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

Sunday, January 24,2016

Hello everyone and welcome back....

Hope everyone had a pleasant holiday season. Its crazy to think its 2016.

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The gloves above....

As I head into 2016, the gloves are back on.  Two years after my initial diagnosis, I am currently being reevaluated for treatment to begin the next battle.  This will include new medicine and radiation.  My diagnosis means there will always be battles to face.  Those battles occur daily, weekly, and monthly.  Cancer survivors don't just face chemotherapy, or surgery, or radiation.  We also fight the battles of daily pain, and doubt, and fear.  

And, after 15 minutes of that, I put my gloves back on.  I listen to music, and get my mind back in the game.  I use my weapons of humor and education, along with the valued support of family and friends.  Its so important to acknowledge my feelings of weakness, and then match them with the power of strength.  I take pride when people flatter my short hair, or remind me it was just "yesterday," when I dealt with treatment.  I still talk with others and explain how the medicine and science is allowing people to be diagnosed earlier and treated better.  This allows for education, and my message can be shared with others who have questions they are afraid to ask.  This also allows patients to work during treatment.  I face this everyday.

I do my best to do as many "normal" activities as I can.  Whether its go to a party, or meet new friends, or work out, or play ball.   I still take on challenges and I still pay bills.  I continue to find humor in some of the aches and pains, because, what else can I do about it?

I thank everyone for sharing this journey with me.  I am the only one who can walk the path, but I can always find support along the way.  It gets harder all the time, but I am grateful for every distraction, and messages of hope, strength, and courage.

Love, Sosa