a mutual friend sent Shelly my way, so THANKFUL for Mr. Lynch!

  —– Original Message —– 
Sent: Tuesday, January 17, 2006 11:55 PM
Subject: Lynch friend emailing to say hello

Hi Lisa,

My name is Shelly. My family and I have been friends with the Lynch family ever since I was a baby. Bob just emailed me the other evening telling me about your health challenge since I too had a sarcoma in 1988. He asked me to be in touch with you. Mine was a mixolipoid sarcoma lodged in my vastis lateralis (one of the four quadriceps) of  the left thigh. It sounds like you are facing something very similar. I recall it as if it were yesterday just how afraid I was facing such daunting news. I could not believe what I was hearing the doctor say to me that day he told me the horrible news.

I’m not sure where you live, what sort of treatment you are undergoing and where you are currently with the process, but I wanted you to know that there are folks out there who have undergone it  and are still alive and kicking, happier than ever. I know that I’m very lucky to have kept as much of my leg as I did after having chemo, radiation and surgery all within 3 months time. At that time the doc told me that 10 years prior to my illness, amputation would have been the only treatment. My reason for telling you this is that the breakthroughs in cancer treatment are so enormous every day that what seems like the end of the world may be just a large detour on life’s journey.

I certainly don’t mean to trivialize it, but please get yourself a copy of Dr. Bernie Siegel’s “Love Medicine and Miracles” and keep going.  Be positive, get out and be with friends and loved ones, do the things you love to do, rent funny movies, and believe that all will be well. Your soul is strong and your mind’s capacity to heal is greater than any of us even realize. I wish you the very best Lisa as you face some tough times. Though the road will be bumpy from time to time, hang on. Please feel free to email me with questions or thoughts if you’d like. May God be with you. Someone who understands the feelings, the unanswerable questions, and the fears.

Shelly

********************

My Response to Shelly …
Date: Saturday, January 21, 2006 9:09 PM

Hi Shelly,

I do appreciate your support. When this all started with the possibility of cancer, Mr. Lynch called me personally to tell me about YOU. He is such a caring and wonderful person. Gosh, I don’t know where to start. WE definitely know now it is a sarcoma in the right thigh.  I do not know yet what kind.  The first biopsy was benign but the second proved otherwise.  I had a liver biopsy yesterday as I have lesions that needed to be checked.  The Dr’s indicated they do not think they are cancer cells but wanted to rule out the possibility before moving forward.  I am under the care of three Dr’s @ Johns Hopkins Medical Center.  The PLAN (if the Liver Biopsy is negative) is an AGGRESSIVE Chemo/Radiation combination, surgery (to remove the tumor) and possible radiation “post surgery”.  This is in a 4 month period.

I have had some exposure to radiation as my Dad took it for prostate cancer.  I also had some exposure to chemo as my brother Don took it when he had bladder cancer. He died just last April. So this is all very FRESH for me. Up until this point, I have rolled with each day just doing what I need to do. I have not been afraid about taking chemo or radiation because of what I already knew. The hard part is when I was being told I had cancer. That’s tough to describe to anyone.

I think this week the reality really set in. On Thursday, I woke up crying, scared and filled with fear. Then Friday on my way to the hospital, I felt like throwing up as my stomach was so nervous. This morning I was nervous again but it has now passed. I really appreciate the support and will continue to keep you posted. Thanks for allowing me to write to share this emotional experience. I will be writing again. Thank YOU … Lisa

The “marks” on my liver were of great concern to the Dr’s.  Even though they didn’t think they were cancer, they wanted to be sure.  Immediately following the radiation simulation, I was scheduled for a liver biopsy.  This was probably one of the most difficult procedures I had done.

There were about 7 people in the room.  Three from the lab w/microscopes in hand, an anesthesiologist & 3 other medical types … 2 to perform the procedure & 1 to hold my hand.  I was given anesthesia locally.  They told me if all was well, I would feel pressure.  If all was not well, I would feel pain & they would know I needed more anesthesia.  They told me when to breathe, how to breathe & when to hold my breath.  I layed on my left side & they accessed my liver thru the ribs while monitoring the process via ultrasound.  The breathing part is so important cause they don’t want to puncture the lungs.  On the first pass, I wanted to jump off the table … obviously, I didn’t have enough anesthesia & the pain was BRUTAL.  They asked if I was sure it was pain … I don’t think pressure would cause tears to flow!  Once they got the anesthesia right, they were able to finish.  I would not wish this test on anyone & I pray my liver stays as is … I don’t want to go thru this again!

The marks on my liver turned out to be HEMANGIOMAS (clusters of blood vessels) & not cancer!  After getting the results of this test, it was determined the cancer was exclusive to my thigh, thank GOD!

Before any treatment could be started, I had a radiation simulation appt.  This is where they measure my thigh/hips & make a mold to position me the same way for every radiation treatment.  The angels of the beam, how many, how much was determined at this appt.  Highly technical for ME but none the less, needed to be done.  I was scared because I didn’t know what to expect.

Kind of silly, looking back.  Quite painless & the tech called me by name, even though I had not met her.  Dr. Frassica had called her to discuss my case & she was aware I was on the list for the day.  The tech used to work for Dr. Frassica at JH Green Spring.  Small world.  They had the measurements needed, took what looked like a garbage bag & activated it.  Basically, by pounding the bag, the ingredients inside became liquid & the bag was molded to my thigh/hips.  Measurements were done & positioning was accomplished before the mold hardened.  Very easy in the scheme of things!

Dr. Debra Frassica explained the treatment plan as such:  a week in the hospital for chemotherapy.  (The intent is to kill any cancer cells which may have spread but do not necessarily appear on any test.)  Then 2 weeks of radiation.  (Which would focus on the tumor & area around it.)  Then I would go back in the hospital for another week of chemo; then another 2 weeks of radiation; and then another week of chemo in the hospital.  Re-evaluate.  If all works out, then 4 weeks of rest & in the 5th week remove the tumor.  Depending on the outcome, have a potential of 2 more weeks of radiation, post surgery.  This is a very agressive treatment plan but because of my age & general health, the Dr’s think I can handle it.  Always room for re-evaluation.

(Week in the hospital = 3 to 4 days)

Chemo Cocktail:
MAID
“M”esna
Doxorubicin (“A”driamycin)
“I”fosfamide
“D”ecarbazine

The overall affects are loss of hair, nausea and /or vomiting, loss of appetite and decreased blood counts.

What was next, was a series of appointments already made for me.  I was scheduled for blood work, CT Scan with contrast for starters.  The next phase was to determine if the cancer was exclusive to my thigh.  AND what the ‘marks’ on my liver were.  Things really started moving … so fast, that I named it the Cancer Skateboard!  I felt like I was on the ride of my life with NO CONTROL what so ever!  I was being told where & what time to be at my appts, etc.

Each morning, I  would say a little prayer … Dear God, help me handle whatever the day & appts bring.  Amen.

I met with Dr. David Ettinger at the Sydney Kimmel Cancer Center. He is the Medical Oncologist & a sarcoma expert with 32 years of experience at Johns Hopkins.  He reviewed my history/case & was responsible for coming up with my chemotherapy treatment plan.  I also met with Dr. Debra Frassica at JH Green Spring Campus.  She is the Radiation Oncologist & wife of my Orthopedic Dr.  She reviewed my history/case & then spent 2 hours with Alice, Oneida & I explaining radiation, studies & how the whole treatment plan would come together.  It was a lot to take in …