In December of 2014 I was diagnosed with recurrent, stage 4 breast cancer which expressed itself in my lymph nodes and on my spine. I think of it as "my new best friend" with tongue in cheek. It has some qualities one would want in a best friend. It is likely to be with me until the end. In fact, it will fight with conviction to overcome anything that tries to destroy our relationship.
On the downside, the relationship between the cancer cell and the host is akin to a parasitic bond. The cancer cell has no concern about its detrimental aftermath. It is only concerned with its own survival. Unfortunately, I have had some "friends" in my life (fortunately not many) who were a bit like this.
Anyway, Oncologists do not use the term "cure" when treating stage 4 disease.
At the time of my diagnosis, I chose to reach out to friends and family for support via e-mail.
My first e mail was written in January 2015:
I hope that this finds you recuperated from the bustle of the holidays and ready to embrace 2015. I am reaching out to you to ask for your support as I take on breast cancer, round 2. I started treatment on Monday.
Don noticed a good-sized lump above my left clavicle in mid-November. At his prompting, I saw my primary care doc and he ordered an ultrasound. The results indicated that there were several enlarged lymph nodes in that area and by appearance they were consistent with malignancy.
Next step – surgical oncologist for a biopsy. The pathology report indicated that the cancerous cells have the same characteristics as those that were identified when I was diagnosed with breast cancer in 2005. Several scans later I was diagnosed with recurrent breast cancer, Stage 4. It manifests in my left axillary and supra-clavicular lymph nodes as well as in my cervical spine. Thankfully there were no positive findings in my lungs, brain or abdominal organs. My oncologist tells me, “There is treatment for this disease but no cure.”
I have been entered in a double blind clinical trial with the possibility of three medications in the arsenal. I am for sure on an estrogen receptor blocker. The other two medications - one that lowers the amount of estrogen in my system and the other that blocks a protein in cells that would normally promote cell growth and division - may be placebos or actual medications. All of these meds are FDA approved but heretofore have not been studied when administered concomitantly – hence the clinical trial. The goal of the treatment is to slow the growth and spread of cancer cells (duh!). I will have scans every 3 months to assess its effectiveness.
If I have kept your attention this far, you have no doubt realized that making an intellectual exercise out of a threatening situation is one of my coping mechanisms - it also keeps my mind occupied. This time around is more difficult for me because the treatment is a “best guess” and the outcome is unknown. My inability to control any of this really messes with my need to do just that - no surprise there.
Erin, Caitlin, Don and I have ridden an emotional roller coaster over the past six weeks. They have stuck with me no matter how crazy the ride. Each of them is a great source of strength and they tolerate me at my lowest of lows which is never pretty - no surprise there either.
I have been blessed with many good friends and a loving and large family circle.
Please keep me in mind and send your positive energy and prayers my way as I navigate this new challenge.
My second correspondence was sent out early in April 2015:
I have received updates on my treatment. At the end of three months following the prescribed regimen, I had a bone scan and a CT of the chest, abdomen and pelvis the week before last to assess the effectiveness of the clinical trial against my cancer.
The CT revealed that while there are no new nodes seen, the affected lymph nodes have increased in size. Additionally, there are two new spots of metastasis on my thoracic spine. I cannot say that I was totally surprised. I did not have a good feeling going in, but I thought that might have been a protective posture – to prepare myself for less than desirable news.
My Oncologist had done her homework before I arrived. I have been pulled from the clinical trial. When she broke the trial code she found out that I was taking one medication, Faslodex. The theory was that since my first breast cancer was estrogen positive as this one is, and the first responded well to anti hormone treatment, it was likely that this one would as well. It was a good place to begin, however the cancer is no longer responding to hormone treatment.
I will start a new (as in recently FDA approved) chemotherapeutic agent named Xeloda later this week. It is an oral med which is good. I will take it for seven days, hold for seven days and repeat. If it works and the side effects do not prove to be too toxic, I will be on it long-term or as long as it is effective.My Oncologist tells me that she has a patient who has been on it with success for 3.5 years – fingers crossed!
I spent Easter weekend in Las Vegas with some of my loving family there. Seeing my 99 year old Mom so happy to be surrounded by those she loves was a great antidote to counter my angst over the less than favorable news.
I sincerely appreciate the kindness all of you have extended to me. I am blessed to have a beyond wonderful, supportive group of family and friends.
Do keep me in your prayers and keep your positive energy coming my way.
________________________________________________________________________
July 20, 2015 - I have decided to switch my communication to blog format to avoid filling your in-box with lengthy e-mails, so here we go ...
At the end of last month I had a CT of the chest, abdomen and pelvis as well as an oral contrast CT the neck and axilla. My most recent scans indicate that the Xeloda (chemo) is working. The effected lymph nodes have decreased markedly in size. The spine areas of cancer have actually enlarged some with sclerotic (scar) tissue. Dr. Y describes this event as an indication of healing as opposed to cancer growth. This is all good news.
The Xeloda is toxic. In May Dr.Y reduced the dose from 4000 mg to 3500 daily. This month I started taking 3000 mg daily - still 7 days on and 7 days off. Ever the balance between therapeutic dosing and toxicity. I'm also still on X-geva - don't love it much either but it is there to protect my bones. That's it - the medications are a mixed blessing. They come with unpleasant side effects and they buy me precious time that I am able to spend with my friends and family.
I have gone to part time status at work and that has been helpful. My energy level is low as my friend competes for dominance. No 90 mile an hour pace for now. I am, however, grateful to be working. I love interacting with the students.Their youth and exuberance improves my perspective. I am able to share my age and wisdom making this a symbiotic, and therefore a more healthy relationship.
I am working on my bucket list with an Alaskan Cruise planned for next month; celebrating my Mom's 100th birthday in November; and a crossing of the Sea of Cortez on Don's boat before the end of the year.
You are all in my thoughts and prayers. Please continue to keep me in yours.
Love,
Kathy
Love,
Kathy
