Finally, An Answer



Granddaughter Caitlin Graduates



                Finally, An Answer

After months of testing, questioning, and frustration, I believe I have an
answer for what has caused my extreme weakness and fatigue.  The first symptoms appeared last September and were mild and occasional.  In December they became more pronounced, and by February I could walk only a short distance without needing to sit and rest.

At present I use a wheelchair to shop or attend medical appointments, and even walking around the house is exhausting.  My arms and legs feel heavy and achy. The crazy thing is once I sit and rest I recover completely, and feel pretty good.  Doctors have not identified any single cause, telling me I am "unique."  Well, that isn't helpful!

It was one of my North Star nurses who was so bugged by my symptoms that she researched and suggested it may be Paraneoplastic Syndrome.  In talking with my doctors here and my medical team at NIH, they now are in agreement that this is probably the cause.

There really isn't much info available, as the syndrome is pretty rare.  Basically the cancer tumors trick the body's immune system into fighting the body instead of the cancer.  There are many possible ways the syndrome presents, and some effects are more extreme than I experience.

The only "cure" is to treat the cancer; in my case of renal cell carcinoma, there is no cure, just the possibility of stabilizing tumor growth.  So I'm working on that.  I'm on an increased dose of Votrient, and in about five weeks I will undergo a PET/CT scan again to determine whether the medicine is working.

In the meantime, I go about my activities in an abbreviated way, as my energy is so low.  I'm working on eating well, although nausea and loss of appetite are a problem.  We did buy a used motorized wheel chair, but as yet haven't purchased a lift to take it with us.  It is great for visiting my neighbors, though, and a portable wheel chair is handy for short trips.

The most difficult part is wanting to do things for myself and being unable to.  It's really tough for this independent girl to become reliant on Frank and friends for so many things.  Frank has been so patient and hard working, doing all the cooking, grocery shopping, etc., as well as other tasks large and small.  And my friends have been amazing, doing all kinds of tasks that I can't do for myself, as well as giving me reasons to smile and laugh daily.

Life is very full!  Eric was here for a long weekend for Caitlin's graduation, and we all had a great time.  We are looking forward to a trip to Kona in August with all the family.  Looking ahead!

April Update

I've been home from the hospital for a month now, and my days have been filled with medical appointents of every kind.  Fortunately, there has been time for good visits with friends and my family as well.

 Still trying to figure out why I am so exhausted and unable to walk very far.  That part actually seems worse than a couple of months ago.  It is frustrating, as I've always been one to accomplish a lot, walk quickly, and take care of my own needs.  I think that is the hardest for me--having to rely on Frank and others to do the smallest tasks.

CT and PET scans taken in early April show my cancer has spread some throughout the abdomen, spine, and small nodules in one lung.  However, it hasn't advanced as quickly as I feared it would, so that's really good news.

In several aspects things are looking positive.  I'm no longer as anemic as I had been for several months.  My lone kidney continues to function well.  I've started on a cancer-targeting drug, Votrient, that has a fair success rate for advanced renal cell carcinoma.  Side effects are mostly with the digestive system, as well as more fatigue.  My blood clot, or deep vein thrombosis, is being treated with anticoagulants, and the leg swelling is completely gone. 

I also had my first day of radiation on my spine today.  While my type of cancer doesn't respond to radiation, it can destroy the cells that have invaded the bone.  We are hoping that after 15 days or so of radiation my back pain will be lessened.

Thank you to several friends who did some research and on the issue of medical marijuana.  One friend brought some product for me to try, and it does seem to work on the pain.  Today I saw my primary care doctor, who has prescribed medical marijuana pills for me.  So that is one more hoop navigated.  Hoping it will also help improve my appetite. 

I've been remembering my dear friend, Dyane Hurson, who passed away this week while traveling in Arizona.  Such a fun, compassionate, and upbeat person.  Just another reminder that life is filled with unexpected twists and turns, and nwe never know what it will bring--or take away.  Hug those you love frequently, dear friends.                    ~ Gayle

My Latest News

This latest trip to the National Institutes of Health in Bethesda didn't bring the news I'd hoped for.  Because of the weakness and shortness of breath I've had for a few months, I was taken off the cancer meds December in hopes of determining the cause of my symptoms.

I went to NIH last month and underwent many tests to identify the problem, but nothing turned up as a definitive cause.  Had a couple more tests this week, as well as my regular CT and PET scans.  Unfortunately they show that the cancer has progressed, with new tumors and growth of the old ones.  It was obvious I am worse, as I couldn't travel through the clinic without the use of a wheelchair and an assistant.  The fatigue in my legs as well as the difficulty breathing and pounding pulse stop me in my tracks.

The doctors' conclusion is that the drugs have had a negative effect on my body, interfering with muscle control.  Either that or the cancer itself is sending out chemicals attacking my body.  Nasty, sneaky, hateful stuff!

At any rate, I am not continuing on the trial.  They may try steroids for awhile to help perk me up, and then start on another drug that is sometimes effective in kidney cancer.  Also, there will be a trial of a new drug starting in April, and I may qualify for that.

I'm hopeful that we will be able to get the cancer in check soon.  Frank and I still plan to go to St. Augustine, Florida, for 10 days in March, and I'm hopeful that Caitlin and I can go on our "Senior Cruise" in the Mediterranean in June following her high school graduation.  No, it's not a Carnival Cruise! 

I can't walk much, so shopping and hiking are out, but I CAN read books and sew quilts, so I plan to do a lot of both!  And visit with good friends. Planning on that, too.

I'll do an update when I know more.

Love,
Gayle

It's Been a Long Week!



National Institutes of Health
Bethesda, Maryland

This is the place I normally visit every 2-3 months, and I've been going there since 2009.  I'm in a study for HLRCC, and have had excellent care from skilled medical teams.  I have participated in a trial to control my cancer tumors since 2011, and despite some side effects from the medications, my cancer has remained stable. The trial uses both Avastan and Tarceva--yes, I'm an Avatar!

When I began developing shortness of breath and extreme fatigue in December, my medical team took me off the medications to allow my body to recover.  Six weeks later, however, these symptoms continue.  I spent this past week at NIH being thoroughly examined. 

Because HLRCC is extremely rare, any symptoms or changes are studied very closely so this research facility can learn.  I sometimes feel like a guinea pig--or maybe a test dummy!

I'm on a first name basis with many technicians, nurses, doctors, and the facility travel agency. Cries of "You back again, Miss Gayle?" greet me as I enter the nuclear testing area or hematology areas. What a United Nations of wonderful people work at this awesome facility! I know the names of their children, in some cases!


After four days of many tests, my doctors are still puzzled!  I had CT scans, specialized lung scans, heart scans, stress tests, endocrine tests, and blood work.  Two kinds of echocardiograms, two types of treadmill tests, pulmonary function tests, and doppler scans of my veins. My determined Urology doctors brought in teams of pulmonologists, neurologists, and cardiologists to interview and examine me.  No, I don't keep chickens.  No, I don't take steroids.  No, I don't have trouble sleeping.  Seems I'm the talk of NIH!

Though they don't know the cause of my current problems, they were able to rule out a number of biggies:  My lungs and heart are good.  I don't have Addison's Disease, nor myasthenia gravis.  Doesn't seem to be ALS or any other disease they've explored.  They determined it's safe for me to fly on planes.  Which is good, because I was eager to get home. 

But having no explanation for my symptoms is frustrating.  I am a person used to striding briskly as I shop, walk, and travel.  But now walking through the huge facility, or from my car to the grocery store, or shopping with friends require me to stop and rest, huffing and puffing, after mere yards.  I needed a wheelchair to get through the airports.  My legs are like rubber.

My dear doctor called me as I was waiting for my plane in D.C.  He assured me he will spend the weekend calling on friends and colleagues to explore more possibilities, and we will be in touch next week.  The next step is to see a G.I. doctor to explore some possibilities in that area.  Oh, fun.

I'm not a worrier, so I just have faith that we will get to the bottom of this.  I am most eager to get back on my cancer drugs and continue that battle!


Meanwhile, I'm so thankful for my many blessings:  The dedication of so many medical professionals, the love of family and friends who keep me laughing and offer support, my own comfortable bed, my wonderful loving husband, and SO much more! 

Looking forward to basketball games this weekend for both granddaughters and planning a trip to Florida in March.  Frank says the warm weather will be good for my health!  Can't argue with that!

Love,
Gayle