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

 

December 19, 2016  Happy Holidays

I continue to write this blog to check in with people from home, or from work, or those who want to know what's going on with me but don't want to ask.  Or maybe, feel they are too busy to check in.  For those of you out there, I hope this finds you well, and you are healthy and safe.

Over the past month, I have turned 40 and been very active.  This includes a uphill hike to a long rainy football game and a trip to Vegas for softball.  My time off from work has allowed me time to recover from daily activities, and save my energy for the larger events in my life.

News:

Part of the clinical trial is repeated blood tests to monitor levels.  As a result of taking this medication, I had two blood transfusions.  I suffer from some symptoms which I can see and feel.  The blood tests identify risks that could risk the performance of the drug and my health.  I did not know how common transfusions were until the past month.  So, thank you to anyone who donates blood on a regular or one time basis.  If I did not have these transfusions, my treatment plan would have to change in a not-so-good way.

There has been a significant change in the amount of tumor factor in my body.  It continued to reduce after my last posting.  My medical staff is impressed with the clinical trial medication and support measures to keep me on it.  This is a pill a day with few side effects.  My everyday symptoms are no different from any other person who has joint or muscle pain.  But I do get tired more often, and its important to sleep when possible.  Sometimes that sleep is broken, and not as good as it could be. 

I am also faced with a change in appetite and diet which has been challenging.  I am encouraged to intake 100 grams of protein a day.  This is best from foods and natural sources.  I take advantage of smoothies and protein powder.  Friends have offered advice on how to get all of the protein, including breaking it up throughout the day. This has been the most difficult adjustment, because I used to enjoy lots of different foods.  I am rarely hungry now, mainly full because protein is very filling.  My stomach doesn't growl anymore and I rarely desire any foods or have cravings.

Life is different, and has been for the past few years.  I am feeling more normal now than I have since the beginning. Which is good, because I intend to live and love as much as possible.

I hope to continue improving my strength and health so I can live life as normally as possible.  I remain realistic and recognize limitations.  That doesn't mean I am limited, just that I have to be smart about how much I do. Or the day off to recover. Luckily, my medical staff encourages me to be active and build muscle.

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Last, I recently returned to support group, but due to continued medical appointments, I have missed the past month.  I return this week and I am grateful for it.  There I can share my feelings about the difficulties of living with cancer. I can also share the good things in my life. I can also listen to others with different kinds of cancers and treatment struggles.  This is a good place to get a better perspective on how others deal with cancer and how it changes lives. I highly recommend a support group for cancer patients and groups for caregivers, parents, and children of cancer patients.

At this group, I can talk about the loss of our friend Jody.  She was my age, and the mother of two small children.  Jody was diagnosed with pancreatic cancer, and battled treatment for two years.  She was a kind soul and looked great in her wigs.  I spent Mothers Day 2015 with her at the Giants ballpark, and ran into her husband at a rainy football game last year.  She was in regular treatment after her diagnosis, and made the choice to stop treatment.  Her family has always been incredibly supportive and I know her children will be cared for. 

You are missed, my friend.

Love, Sosa

November 13, 2016

Well, tomorrow is my 40th birthday.  I will be half my father's age.
And thanks to his genes, I do not look it.

Birthdays come and go, and some people take lots of pride in the event.  Bone marrow transplant patients get two birthdays.  Some people get a birthday month or a birthday week.  However it is celebrated, I hope people are there to appreciate the event.

Part of my birthday has always been meeting with my parents and taking advantage of birthday freebies.  I highly recommend joining e-mail lists for places you go often.  Tomorrow, I will go shopping, visit with friends, and make one of my friends buy me lunch.

I will also celebrate this year with multiple blood draws over two days.  That is how a clinical trial works. Constant maintenance of how my body is responding to the developing medication.  As a friend often says, so is life.
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News: 

I began a clinical trial in September. My symptoms at that time included pain and stress associated with extreme swelling and lymphedema on my left side. My tumors had multiplied and increased in size. I had gained 30 pounds or more in heavy fluid.  This lymph fluid is not like blood or light swelling.  This is thick fluid that was filling my extremity. My body could not process the fluid because of tumors in my lymph system.

The clinical trial medication is a pill that I still take once a day.  Over the next 3 weeks, I lost 30 pounds of fluid.  This is a significant result for me, and for the clinical trial.  My side effects included fatigue and nausea, which were not fun.  However, there was no infusion in my chest, and I did not lose my hair. 

As the next month progressed, my pain levels subsided.  I was no longer taking high doses of morphine and Norco.  The swelling was visibly resolving.  I could move better and sleep better.

My doctor supports a comfortable active lifestyle. No matter how good I feel, I must be reminded that the time I have to be off of work is to observe the results of the clinical trial medication.  Yes, it worked for me immediately.  My tumor load went down by one third.  That is big.  But, it is important to wait and watch, if the medication starts to plateau or lose momentum.  Should the side effects be worse, or should the results change, then I would have to begin another type of chemotherapy. 

So, during this time, I monitor side effects like nausea and pain, but also have very low white blood cell counts.  I have to be aware of my environment but more aware of what goes into my body.  I am adjusting to different food cravings, and eating less.  Not to mention no alcohol for awhile.  Low white blood cells mean I can be at greater risk for infections, some of which I have already dealt with.  Flu like symptoms are much more difficult when your body is weak from treatment or cancer itself.  I already experienced two rough weeks of being more sick than usual.  I now have a longer recovery process.  That's a change from before.

So, just like two years ago, I am building strength through exercise and activity.  I continue to research my treatment options.  I play softball and exercise often to build strength in large muscles.  This will then increase my ability to make white blood cells, and remain strong in the fight.  I am trying to have a better diet plan, as opposed to just not eating at all.

A friend recently reminded me, "Don't judge a book by its cover." 
I do not look like I have cancer.  But I did for awhile two years ago, when I lost my hair.  And when I was dealing with symptoms over the past year. 
I do whatever is good for my soul, and that is what I want people to see.  Maybe its travel or playing softball, or going out with friends. 

I cannot stress how important perspective is for those in treatment and their caregivers.  The patient is the only one who can decide how to live life with cancer.  You can hide in a closet and let stress fuel the disease.  Or be overemotional and exhausted, which may be unusual for someone who was once independent and logical.  Or deny the whole experience, and stubbornly ignore what could save your life or the lives of loved ones. Maybe meeting someone who sees the disease differently will allow the patient to face the cancer in a better, healthier way.

My perspective is based on heredity, life experience, and education.  In an oddly morbid way, I was fortunate to be diagnosed metastatic.  I never have to worry about my cancer coming back.  I will always have active disease.  So I am prepared for that.  But I am not contagious, and some people will never know that this is what I deal with. And everyone deals with something that no one will ever know about.

Also, with the support of others , I realize I am not alone.  I try to share my perspective, through this blog, not because I am a positive person, but because I see it work.  I see the world differently because of my cancer.  I make it through every day because of the science and the support of others.  I will keep going, until I cannot.  Maybe just a bit slower than before.

Thank you for reading and checking in.  I appreciate feedback and will answer questions, or speak with anyone who needs support.

Love, Sosa

September 25, 2016

Above is a photo from Women's Softball playoffs at Willow Pass Park in Concord. 

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Hello all,

Thank you for returning to the blog for new entries.  It has been a few months since I have checked in with updates.  Mostly because, I did not have much to share regarding treatment. 

Over that time, I continued to work full time, and for local adult and little leagues.  I traveled and met new friends. I played softball twice a week and enjoyed meeting some great teammates. 

Over those months, I was in good physical shape and dealt with manageable side effects of joint pain and swelling in my arms and chest. Part of living with Advanced Cancer is dealing with physical side effects daily.

And part of living with Advanced Cancer is accepting every day as it comes, because the emotional side effects are just as difficult.  A pill or exercise doesn't always treat those feelings of doubt or fear. 

What does help is support from others. Over the past few years, I have met many friends of friends with new cancer diagnoses.  Every time I have been approached, I have shared my story, and the importance of support from the community.  Having support from all parts of the work, family, and friend worlds is significant to survival of the disease and survival of treatment. 

More people live longer because of treatment, like myself, but I cannot acknowledge enough how support makes treatment easier.  It is as easy as a regular date night, or lunches, or texts, or games played on a phone.  I was fortunate to play softball with other women who are breast cancer survivors.  More intensively, its a regular cancer support group with other patients.  Its talking with survivors about the one incredible, unbelievable thing we have in common. 

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News:

As of September 1, I chose to take off work indefinitely to battle this cancer on a bigger level.  As my summer ended, my symptoms increased.  I went through the "fun" experience of multiple MRIs and CTs and blood draws.  There is medicine available now, that was not developed when I was first diagnosed.  There are clinical trials available that will allow me to treat my cancer and help people in the future who are diagnosed.

If you know me at all, making this decision was hard. Just like a few years ago, my diagnosis changed my life and the lives of others. And like then, I did not want to change from a very busy lifestyle and being very active.  I did not want people to think I am dying or in a hospital somewhere.

I am not dying. Not today.

I have incurable, advanced, terrible breast cancer, and treatment has allowed me to live as normal as possible for two years.  Now, its time to focus on that treatment again, so I can have more time to do the things I love, like travel and live life. That means chemotherapy in some form, and more pain medication.  My goal is to allow my symptoms to subside and the cancer to reduce greatly.

I hope those who read this share it with others who are looking for support from another young person with cancer.  But, I most hope those who read this are friends who trust I am making the best decisions. I am trying to return to a regular active physical and social life, and eventually, working full time.

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I am placing an order for Team Sosa shirts first thing Monday morning, and the remainder of the proceeds will be donated.  October will be here soon, and I hope pink means more to you as it does to me.

Love, Sosa

March 13, 2016

Hello Everyone....

Above is an illustration of the machines used for Radiation Therapy.  This week ends six weeks of radiation treatment to my lymph nodes. It is hoped this treatment will alleviate some symptoms of swelling and numbness.  Lymphedema is a side effect of cancer treatment and/or surgery.  I will be evaluated in another month to see how it worked. 

Radiation therapy has improved in the past 20 years. Past patients were treated daily with larger doses in broader areas.  Machines, like the one above, are further desiged to target the cancer.  Over 6 weeks, more or less, the actual treatment takes five minutes each day.  It takes longer to get set up.  Its more like an xray where the patient only hears sound.  The procedure itself is painless.

Side effects of radiation include fatigue and burns.  My burn developed about 3 weeks in and is in my armpit.  Its pretty gnarly, and looks like raw skin healing.  Its very similar to a severe sunburn.  I use an adhesive silver patch to keep it clean, and healing during my regular day. 

I appreciate the technologists and medical staff who provide this service.  They are constantly available to offer advice and observe the development of the burn at the treatment site. 

I am very fortunate that I have medical care and insurance to provide me low cost treatment. I can only contribute donations to organizations and fundraisers to support free services or treatment to those recently diagnosed. It is very important to provide help in any way for those who face a cancer diagnosis with family and friends. 

Don't forget to participate in Relay for Life and Avon 39 or similar fundraisers this year.  Encourage education and awareness.  If you know someone who is diagnosed with breast cancer, I am available for support.  I cannot stress how beneficial it is to dealing with the cancer diagnosis. 

And Get Checked!

Love, Sosa