My LMS adventure

Last week was interesting. I had been in severe back pain for several months. I got a PET/CT scan, and sneaked a peak at the results. Back pain was due to new mass on vertebrae. I had worked with pain management and started taking Gabapentin/Neurontin, but started stumbling and falling. I fell completely to the floor three times, and started using a cane. Last Monday, I went to see my oncologist to get the results. On the way into the hospital, I asked for a wheelchair...I realized I couldn't do the long halls and stay on my feet. After talking to me, hearing about the falls, and watching me walk, my oncologist pulled a neurologist into the room. They convinced me to be admitted. Their concern was the falls, which could cause damage to my spinal cord. I had lost about an inch of height due to the compression of my vertebrae. The report from the scan: Liver tumor is significantly smaller, lung lesions are larger. No evidence of tumors in neck at lymph system. There's a s...

When I went to see the oncologist, I started with her ARNP (Advance Registered Nurse Practitioner). She asked if I had seen the path report. I didn't admit that I had looked for it on their website, because I hadn't found it. Benign. She read the report twice. Then gave me a copy. The reason the tumor was hurting... it was dying. Necrosing... in medical terms. When Dr. Chon came in, we discussed the finding. This case went in front of the tumor board, to examine if surgery was the best option. Then the Tumor Board reviewed it again after the path report. Basically, I'm back to Live life full force. Which means my "to do" list is big. I know, rather selfish and shallow of me, but if I die.... my to do list is done. Everything transfers to someone elses' responsibility. So now I'll be an adult, and get something accomplished. Meanwhile, my phone is going away. I was going to kill it off in December (it is 34 months old). However, my ...

I'm grateful for my job, for my insurance, for my friends, for my family. I'm grateful that I found this as early as I did, that I have a chance to tell the important people in my life that I love them. I'm grateful I've had 54 wonderful years... 31 of them sober. I'm grateful for AA that gave me the tools to get and stay sober. I'm grateful for knitting which keeps me calm when my mind wants to race. I'm grateful for today, and focusing on today, and not thinking about tomorrow (outside of planning to get the port, and Saturday when I'll be with friends.). These are the big things.  The biggest thing lately is I'm grateful for Moffitt Cancer Center ... 1.5 miles from my door.  I could walk there.  The staff is wonderful, the treatments are wearing on me.... but I know it is what I need, to explore this adventure. 

I go to Moffitt Cancer Center's Infusion Center for chemo. So far, I've been twice. First stop is the lab to get blood drawn. If I'm running an infection, I can't have chemo. Then upstairs to the fourth floor for infusion. I follow the footprints to the end of the line, then wait for a registration clerk. This generally only takes a couple minutes. The first question is my date of birth and name. They check me in, hand me a wristband and ask me to verify the information. Then he/she fastens the wristband, and ask me to take a seat. The waiting room is frequently full. There's a lending library (lots of Star Trek novels, but a good assortment of everything.) Several puzzles are started on nearby tables. There are some comfy chairs/recliners for those who want to relax a bit or just don't feel good. Generally someone is curled up in a blanket, and my heart goes out to them. I know that someday soon I may feel the same way. There are computers wi...

Busy day.  I started with an appointment with my surgeon.  Updated her on the diagnosis.  I'm cleared to go back to work, and the oncologist will supervise my care from now on.  Dropped off the rent check, hit Sonic for some cherry limeade and a foot long hot dog (half price for Groundhog's Day).  Then to Publix to pick up the anti-nausea meds. My original plan was revised several times... Go to work? no..  Go to gym? no.  Ended up taking a nap. This is my first infusion, so I was reading everything so I knew what to do.  The infusion center is an interesting place.  Since patients are "regulars" the staff knows them.  One patient was coughing and spitting into a cup, the orderly quickly got a box of Kleenex for him.  Simple, but thoughtful.  The nurse had problems with my veins... the third stick worked.  Since this has happened before... we talked about a port or a PICC line.  Easier for them, less painful f...

The PET Scan was interesting.  Back in Indiana, in the dead of winter, I'd go to the tanning bed.  I only went a few times total. But the best part for me was the meditation.  The fan motor whirring, the chance to relax and empty my mind... Quite Zen and relaxing. The PET Scan was like that.  After registration, I was given an injection of stuff... this came in a cute lead container.. even the syringe case had a lead shield.  Then I sat for an hour, waiting for the stuff to circulate and accumulate.  (I'm guessing what it was doing.  I was knitting... ) Then lying face down on the CT imager (big white donut)... I see why they ask if you are claustrophobic.  The room was very cold, but they covered me with blankets. Moffitt is wonderful about giving blankets... even warmed blankets in some departments.  So I lay there just clearing my mind.  After several minutes, they flipped me over, and did the other side.  Then a differe...

My oncologist called yesterday.  She's concerned about something she saw.  She reassures me that she's gathering more information.  Monday's appointment is cancelled, and a PET scan is scheduled for Wednesday, with an appointment with her that afternoon.  She's very good about asking how I am doing.  At this point, I'm intellectualizing, and approaching this as a healthcare professional.  ---I kinda feel like the Doctor on Voyager (from Star Trek). Here's a good explanation of the PET Scan process/ rationale.  <<<PET scan >>> That site is specific for lung cancer, but seems appropriate since we need to know if the "nodules" in the CT scan are from the uterine sarcoma. Specifically there's a 4 cm nodule in the right lower lobe.  Since the PET scan article says "Because lesions larger than 3 cm are almost always malignant,..."  Today is a beautiful day.  -- Well, all Fridays are, aren't they?

So I've been chasing statistics.  It helps deal with the unanswered questions.  Today I found this quote: " Uterine leiomyosarcoma (ULMS) is a rare type of uterine sarcoma —a cancerous tumor of the soft tissue of the uterus. According to the American Cancer Society, only about 1,600 out of 52,630 cases of uterine cancer will be uterine sarcomas (a). The National Cancer Institute indicates that uterine leiomyosarcoma makes up around 30% of all uterine sarcomas, which means around 480 women could be diagnosed with ULMS in 2014." from:   Leiomyosarcoma article from Hystersisters.com Okay, I'm one of the 480 (projected figure) who were diagnosed with this in 2014.  Moffitt has a wonderful patient portal.  I've been able to view the CT with contrast scan report from last Thursday.  My appointment with the oncologist is a week from Monday.  I see more testing in my future.  Meanwhile, I picked up the disks from my previous C...

In the first days of this adventure, I found this TED talk. Baba Shiv talks about giving up the driver's seat TED Talk .  With this rare form of cancer, I choose to listen to my oncologist, and follow her directions.  My goal is to live another 10 years.  My roommate challenged that recently.  His sister has battled a variety of cancers for many years.  She's tenacious, intelligent and currently in remission.  Cancer has become a chronic disease for many.  I don't know.  I don't have the data (until the results are reviewed by my physician) from the latest CT with contrast scan.  I've gathered the old CT scans from other facilities and will be taking them to Moffitt next Tuesday.  Then... well, then we'll have a battle plan.  Overall, I'm working on multiple outcomes.  I need to be prepared.  For example, I'm going through my bookshelves and discarding many books.  Why?  I may be moving to a different home....

When I moved to Tampa, I wanted to be near young people.  My rented condo is near USF- Tampa.. and so I am within walking distance of Moffitt Cancer Center.  Moffitt has limited space... so they've got valet parking.  I checked in with the concierge of the Center for Women's Oncology.  New patients get a bag with information...flyers about the programs and services at Moffitt. Because I get nervous I showed up about 45 minutes early... mistake.  They were running late and the waiting room was packed.  Rather nice waiting room, coffee and water available.  I was knitting, and got a chance to chat with some other patients.  (easy to spot with the armband.) Ah, the joys of admitting.  Many forms, many questions.  In the end I was impressed with the friendly, efficient staff.  The doctor's assistant was efficient and friendly.  Then I was sent back to the waiting room.... When I was put in an exam room, I w...