October 23, 2017

Hello all,

This is just a brief update to let you know what's been happening with me.

I returned to work and scorekeeping, both activities that help me feel useful and contributing to the world around me.  Our annual softball tournament went off without a hitch and everyone had a good time.  I was struggling, but I completed the Komen 5k and my friends dragged me along.  My feet hurt lots the following week, of course.  We finished in the top 10 for contributions for the event.  Thank you all for helping out.

Soon after I went back to work, my doctor scheduled me for radiation treatment.  My left arm began to swell again which causes me great discomfort.  This process is similar to what I did in the past.  I lay on a machine and a larger machine rotates around me.  This time, I am positioned in 3 different ways, most of which are very painful and taxing on strained muscles.  It lasts around 30 minutes, but it takes some time to set up.  The staff are very understanding and help with everything from ice packs to bandages.  Radiation is M-F and I take oral chemo those days.  My last radiation day is scheduled for 11/8.

Chemo and radiation is cumulative, and the weight of both treatments is very exhausting.  I have called on friends to help me with laundry and shopping, as well as my parents to help me with my dog.  The next three weeks will be increasingly difficult but I have freed my schedule to get more rest.  I am not playing softball now, because my energy level is very low and walking is a struggle.

But I will be out there to watch and support as much as I can. 

Over this October, the fires that destroyed a lot of the Napa Sonoma area took a lot of our contributions.  You are increasing awareness just by wearing a shirt or carrying a bag or answering questions about breast cancer treatment, survivors, or caregivers. 

Last, my situation is placed in perspective daily, as three of my friends had surgery recently.  Recovery times are different for everyone, but I reach out with the only support I can offer, because I know how important it is. 

I hope everyone has a good holiday season.  It will be here before you know it.  Be grateful you have people in your corner.  You never know when you need them.

Love, Sosa



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.
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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.

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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

April 20, 2017

Hello all,

It has been a few months since I last checked in, so I am taking this opportunity to update my community on both good and bad news.  Thank you again for checking in and asking how I am doing.  I always appreciate any emails, texts, or phone calls, as well as visits and lunches.

The past few months were filled with travel and exercise. As part of the clinical trial, I worked hard to maintain a very high protein diet, and encouraged to remain very active. I struggled with the clinical trial mostly because of low blood counts.  I had a few more blood transfusions in order to continue to receive the medicine.

Finally, a few weeks ago, the trial dropped me.  My cancer had continued to grow, despite efforts to remain on the medicine.  And, last week, a CT scan revealed a new large tumor mass growing in my upper chest.  It is not in any organs, and is outside the rib cage. 

Remember, this is the devastating nature of cancer and metastatic disease.  My cancer will never be in remission, and I will always have active disease. For the past 8 months, I have participated in a clinical trial which has reduced my cancer and provided my a very good quality of life.  With every different approach, my cancer has reduced for awhile, then kicked back in to gear. This time, it only took about a month for the cancer to finally outsmart the clinical trial medicine.  Once it did, the new tumor began to grow.  And because of my ongoing lymphedema, the swelling in my arms, chest and back, has become very uncomfortable.  I still don't have as much range in motion, but that is nothing new.

So, this means more chemotherapy.  It has to be aggressive new treatment, which is a different type of chemo.  By attacking the disease with another type of chemotherapy, I hope to outsmart it for a longer period of time.  Every time I change medicines, I am working to outsmart the cancer which is working hard to kill me.  Like, working really hard.  

As soon as this chemo works, I hope to improve my quality of life.  I have been suffering with pain, swelling, lack of appetite, nausea, sleeplessness, and exhaustion.  I am looking forward to returning to work and playing softball.  When this medicine works, then I can function normally.  This chemo has some side effects, but not like the first chemo.  No hair loss, or neuropathy.  These are signs of how medicine continues to develop and improve the patient's quality of life.  

I am writing this from the hospital, where I have already received my new chemo, called Doxil, and have finished 1 of 2 units of blood.  I should feel better by tomorrow, and hopefully my tumors will start shrinking right away.

These last few weeks have been more difficult, but I intend to return to a normal lifestyle.  I miss doing the things I enjoy, but that will come soon enough. 

Thank you again for the support. I am also here for others should you meet someone who would benefit from a conversation with me about cancer treatment.  I can also refer anyone to the FREE services at the Cancer Support Community where I still attend support group.

Last, it seems diagnosis and death have been more prevalent in the past few months.  I have had to grieve for more people lost to cancer.  And I have had to grieve for those newly diagnosed.  Maybe its because I am a survivor, but it has never been easy to understand how the disease behaves or selects who it does. Always keep those people in your prayers.

Love, Sosa