Awareness month.

Blood Cancers certainly do not receive the attention that Breast Cancer receives, but with your continued support and encouragement we are getting there!

Approximately every 3 minutes one person in the United States (US) is diagnosed with a blood cancer.

Approximately every 9 minutes, someone in the US dies from a blood cancer. This statistic represents approximately 160 people each day or more than six people every hour.

With help from people like you, research is getting closer and closer to a cure for blood cancers.
I have lived with CML (chronic mylogenous leukemia), for 5 1/2 years, and I know far more about blood cancers than I would have ever dreamt. CML appears to be one of those "fluky" cancers that just "happens".

Some people consider it a "good" cancer, personally, I do not consider any cancer "good", but I am grateful that research and treatment has gifted me with 5 1/2 years of life, after diagnosis.
Knowing that I will have cancer for the rest of my life, or until a cure is found, can be daunting. I treat my cancer every day and tests are run every three months to monitor disease progression or stability. Over the years, I have accepted this new way of life.

Whether or not I will ever fully adjust to the changes in my bod,y caused by my treatment,  I don't know; but I am trying!

I think the most difficult aspect of living with a chronic cancer, are the side effects that occur from treatment. They change without warning and often correlate directly to specific lot numbers of the drug that those of us, with CML, ingest.

CML fighters never know what is in store from day to day. We deal with musculoskeletal, bone, joint and nerve pain, major fatigue, pleural effusion, flu-like symptoms, headaches, blurred vision and the list goes on and on, on a daily basis. It is sort of like a grab bag; you never know what you are going to get.

But this is the price we pay; we pay this price daily in hopes of a cure. A cure that will allow us to pick up where we left off, prior to being diagnosed with cancer. Of course we all know that there will likely be consequences to many years of taking a toxic drug, but it is a price worth paying.

So, from the bottom of my heart, thank you for supporting me and the LLS, in our Light the Night Walk; with every single penny, we are one step closer to a cure!










Saturday, September 10, 2016

Light the Night 2016

Our Most Awesome, Alisha!!!!  Boise, LLS Revenue Director
It is hard to believe that I have had cancer for five years and seven months! How crazy is that?? Looking back at my journey brings so many mixed emotions; gratitude being at the top of the list. I have been blessed by so many, and I am so grateful to still be alive!

For the past two years I have participated in the Leukemia & Lymphoma Society's Light the Night Walk. This organization has helped to save thousands of lives and with help from donations, from people like you, I pray that some day, there will be a cure for my type of cancer; chronic mylogenous leukemia.

Living with cancer is arduos. It is unpredictable and weary making. That being said, life is a gift, and so worth living. I prefer to do my very best in ignoring the fact that I have cancer; I push through the fatigue, attempt to ignore the nausea, nerve, bone and muscle pain, and dance to the best of my ability, despite the struggle to breathe.

I find that laughter and optimism help to mask the difficulties, and spending time with friends and family, make every single day worth the effort.

I hope and pray that some day there will be a cure and that CML will lose its' "C", somewhere along the way; you see, the "C" stands for chronic, meaning  persisting for a long time or constantly recurring.

With help from you, the LLS and researchers across the globe, I believe that I will live to see a cure for chronic mylogenous leukemia, and that some day, I will be able to breathe and dance without the limitations that are currently a part of my every day life.

I thank you with every fiber of my being for your support; both monetary and emotional. I would love to have you join me and Joe, on our Light the Night walk on Oct. 6th, 2016.

This year the festivities will be held on the Blue Field at BSU!!! We had the pleasure of meeting a few of the football players and Associate Althletic Director, Brad Larrondo who have joined the LLS in our fundraising efforts, at our Kick-Off party, a few weeks ago.

Brad's committment to our Light the Night fundraiser is commendable, and the festivities are certainly going to be a night to remember! I mean come on, who gets to walk on the blue field???

We DO!!!

Hope to see you there!

Thank you in advance for your donation,
Michele

Monday, May 2, 2016

Getting Older is a Privilege; Not a Punishment!!

My parents; the ones who gave me life!
Today is my 57th birthday; it is the first time that I have spent my birthday in tears. My tears are happy and sad tears; the flood-gates opened last night, shortly after midnight. My online crochet buddy wished me a Happy Birthday........the only other person that used to wish me Happy Birthday, precisely at midnight was my mother; my friend and I decided that she was my mother's messenger this year.

It never really occurred to me that I would miss that call, as much as I did. My mother would always say, "Happy Birthday my sweet, precious baby girl, X amount of years ago you came into my life, and you have filled my heart with joy ever since. I love you so much, you know that I do, right?"
Of course, I would always say, "Yes, Mom, I know you love me and I love you, too. Thank you for bringing me into this world, you deserve the birthday wishes today; you are the one that did all of the work!" So, so sweet and caring she always was; so needless to say, I am missing her terribly, today.

That emotional start to my birthday did not end; waking to all of the sweet birthday wishes from so, so many just continued my journey down the happy, sappy Birthday Road. The Internet may be a lot of things, some good, some bad,  but one special thing that it is, is a connection to so very many, that you would otherwise never be able to connect to. I cannot thank each and every one of you well wishers enough, for all of the kind words and wishes.


My Kiddos!
That being said, I look back at all of the years I dreaded "getting older" and I realize how very foolish I was; growing old is not a punishment, it is a privilege. A privilege that I no longer wish, did not arrive so quickly, year after year. Growing old is the greatest gift EVER!

Do I wish that my body still performed as my mind thinks it should? Hell Yeah!! Do I wish that I could take my life lessons back to a younger me and avoid some of the mistakes that I made? Sometimes. Do I wish that I could start all over, as a child, a teenager or a young adult? Heck NO!

What I do wish for, is that I will continue to grow older and wiser, and that I will be around for a very, very long time; cherishing my family, my friends and my life with every single bit of gusto that I can muster.

The Grands and Hubs!
That I will be able to continue to share my experience of living with a chronic cancer to all that I am able, and that I can continue to share my joy of living, to all I meet.

From the bottom of my heart, I thank each and every single person that enriches my life, not only today, my birthday, but every single day in between, too!

Today, is a GREAT DAY; tears and all!!



Son, Daughter  in  Love and Fam!!

Saturday, April 2, 2016

Yes, I am Going to Try Plexus!

Once upon a time, a long time ago, I was an extremely successful representative in a multi level company called ACN. I loved the company, the compensation plan and the services that they offered.

This structured MLM was, in my opinion, brilliant! The problem with MLM, once again in my opinion, is that the general population does not have belief in this type of business and does not have belief in their own abilities. Sad but true, most are more willing to work for some one else, rather than rely upon their own selves.

What many people do not realize is that nearly all businesses run in an MLM manner; you have the owner, or owners of the company and the "jobs" that fall in line from the top down; each and every position, an essential part of the structure, of the company.

The difference is with a "job" you are paid for the work that you do, either hourly or with a salary and it is guaranteed. It does not matter if your "work" produces a $10 profit for the company, or a $10,000 profit for the company, you still get paid the same amount. Unless you own the business there will always be a ladder of people from the bottom to the top; just like MLM.

In an MLM situation, your destiny lies in your own hands; you will only be successful if you help others become successful, too. You are not guranteed your hourly wage; you are in charge of your own destiny and your own pay check; the sky is the limit, and you do not have to "wait" to be promoted. For many that is much to risky, and too scary to ever entertain.

I find it sad that humans do not believe more in themselves and truly believe that instead of being a rung on a ladder, they can actually BE the ladder, climbing to the top of their own empire.

All of that being said, I am taking a leap into the world of Plexus; not necessarily as a business opportunity (shame on me) but in hopes of regaining some of my pre-CML energy and overall health.

I have been observing the testimonials of so many people that I personally know for the past two years, with and without chronic mylogenous leukemia, and have marveled at how convinced they are that their overall health, well being and energy levels have improved on the Plexus products; I no longer wish to be a skeptic.

What do I have to lose? If it works, then I benefit by feeling more like my old self, if it does not, then I am still wearing the same shoes, as I was wearing before I gave it a shot!

And hey, if I DO lose a few of those TKI pounds, then there is an extra added bonus.

I promise not to become one of those annoying MLM Facebook friends that are constantly begging their friends to join them in a better lifestyle, but if you have any questions, feel free to ask!

I shall post my progress on a weekly basis; feel free to read it, or delete it!
Off to drink my very first "Pink Drink"!

By the way, my husband is going to join me on this journey!

Just thought I should keep you posted!

Tuesday, March 15, 2016

Sprycel Dosing: On and Off Days

Since many have asked, I thought it prudent to explain my treatment for chronic mylogenous leukemia.

I was diagnosed with CML on Feb. 9th, 2011, a little over five years ago. After much research and doctor shopping, I selected an oncologist that not only is a CML specialist, but connected in the realm of CML research, as well. For me, I wanted some one at the top of the CML food chain, as I knew that I would have CML, for the rest of my life, and I plan on being around a very long time; I still travel from Boise, Idaho to Los Angeles, Ca. to see him.

That being said, my Sprycel journey has been an up and down journey, full of peaks and valleys. The manner in which my treatment is established correlates directly to my PCR results and the common Sprycel side effect; pleural effusion. During the past three years, my PCR has ranged from .0000% to .432% and I have had periods of pleural effusion, along with several bouts of double pleural effusion.

A common question that often arises is, "Since you suffer from pleural effusion, why not just change TKI's?" I have often had this very same discussion with my oncologist, and my reasons are quite simple, to me, although maybe not very logical to others. I prefer to take a TKI that does not have a Black Box Warning, and there "seem" to be so many people that suffer greatly, on Gleevec, that I am reluctant to take that risk, until I am left with no other choice.

As far as the newer TKI's are concern, my oncologist prefers to monitor their use, for a while longer, before leaping to one of them.

This being said, we are constantly adjusting my medication regimen to avoid pleural effusion, have an acceptable PCR, and as few other side effects as possible,in order to give me the best quality of life that we can.

This results in different doses of Sprycel, in varying frequency, throughout the week. My best PCR results seem to be when I take 140 mg, six days a week, however, I always develop PE after about six months. At that point, I take a few days off, the PE resolves and I resume my treatment.

Currently I am taking 140 mg, five days a week; down from six days per week for the past six months. My PCR will be tested next month to see the result of this schedule.

My oncologist truly believes that my body needs the break of one or two days a week, to allow it to recover and rejuvenate from these potent drugs. He feels that this is the best choice for me, although others believe that you should never skip a day; he believes that not taking this break may lead to toxcicity, in my body. Thus far, for the past five years, my PCR has not risen above .432, which he feels is an acceptable PCR. My latest PCR was .06, after six months on 140 mg, six days per week.

Unfortuantely, the PE always creeps in at this dose, and a reduction in days, always follows. I am always disappointed when this happens and I keep hoping that some day, my body will adjust to this dose, and allow me to remain on it, as I have my best results during this period.

I hope that that answers any of the questions that you may have, on the "why" I have "No Sprycel" days on my calendar, and assures you that these days are at the recommendation of my oncologist; please do not make any changes to your treatment based on any thing that I say, but please feel free to discuss my situation, and treatment,  with your own oncologist; if you wish.

I implore every single person that lives with CML to find the best possible CML Specialist that you can; one that will answer all of your questions, spend time discussing your frustrations and fears, and be willing to discuss your treatment, to find figure out what is best for YOU! Not just follow protocol "because", but to treat your CML, specific to you.



Friday, March 11, 2016

Side Effects SUCK!

Apparently I had been living in Wonderland just a tad too long; life was becoming more "normal" than it had been, since my chronic mylogenous leukemia daignosis, five years ago. There were more days days that I did not think about CML, than days that I did, and more days that I felt relatively "well". My side effects were minimal, and through the years I have learned to cope with, and accept, my new normal.

I suppose that the universe must have heard me marvel at how awesome everything was  going, here in Wonderland, and decided that it was time to yank me back to reality! This yank began with what I thought was a throwback, to my old back antics. I reached for something and my hips shifted to the left, and my shoulders shifted to the right; this knocked me right out of commission; total bummer.

That episode lasted approximately ten days, but during that time, I realized that many other debilitating side effects decided to join the party. I currently have that all over achy feeling, muscle and joint pain, headaches and that terrible neuropathy in my CML Hands, which  keeps me up, all night long; a harsh reminder that I still have cancer.

What I also realized was that I had started a new bottle of Sprycel. I grabbbed the old one and just as I had suspected, it was a different Lot number than the previous five bottles. I then went to the calendar where I record my Lot Numbers and side effects and marvel at the fact that I have not had one pain entry in five months!

I really ahd been living in Wonderland! I had found a golden supply of Sprycel; one that worked for me. Acceptable PCR and acceptable amount of side effects. Sad truth however, I knew that eventually the party would end; I just never realized how abruptly it could happen.

Just when you think you are in control, you are reminded that you are not. You are at the mercy of so many different aspects of the medical profession; oncologists, pharmacists, researchers and drug manufacturers. Because I have a chronic cancer of the blood, I either choose to treat the cancer, or not.

Because I love life, and all of the people in my life, I choose to keep on- keeping on, praying that someday there will be an actual cure. A friend recently posted a most perfect saying: "When I am resting because my body is weak, I need to remember that I am not wasting the day. I am doing exactly what I need to do; I am recovering."

While this is not an easy thing to accept, it is my reality, and I must accept that.

On the up side; I started a new bottle of Sprycel, with a new Lot Number, last night. I am praying for these side effects to lessen, so that I am able to rejoin the living.

If the odds are in my favor, and it is a great bottle of Sprycel, you can bet that I will not waste a single moment, of my days in Wonderland!

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 the 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 dyeing my hair. I am still in the "can't wait to see what it looks like in the end" stage, but the 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!



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.

Brrrr!
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,
Michele

Friday, February 5, 2016

Thoracentesis

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 asses 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 the 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.

Friday, January 29, 2016

When Routine Medical Visits Become Worrisome

As you may or may not know, I live in Boise, Idaho. My CML oncologist is at UCLA and my gynecological oncologist is in Palm Springs. (borderline ovarian serous tumors 10 years ago) Needless to say, travel for medical check ups have become a part of my life.

On occasion, I roll in and roll out of these appointments unscathed; everything status quo; other times there are hitches.  The visit with my CML oncologist went pretty much as I anticipated; moderate pleural effusion in both lungs.

I say that I expected this because for the past six months I have been taking 140mg of Sprycel, six days a week, as opposed to five days a week, to try and get my PCR back to a ".0something" number. Three months ago it was .074, the best PCR I have had in eighteen months.

My body tolerates 140mg five days a week quite well, but every once in a while, I want better numbers and go for the gusto, upping my dose! This typically results in a great PCR, but also pleural effusion! Guess I can't have the whole ball of wax!

My next appointment was to the gynecological oncologist; this visit has been so routine for 10 years, that I never expect there to be a hitch; but this time: FOOLED YA!!

My CA125, a blood test that is used by gynecologist as a tumor indicator, was elevated. I guess up to 33 is "normal" and mine was 102. Not extremely elevated, but given my history, a CT scan was ordered "just to be safe". Grrrrrrrrrr....

As luck would have it, apparently I have 4-5 mm diameter spiculated nodule without calcification and a 3 mm diameter calcified nodule of the right middle lobe. What ever the heck that means! Hopefully NOT lung cancer!

Having to keep on top of CML is difficult enough, I cannot even imagine dealing with another serious illness!

So, here I go on another medical journey, I have already sent my CT report to my internal medicine physician in Boise, have an appointment with her on Tuesday and she has sent in a referral to a pulmonologist.

I am trying not to lose too much sleep, and trying not to give in to the what ifs', but I have to say "what the @$#!? " has come out of my mouth more than one occasion!
I often wonder whether or not I am just plain dense, and therefore have many lessons still to be learned, many challenges to overcome, or if  I am just an integral part of someone elses' learning process and journey. Either way, I certainly wish that I could catch a break!

Looks as if 2016 is starting off with a BANG!!

Blessings to all; please keep me in your thoughts and prayers if you have room, as I see many more tragic journey's than my own......

Bricks for the Brave!!