September 5, 2017

Hello there,

I last wrote in April so here are the updates.

I started Doxil, and made it through three cycles before it became to difficult to manage side effects.   My breast and arm swelling became too much and a CT scan showed more growth.  My tumor marker was drastically higher than it had been in a very long time.  Which means, my disease found a way and went with it.  The tumor growth was quick and efficient in a few months time, and it now invades my chest and back and skin.

This is the nature of the cancer beast.  I won't be gentle with others in describing the devastation of the disease.  More than a few of you have watched cancer devour and kill family and friends.  I live with the disease that is eager to take me to that hospital bed. 

Other than my lymphedema sleeve, my cancer is not too visible to most people.  I may walk a little slower because of stiff joints, but look normal otherwise.  But it can take me a little longer to prepare for the day.  Similar to anyone with a chronic condition, I have specific clothing needs and take extra time to get ready. 

A few months ago, I began another chemotherapy regimen, called Xeloda.   This is in pill form and common for treatment in pancreatic and ovarian cancer patients.  I was alright for the first week before I suffered severe side effects that were not at all easy to manage.  This included hand and foot syndrome, where my left hand and fingers swelled severely.  This is blistering and painful and I had no use of my left hand.  My feet started to hurt and blisters formed under my toes. 

The worst of the pain occurred during my last week of summer softball.  In fact, I was not sure if I could play.  But, once I laced up my shoes, and took some medication, I made it through two very competitive games.  If I was not motivated by my teammates or love for the game, I would not have made it to the fields.  But my teammates wear TEAM SOSA on their jerseys; so I was not letting them down.

The following week, I ended my chemo cycle early due to pain.  I used a cane to walk and I asked for help from friends.  I rested and tried not to pull on blistered skin. It was a very rough week.  However, within a few days, the swelling in my left arm quickly reduced, and so did the hand swelling.  I lost about 25 pounds in fluid, and I earned every bit of it. The pharmacists changed the dose, and I have completed 2 more cycles without the previous side effects.

Another new development in my cancer is in my skin.  Along the lymph node channels in my shoulder, side, and back, have developed bruising and hard nodes.  This is where my body is encapsulating the disease and working to keep it from spreading elsewhere.  The worst of it is on my chest, and has resulted in wounds similar to radiation burns.  There is a lot of discoloration and bumps and ugly wounds to bandage.  I have learned how expensive bandages can be, and how quickly the disease can progress. I now hesitate to wear V-neck shirts or tank tops.
____________________________

Its okay for people to notice when it looks harder, and its okay for people to acknowledge when I am looking better. When a cancer patient loses weight, its only bad, if it looks bad.  My weight loss has improved my self esteem and physical abilities.  I earned my weight loss, and I continue to exercise to build strength that I have lost.

During my time off, I have been fortunate to continue in my support group and make friends through the Cancer Support Community.  I have been lucky to been connected with others who have been diagnosed, and offer help as much as possible.  In contrast, I have also participated in activities like softball, which allow me to forget about the disease, at least for a little while.

Tomorrow, I return to work for the first time in a year.  I have struggled with feeling unproductive and bored, which can lead to feeling bad and somewhat depressed.  I stay active to maintain energy levels and socialization. I appreciate all of my coworkers and friends who have shared lunches and invited me to outings, so I am not forgotten.

I hope I can manage my pain and side effects while at work.  I hope I can maintain control when I get easily irritated, which did not happen as much before.  My job has made it easy for me to return, and I am very close to my 20 year award. With that goal met, I will be in a place to retire when I need more difficult treatment or surgery.

My group facilitator, Ron, said it best when I announced I was returning to work.  He said, realistically, "Goodbye, for now."  Last year, I returned to his group for a second time, and because of my disease, I will eventually return to more challenging treatment, which means more time off, or retirement from work. Knowing the support group is there for me, will make any further treatment much easier.

_______________________

Finally, I will participate in the Susan G. Komen Race for the Cure in Fresno on October 1.  I have included the website address so you can contribute to my $500 goal.  I would like readers to contribute $5 each and I can meet my goal.  I will also accept donations in person. Email me if you have any problems.

Copy and paste the link below into your browser, and you will be directed to my donation page.  Scroll down the page to see my name and read my story.

http://bit.ly/2wE9GI3  (do not click on this link; you must copy into browser)

This year, I will also place orders for the black TEAM SOSA t-shirts and v-necks, as well as temporary tattoos and lanyards.  Remaining proceeds go to the Cancer Support Community.

I always appreciate any support offered by friends and family. No survivor makes it alone.

Thank you,
Sosa