Another week, another dilemma. The most recent visit with the Dermatologist resulted in 8 areas being frozen off and one area on the left leg being biopsied. Just received the call from the Dermatologist I was expecting and ready for. The biopsy is again positive. Since the Interferon therapy I have had 4 basal cell carcinomas surgically removed. Basal Cell lesions seem to live very comfortably right along with their big bad brother Melanoma. This one is also basal cell carcinoma. It seems to be one of the "wonderful" side effects of Interferon. Now it is time again to decide whether to have the lesion surgically removed or watch it carefully for any further growth. The biopsy margins were not clear, but I have had 4 surgeries in 8 months and frankly can't even contemplate the thoughts of another.
Although I know that this will be a life long ordeal, the difference between knowing this and accepting this is worlds apart. I have spent the last couple of weeks trying to retrain my mind to think and not anticipate. This is a herculean task. Anxiety tends to walk the same path as the melanoma medical regime. From constant testing and Doctors appointments to the fatigue and worry, even an educated mind can get caught up in the "what ifs".
Dealing with the constant change in body image is a struggle even at my age. The increasingly numerous scars, the changes in body shape due to lymphedema and the inability to exercise all contribute to the multi-faceted complexities of this dreaded disease.
So, the saga will continue and I am grateful for the opportunity to contemplate the saga. I could have easily been on the other end of this dreaded disease named Melanoma with no options and no time. I have been blessed with the option of treatment and hope for a future, never taking for granted my life journey.
Whatever path this saga takes me down, I pray for the strength to cope with dignity and grace through the maze that defines medical technology and the life of a cancer survivor.
Friday, April 25, 2014
Wednesday, April 9, 2014
I have lost a whole month of my life
that I can never retrieve no matter how I try. A month fraught with
worry and levels of anxiety that cannot be described. Try as I
might, no matter how I rationalize and intellectualize the need for
constant follow up testing and that this is now and will be a fact of
life for the remainder of my life, the same extreme worry precedes
the testing and lasts until I see my Oncologist for the results. This
last set of tests ended up provoking and even higher level of anxiety
because of a 2 minute phone call from a secretary at my Oncologist's
office. First and foremost, let me explain the events of the last 2
weeks.
My Oncologists, Dr. Armenio and Dr. Al
Malki ordered a PET scan to be performed as it was 6 months since my
last one. The standard of care for Malignant Melanoma calls for PET
Scans twice a year. The insurance company denied this request.
Because of this denial, the Physicians ordered 2 MRIs, one of the
pelvis and one of the abdomen, both with and without contrast. Being
a migraine sufferer, I had experienced several MRIs over the last 15
years but they were all of the head, not necessitating being placed
full body into the MRI machine. I am not now nor have I ever been
claustrophobic, but for the approximately 3 hours needed to perform
both studies, I had to keep saying my Rosary just to calm myself
enough to complete the studies. Words cannot describe the strength of
will that it took to complete these tests. I have faced each test and
procedure with as much bravery as I could, but I have to admit that
these tests just about put me over the edge. Trying to understand why
this was so difficult, I started to look back over the last 7 months
to find an answer to my anxiety. It occurred to me after realizing
just how much has been done that I was indeed at the end of my rope.
Only after putting it all on paper did I realize just how much this
poor aging body has been through. In 7 months I have had 4 surgeries,
4 MRIs with contrast, a PET scan, 3 ultra sounds because of a DVT
(deep vein thrombosis), treatment for 12 weeks because of this clot,
2 CT scans with contrast, both ingested and IV push, visits with the
medical Oncologist, surgical Oncologist, Dermatologist and my
Internal Medicine every few weeks, blood tests almost every week and
2 months of horrendously toxic chemotherapy with Interferon. Just
re-reading this diatribe gives me shivers and a new sense of wonder
as to what one body can sustain without permanent damage. So, when I
received a telephone call from the secretary at my Oncologist's
office stating that the newest MRI results had been received and
after reviewing them, the Doctor wanted to make sure that I had an
appointment to come to the office to discuss the results.
Being an RN who has been in private
practice for over 32 years, I knew what that meant. It meant there
was something seen in the MRI that needed to be addressed. Little did
I know at the time that both MRIs revealed positive findings. My
follow up appointment with Dr. Armenio was not until a week from this
above mentioned discussion with the secretary. It was the worst week
thus far in this truly amazing medical journey. There were days that
all I could do was go to work and throw myself into the duties of our
very busy practice, then once at home, didn't even have the physical
or mental energy to speak. I didn't share this with my family or my
husband as I didn't want them to suffer with worry like I was. Of
course, they knew by seeing me that there was something terribly
wrong. I vowed to discuss this issue of waiting for over a week for
any test results with Dr. Armenio.
The day of my visit came and the
positive findings were discussed with the need for further testing. I
expressed the absolutely unacceptable waiting time for the results of
these tests and we came to a mutually agreed upon conclusion. If I
couldn't be seen the day after a test was performed, one of the
physicians would call me with the results. I am quite able to take
any news in a phone call, what I can not nor will never do again is
to agonize for over a week over results that could have been given to
me so much sooner. Again, both of my Oncologists requested a PET
Scan to further investigate whether the positive findings were
directly related to the Melanoma. The first request was denied by the
insurance company. The second request, in the form of an appeal of
the first denial was again denied, necessitating a peer to peer
review, which was also denied. This whole process took almost 2
weeks, so my anxiety and apprehension about these findings actually
took on a life of it's own. The only option was to have a CT scan of
the abdomen and CT scan of the pelvis both with and without contrast.
This was booked for the day before I was to again see Dr. Armenio. I
was in a state of torment unlike anything I had ever experienced.
Even when I received the initial diagnosis, my acceptance of this
devastating news was controlled and without angst. Of course, if I
had any idea of what was to transpire in 7 short months, this
probably would not have been the case. So, not only do patients worry
and obsess about tests and their results, but add to that the
struggle with insurance companies to approve the much needed studies,
just makes this whole struggle a psychotic folly. And when you take
into consideration that a PET scan in this area costs about $5,200.00
and the 2 MRIs and the 2 CT scans cost approximately $9, 500.00, it
makes it just that much more unbelievable as to the lack of basic
common sense to have denied the first PET Scan. Not only would I have
been spared the physical torture and the multiple doses of toxic
contrast, it would have saved half of the final cost.
The next day came and my visit with Dr.
Armenio produced the best news I have ever heard. Yes, there were
positive findings, but they were unrelated to the Melanoma and were
not emergent. I took a deep breath for the first time in a month.
After hugging Dr. Armenio, I departed to again return to work. During
this drive as I was praying and thanking God, I realized that if I am
to keep my sanity, I would have to find a way to face the frequent
testing and waiting in a new and more constructive way. I shared with
Dr. Armenio that the Melanoma wouldn't kill me, and he finished the
sentence for me “the anxiety will kill me”. He stated that
although he treats all kinds of cancer, it is only his Melanoma
patients that experience this degree of fear and anxiety.
Contemplating this statement, for me at least, I can understand
exactly why that is. When I was diagnosed, my surgical Oncologist
explained my specific pathology report and the importance of the
mitotic rate. The mitotic rate is the frequency with with the cancer
cells divide and multiply. A mitotic rate of 4 is bad news, my
mitotic rate was 16. Compound that fact with the surgical
Oncologist's need to send a second specimen of the lesion to Sloane
Kettering Hospital in New York because he had never seen a mitotic
rate that high without there being metastasis. All of these facts
have turned a very level headed, even keeled kind of gal like me into
a mushy lump of worry with each new test. I am always waiting for the
next bad news. This must and will change.
It will now be my challenge to find a
way to not only live with this disease but to embrace each new test
as an opportunity to prove each and every time that,with the Grace of
God, I continue to be healthy. The reality of the situation truly
puts new light on the important events and needs of everyday life and
how to prioritize. I look at everyday life with new eyes and a new
awareness of what is important and what is truly not worth a second
thought. And more and more subjects fall into the category of not
worth a second thought.
It is with the good news of NED (no
evidence of disease) that my husband and I decided to celebrate with
a beautiful dinner at a gorgeous local restaurant. We shared our
relief and our shared feelings of blessings for the opportunity to
continue our fairytale romance. We will not give up without a fight,
not ever.
Subscribe to:
Posts (Atom)