Tuesday, June 24, 2014

CML is Unpredictable: Count Your Blessings and Pray for Strength!

What I am beginning to learn, and accept about living with cancer, is that it is unpredictable. This past year has been filled with a plethora of challenges, sprinkled with some triumphs. I have struggled greatly with side effects from my daily medication that attempts to keep my cancer at bay, but I have also had the euphoric feeling of actually coercing my leukemia, into a non-detectable state; twice!

The non-detectable state arrived in the midst of my most difficult side effect period, but it was a trade-off that I was happy to make.  What this non-detectable state represented to me, was the hope that I would be able to reduce the dose of my medication, thus reducing my side effects, while continuing to maintain a great response to my medication. In addition to a lower dose of medication, and a better quality of life, a non-detectable PCR also lends itself to more favorable, long term prognosis.

So, needless to say, this overly optimistic person truly believed that not only would I remain in a remission state at a lower dose of medication, but that eventually I would be one of those lucky people to enter a trial that would allow me to continue to maintain “remission” without medication.

Hahaha….joke’s on me! After six months of a non-detectible state, my BCR/ABL gene raised its’ ugly head once again. It showed up at a higher level than it has been since my diagnosis; .4% on the International Scale. I know that that may not seem like much, but I certainly would have preferred a zero, after the decimal point, prior to a number.

What this actually means is that 4 out of every 1000 cells are jacked-up! This is a significant increase in my CML world, and it means that my response no longer qualifies as a major molecular response (less than 0.1%) which is the goal for everyone beyond a year of therapy. I am on year three, plus.

What does this mean? Well, the first thing that this means is that I increased my Sprycel from 70 mg per day, to 100 mg per day with a repeat of my PCR after four weeks. (I am hoping for lab error?) Fortunately, the increase did not cause too many additional side effect issues. I took the Sprycel diligently every day, and repeated the PCR test: results were essentially the same; .432%.

I received that news a few days ago, but have been too distraught to write about it until now.

You may be wondering, now what? Well, besides having the wind knocked out of my sails, what this means is that my Sprycel is being increased to the maximum dose: 140 mg six days a week. PCR to be repeated in August, when I see my oncologist, which means that I will be living on pins and needles, until the PCR results in September; a total suck!

So far I have taken the increased dose twice; and I can already tell that it is going to be a long and bumpy road. The pain and numbness is already returning in my hands and arms, and the fatigue is settling in. I am going to accept the increased side effects as signs of my body working really hard to put this leukemia, back into remission. I have done it before, and I can do it again!

Fortunately, it is summertime and I will have the best distractions possible, arriving in two days! Joe and I are so excited to begin our revolving door of visitors for the summer. There is nothing better than grandkids to keep me distracted from dwelling on my latest test results. Hopefully, I will be able to keep up with, and enjoy them the way that I want to, but whether it is playing in the yard, baking cookies or just reading books, it will not matter, as we will be sharing the most precious gift of all; time.

I am so looking forward to spending time with our family; I love them all so much!

I will attempt to keep you updated as best I can, and I wish for all of you a great summer!

Tuesday, June 17, 2014

The Price of Living with Chronic Mylogenous Leukemia

This is a complicated subject to address because we all have struggles, we all have financial burdens and we all must do our best to survive. I hope that you do not misinterpret my observations as being ungrateful for the opportunity to live, but more as a window into the life of a person that lives with a chronic cancer, other chronic illness or condition; or into the life of a person that has undergone treatment, been cured, but now also lives with many of the same, recurring financial struggles.

Medical strides are a blessing, but they do come with a price.

When you hear the word “cancer”; what is your first thought? My first thought was “How long do I have to live?” My second thought was “OK, prepare me for the battle; I intend to fight.” What never entered my mind was the impact that living with chronic cancer would have on our future, financial stability and lifestyle.

As we all know, medical care and expenses are often difficult to contend with. One serious medical event can have devastating, life-altering and often permanent effects upon an individual, or family. I will not get into medical insurance and the likes of Obama Care here, but I will focus more on the reality of living with chronic cancer; one that is never cured. This type of cancer, along with other chronic illnesses, is plagued with ongoing expenses that last an entire lifetime. Many others that have been “cured” of their disease will also live a life full of complications, with continuing medical expenses and additional medical treatments’ that are a direct result of their “cure.”

This creates a long-term financial burden.

When I was first diagnosed with leukemia, I did not realize how large the financial burden that living with chronic cancer, really can be. The medication alone, if not covered by insurance or other financial assistance, runs more than $15,000 per month; fortunately, there is help available, as no one could ever afford to stay alive at this price.

What this does mean however is that those of us living with CML, now have another permanent, non-negotiable, monthly expense added to our budget;  a necessity, just like our house payment, utilities, and food. For many, this added monthly expense creates such a hardship that many lose their homes. For me, I am extremely lucky to have a low co-payment for my medication; of course, the payment for the insurance costs a fortune, but I am very grateful that for now, we are able to afford it. There are many others’ that struggle monthly, just to afford their co-pay for their medication and their premiums for their health insurance.

That being said if living with a chronic cancer was simply managed with a large health insurance premium, and monthly prescription copay, life would be pretty darn good! The problem with that scenario, however, is that that just is not the case; being given the gift of life is much more costly and complicated than that.

You see, in a perfect CML world, you would only have to see your oncologist once, every three or so months; you would receive a checkup, a pat on the back and a “Keep up the good work” speech and carry on with your life. But because of the uniqueness of this type of cancer, there are very few CML specialists out there and they are scattered from hither to yon; so for me, as well as many others, this means a long distant trip; for us, it is nine hundred miles, one way.  So add the cost of long distance travel, a minimum of four times a year, to the price we pay, to continue to live and receive appropriate medical treatment.

If you are lucky during these visits, your extremely expensive lab tests will come back with acceptable results; thus allowing the cost of your medical travel to be held to a minimum of four times a year. If not, you will have to undergo additional expensive testing, and see your oncologist more frequently, which adds additional expense to your already stretched “budget.”

Of course, those quarterly doctor visits only deal with your CML. There is the additional expense in dealing with additional physicians because your truly amazing, life-saving medication causes many other complications, conditions, and side effects, for which you require more medications, with more co-pays!

In addition to all of these doctor visits, it is not uncommon for CML patients to make many trips to the Emergency Room, throughout the year. This year alone I have had an MRI, a Nerve Conduction Study, and Electromyogram, a chest X-Ray, an echocardiogram, a CT Scan and more blood tests than I can count; even with health insurance, I am drowning in medical bills! The results of these additional tests often result in complications that lead to additional treatments, which may or may not lead to a hospital stay and always more medical expense.

So what is one to do?

A common answer to that question would probably be to “work.” This leads me to another aspect of “living” with cancer on a day to day, everyday basis. The truth of the matter is that those of us living with CML, or other chronic illnesses,  often feel utterly and completely miserable, every day; making it extremely difficult to survive in a working environment on a consistent and regular basis. As a result, many have lost their jobs, or are unable to find one. Often, the energy required to just tend to our own basic daily needs can be more than many of us have to expend.

Needless to say, this creates an additional financial burden. For those of us that are fortunate enough to have medical insurance and significant others to carry our burden, we must remember to count our blessings and show our gratitude. Living with cancer is extremely expensive and it takes a toll not only on your pocketbook but on your heart and soul, too. And this does not even begin to discuss how it financially impacts all of those around us, too.

I do not know what the answer is, but sometimes I wonder whether or not those of us that are paving a path into the future treatment of cancer, could be cut some slack; somewhere. Those of us living with CML are the guinea pigs of future cancer treatment. We are a whole new breed, that a decade and a half ago, would not have had the opportunity to figure out “how” to survive the financial burden of living, long-term, with chronic cancer.

For this I am grateful, and I will continue to try and earn whatever I can by peddling my meager wares in my Etsy shop and by writing; my blog of free information currently earns approximately ten dollars per month!  It isn't much but it is something!

I appreciate ALL of your support; monetary or otherwise and plan to continue to “give back” to our CML community.

Blessings to all and thanks for reading!

Saturday, June 7, 2014

Live or Die; Only Your Insurance Knows

After several days of trying to receive the correct dose of Sprycel, the pharmacy called with the good news; “Your prescription is ready, would you like to have it delivered?” Of course my answer was yes, duh! The gal on the phone promptly confirmed my address and said, “How would you like to pay the   co-pay of $598.63?”

My heart literally dropped; my co-pay has always been $25. I have always felt fortunate to have decent health insurance coverage through my husband’s retirement plan, but I never realized how grateful I should have been. I told her that that was impossible, and that my co-pay was, and had always been $25. During the past two years nothing had changed; why was my co-pay now totally unaffordable?

She seemed baffled as I argued with her; I insisted that she speak to a supervisor and to call me back. About an hour later, she called me back and told me I was correct, that my co-pay was $50, not $598.63. $50? It WAS $25. I know that $25 may not seem like a big deal to some, but in the larger scheme of things, it is a big deal to me!

I continued to argue and question the $50 copay and she stated that the assistance that I “used” to receive directly from Bristol Mayer Squibb was no longer an option, and insisted that the co-pay was $50. I relented and am having me medication delivered the first of the week. Just know, I am not giving up yet!

That being said, I have been so close to tears since those phone calls. I realized, for the first time, just how precarious living with CML can be. I realized that at any given moment, or month, my insurance may no longer pay for my medication, for reasons completely beyond my control. My life is literally held in their hands.

It is a sickening feeling that each and every month could be the beginning of either the end, or a really difficult battle. I have extreme empathy for those that are in this same situation; it is scary, it is real and it is eye opening. We all live on a tightrope that may snap at any time. This one incident has really brought my chronic disease, once again, to the forefront of my mind.

I will never take my monthly prescription for granted again, and I will be researching all of the options available to me, and my fellow CML’ers.

Now, if I can just get that sick feeling out of my gut, and can get on with my day.

Friday, June 6, 2014

Quick Medication Reminder: Be Your Own Self Advocate!

I know that I have harped on this before, but once again, my prescription dosage is in my hands. Since my recent PCR went from undetectable to .40, my oncologist increased my dose of Sprycel from 70 mg to 100 mg. I receive my medication from a mail order pharmacy called Optum Rx.

They called as usual, stating that my prescription was due to be refilled; fortunately I asked them what the prescription was for, their response was 70 mg of Sprycel. Now my dose of Sprycel has fluctuated between 140 mg (2, 70’s), 100 mg and 70 mg for over three years, but for some reason or another, they only ever have the last prescription on file despite the fact that every prescription is for twelve months.

This is TOTALLY annoying because trying to get a “new” prescription from my oncologist’s office can be like pulling teeth! I cannot tell you how many emails and phone calls it takes to get one prescription correct. Yesterday, being no different from time in the past I received the infamous phone call; “Hello Michele, we received your new prescription and would like to set up delivery.” Me: “And what is that prescription for?” Them: “It is for 70 mg of Sprycel.” Me: “Of course it is; that is exactly what you HAD on file; I need 100 mg.”

So, needless to say, I am back on the phone and sending emails AGAIN today; luckily I have/had a spare bottle of 100’s. Moral of the story; ALWAYS double check your pharmacy and your pill bottle with your prescription and your doctor. And always verbally confirm, with your doctor what medications he is prescribing, how much and how often. We cannot afford to rely on anyone, except ourselves, when it comes to our health.

Errors are made daily; do not fall prey to mistakes made by others. Educate yourself and be your own self advocate.

Addendum: I just made "that" phone call, my oncologist's "go-to" person actually answered the phone; shocker! When I told her who I was and why I was calling she said, "Oh, Michele! Dr. and his nurse practitioner have been going round and round about this all day; let me call you back!" All I could do was shake my head and laugh; I give!

Thursday, June 5, 2014

Follow Up Visit with Internal Medicine Doctor; Weight Gain and Head CT

Yesterday I met with my new doctor; for a change, it was not a visit with an oncologist. She reviewed the previous test results and my overall well-being. We discussed the decreased fatigue and hand and foot pain and attributed it to the treatment for the Hypothyroidism. I have currently been taking .05mg of Levothyroxine for about two weeks.

My two biggest complaints are my continuing increase in weight and my continual headache. She is hoping that as I continue the thyroid medication that my weight will either decrease or at least become stable. As far as my headache goes, it is a headache that is almost always there, on the back, right side, of the middle of my head. It is not extreme, but does seem to increase with activity, such as dance. It has probably been there for about two-ish months.

She decided that with all of my lovely health issues and side effects, it would be best to not take any chances and she ordered a CT scan of my head. I imagine that it will show that I either have rocks in my head or holes in my brain! Either way, after this last test, my overall health, and heart should hopefully all be deemed in good working order.

I will have a recheck of my thyroid at the end of June and will be seeing my oncologist in August; oh the life of a CML patient!

In the meantime, I am going to increase my time on the treadmill from twenty minutes per day, five days a week at 2.3 miles per hour, to thirty minutes per day, five days a week, reaching a record breaking speed of 2.5 miles per hour! I cannot believe how pathetic that is, coming from a person that was used to walking five miles, in the mountains, in less than an hour. Oh well, I guess it is better than nothing!

Living three years with CML has added almost twenty pounds to this bod; so, I am also going to really watch my diet! Something has to give and it has to give soon; I am quickly running out of things to wear in my closet and have actually found myself with a body shape that fits the Costco “Gloria Vanderbilt” pants; I never thought that I would live to see the day! 

Monday, June 2, 2014

CML Summertime Blues

I love summer, I love our garden, I love floating the river, I love having our grandkids in our home and so many other things that summer brings; what I don't love about summer however, is the heat. I have never liked the heat of summer and have always been a bit intolerant of the direct sun and being hot.

Hot for me is anything over 80 degrees in a dry climate, and 75 in a humid one; my intolerance doesn't bode well for the season. Having CML has made me even more intolerant of the heat. During the summer I must keep all of my outdoor activities to either early or late in the day, and remain indoors during the hottest time of the day.

I have found that I sunburn more easily, and quickly become nauseous and get headaches if I am not careful; my eyes also ache while in the sun. In order to make the summer more tolerable, I always wear sunglasses, light clothing, a hat and sunscreen. I also remember to stay hydrated by drinking lots of water (sports drinks are probably a great idea, too) and I have found that bringing a small cooler bag, filled with frozen ice packs, is a lifesaver. I bring them everywhere I go; they are especially helpful when getting into a really hot car. I place them on my chest and the back of my neck until the air-conditioned cools the car. I have also strapped them around my torso with a back brace when I am visiting the Palm Springs or Phoenix areas.

Running cold water over my wrists, when I am extremely hot, also helps; as does a cool shower or bath.
Remember that heat stroke is an extremely real complication, especially for those of us with CML.

The major signs and symptoms of heat stroke include:

               1. Nausea
               2. Vomiting
                3. Fatigue
                4. Weakness
                5. Headache
                6.  Muscle Cramps
                7. Dizziness

Let’s have a great summer while trying to remain as comfortable as possible!

Bricks for the Brave!!