My LMS adventure

It's been a long two months since I last wrote. I've been battling fatigue and depression while waiting for a clinical trial to open.  Parts of the problem are physical, lung tumor is pressing against lung, making it harder to breathe.  I've also got a painful cough.  Nights I've been taking fever reducers, then sweating.  This past Monday, I was admitted to the hospital for a clinical trial (I'm very excited). Only the fevers prevent me from starting the trial.  So we've run tests to find if there is an infection.  No.  Virus? No. They're giving me a week's antibiotics, and Advil to keep the fever down.  Next Monday I start the study.  I'm in the hospital basically for the next 3 weeks, Monday through Friday.  (as per research protocol. I'm ready for something to happen....

When I went to Moffitt last Monday, things didn't go as expected.  I was scheduled for labwork, then my oncologist, then round #7 of Yondelis (aka Trebectadin). That's not what happened.  The labs and oncologist visit went as planned.  Then I was sent to get a CT exam to see how the chemo is working. No food.... because it's a test.  (I was soooo grateful for the yogurt I grabbed that morning for breakfast). The test was scheduled late, I got lots of knitting done.  Then we saw the doctor for the results. The lung lesions are growing.  The Yondelis is not working. Chemo was canceled.  My oncologist works through the GYN clinic.  She has reached beyond her experience (I was her first patient on Yondelis).  She's referring me to the Sarcoma Clinic because they are more experienced in dealing with lung mets.   I have a first appointment with my new doctor on Friday. I've had a rash for the past two weeks, so my skin is breaking...

Gilda Radner was right.... It's always something. Tonight I coughed... and spit up blood.  I'll call if it gets worse.  I'm leaving a message to let my oncologist know.  I choose to believe that it is a good thing.   That the chemo is killing the lung lesions, and they are exiting this way. There's probably a negative way to view this. UPDATE: 6/4/2017 It happened again.  I think I know what triggered it.  I generally am sitting/standing straight.  When I bent over for several minutes to lean into a friend's car window to talk, I started with the blood again. Per the doctor on call at Moffitt.  This is not an unusual side effect.  If it gets worse, call and come into the hospital.  So far, it stops after about an hour.  But that's a strange, scary hour.  It gets my attention. My next scan will be in a few weeks.  We'll find out then if a lesion is "missing."  Hopefully, I have coughed one up....

I never met Amy Reed.  She was diagnosed with the same sarcoma I had, a couple years before I was diagnosed. http://www.philly.com/philly/health/Philly-patient-safety-advocate-physician-Amy-Reed-dies-leiomyosarcoma-morcellator-Penn-FDA.html She's my hero.  Rest in Peace.

Yesterday was Cycle #6 with Yondelis aka Trabectadin.  I love this drug.  I know it is expensive, and new.  I live near Moffitt Cancer Center in Tampa, so the Monday and Tuesday visit every three weeks is not bad.  They've got me on OnBoard to keep my red blood cells up.  This is not the first drug for me, I've listed my previous treatments at the end of this post. Here's how my treatment goes: Monday morning, I go to Moffitt Cancer Center, report to the lab, get blood drawn, and the port accessed.  Next stop, Gyno Oncology, where I check in with the Medical Assistant (weight, Blood pressure, pulse, temperature,)  Then I visit with an advance practice nurse, who reviews medications, allergies, current complaints, symptoms, questions for the oncologist).  Then I see the oncologist.  Questions asked and answered, next steps for treatment discussed.  Yesterday, we discussed when the next scan would be.  Ordinarily she g...

Two weeks ago, my roommate brought home an 8 week old puppy.  She was the runt of a litter with four boys... so she became known as "Sister" aka Sissy. The timing is good.  I'm recovering from the broken ankle, and now have permission to put full weight on both feet.  So I can walk the dog. Her breed (Australian Sheep dog aka Blue Heeler) requires an active family.  But I'm just getting used to having a puppy (my last puppy was 25 years ago).  Sissy is bringing back wonderful memories of my old dog. I still miss my cat, but this dog has been delightful.  Roommate is already on board with keeping her when I'm gone.  That was one of my fears, I'd abandon a little furry beast who didn't understand why I was gone.

I'm skeptical when someone claims they have the "truth."  Frequently, they are just reflecting their belief in their universe. Here's what my universe looks like. People are basically good and lazy.  We are formed by our genetics and habits.  We tend to think everyone is like us and our friends.  We are both right and wrong. We've learned to trust people like us, and fail to double check what they do and say. Politically, I hate the current name calling.  It takes more than a sound bite, or FB comment to make someone change their mind.  But we still need to listen. What I hear when the current president speaks.... FEAR and EGO.  He's afraid of anyone different than him, and fails to realize the USA is made of many different people and cultures.  That is what makes us strong... pulling from the strengths of many, and learning from the history of all. Truth is just a word.  Saying it doesn't make it so.  Please let me see your ...

A few days ago I let myself be dragged into the fringes off the political debate.  I thought I was being neutral (basically pointing out that I'm tired of the name calling, and that I felt it was third grade playground tactics).  I let some stranger on the Internet push my buttons.  After writing several posts, and deleting them, I stopped, changed into pajamas and went to bed. Those flamewars are never won.  And retreat is the best option.

When my father passed away, I walked into his house and became very aware that every item had to go somewhere else.  The house needed to be sold, it was 90 miles from my home and job.  Everything had to go.  I cleaned it out with the help of the neighbors, and my family.  As the executor, I was responsible for all the work and the paperwork.  That experience reminded me that I own nothing.  It helps when I pass on more clothes, or more kitchenware.  I really don't need anything.  Part of this is how I bought my home.  My roommate moved in with me in Tampa.  So we had two sets of everything.  Then we bought a manufactured home in a 55+ park.  It was fully furnished with everything from sheets and towels to kitchenware and furniture. So I've been getting rid of excess, and finally everything seems to fit. My local knitting buddies have had memorial potlucks when a member passes.  They also take care of the yarn stash, so...

A former co-worker just posted that a FB friend of his had died.  I click on the link to the deceased's FB page.  Young guy, no apparent health problems, maybe I should check the newspaper.. Earlier in my FB feed, I saw the lovely description of an elderly woman, her family singing her favorite songs, as she peacefully passed away.  There will be a link to the obituary, and well wishes, memories coming in from friends and family. In this electronic age, the news of a death travels in interesting ways.  I've never met either of these people, but I've feeling a grief for the people who loved them.  When my father and sister died, I ran into friends/acquaintances that didn't know.  One distant cousin called several months after my father's death, concerned that he hadn't called her recently.  Some Internet friends were notified after I broke into my sister's game account.  I think of all these things as I wonder how the news of my death will ...

So Tuesday, I was due for a visit to my neurology surgeon. It's been 6 months since I had the amazing surgery. He wanted MRI of the spine, and a follow up appointment. On Monday I saw my oncologist. Sometimes what actually happens doesn't match the schedule. Labwork, check. Then to Dr.'s office. Only she hadn't gotten the operation notes from my orthopedic surgeon. Mom and I went to lunch in the cafeteria (which has been re-modeled, and looks great). The cafeteria has new stations, sushi, Italian, burgers & fries, salad bar, etc.  In December when I was in the hospital, they had a fantastic food system.  I'd get a menu, order what I wanted, and it was delivered to my room in about 30-45 minutes.  Naturally, they were checking for diet restrictions.  No cold food that had been waiting around until someone had time to deliver it.  I let the kitchen runners know that I appreciated them.  When Mom and I got back from lu...

It's been an interesting two weeks. I'm getting better at crutches. Also, I have learned to use a wheelchair. There's a scooter on my front porch, but I haven't taken a walk with it yet. Lots of knitting getting done. Today I had a Cardiac CT to measure Left Ventricle Ejection Fraction. Tomorrow, I get x-rayed and can scratch the skin under the air cast. Two weeks post surgery, we'll see how it is healing. Then the ankle gets re-wrapped. Then waiting for another two weeks.

Warning TMI (too much information): When I have a painless bowel movement-- sometimes I want to announce that I've had a good BM.  Every day... my goal is avoiding constipation.

Monday, March 20, 2017 ORIF for Fx ankle tri-malleolar (sp?) That is: Open Reduction, Internal Fixation for three breaks in my ankle (Tibia, Fibula and Malleolus) Early to the hospital: 5:30 a.m. Check in, nurse's interview, change into gown, access the port, nausea meds, roll over to surgery waiting area. Then waiting. Eventually (it always seems too long) the ride into the surgery suite. Staring at the ceiling, and then a gentle voice telling me to "breathe the oxygen"... and later, "time to go to sleep." Waking up in the recovery room. Thirsty, getting water, and eventually getting home.... before noon. At home, I carefully (with an escort) go up the three stairs into my house, and sit on the couch. That's where I slept last night. So I still have a beautifully made bed. When I went to the bedroom's bathroom this morning, I had to come back to the living room for painkillers. Every 6 hours, I will be faithfully taking these, to kee...

Last Saturday, I was playing on the computer. I had a brilliant decorating idea. So I jumped up, to try it out, and CRACK, fell flat on my face. Did you hear that crack? My roommate heard it in the next room. He was walking into the living room as I was yelling his name. So he let me know I had broken my ankle. We went to the ER, got a soft cast and a referral to the orthopedic surgeon. I've worked in medicine for many years, but not in orthopedics. At the ER I got the impression I had broken just the fibula (the smaller bone). On Tuesday, I saw the orthopedic surgeon who sees breaks in the tibia and fibula as well as a cracked (some other small bone). He wants to do surgery. I want to see if it will heal. [EDIT: I just checked the hospital paperwork. Trimalleolar fracture of left ankle. I broke all three.] Also, I explained my situation. I've got an aggressive and rare cancer. Hopefully, I'll have 2 more years. I don't want to spend a quarter of tha...

Yondelis which is the amazing new drug that I'm taking. It was approved by the FDA in October, 2016. This drug prevents growth (although in me, it has shrunk tumors to about 1/4 of their previous size). Statistics show that it works for approximately 6 to 9 months. Of course, I'm hoping this will work much longer. I feel great. I started Yondelis in November. The first few cycles were tough. I had picked up a cold (no immune system) and slept a lot. I've been on this four months. Maybe Dr. Chon has another treatment planned after this. Otherwise, I head to clinical trials. They do clinical trials on people who are close to the end. And then, of course, there is hospice. With hospice, you only get pain meds-- no active treatment. I'm assuming the last few months will be the most difficult. Although, in December, I realized that a fast infection could take me out in a few days. More reasons to enjoy life now. So timeline.... If I follow the others on Yo...

At my last visit, the oncologist said there will be good days and bad days, enjoy the good days. Here's what I'm doing to enjoy the days. There's a Vera Bradley discontinued pattern that I like. I found a bag and wallet in that pattern (Botanica) on eBay. Tuesday I walked to the North Community Center. I'm doing the paperwork to get some money for a few fun things. Okay, the plumbing work for my home, and the painting for my home isn't fun. Although I'd love to paint my bedroom today... maybe I'll wash the walls and prep for patching... one wall at a time. A neighbor has passed a trike to me, you know, a three wheel bike. Here's the best part. It's very stable; I haven't ridden a two wheeler for 30 years. When I'm riding, I can't tell it is a three wheeler. The lady who owned it was around my height. Now I have no excuse to stay home from the pool. I feel like a kid that got a bike for Christmas. Do whatever I want.... ...

I live in a community that allows up to 2 cats or dogs (or one of each) under 35 pounds. I had a cat let him in and out, when I was very sick, I missed letting him in when he wanted in…. he wandered off, was captured by a sweet little old lady (or the animal control, but I watched their website, my cat never appeared). I have terminal uterine leiomyosarcoma. I feel good right now, I’m on a maintenance dose of chemotherapy. It will work (per the clinical trials) about 6 to 9 months. Then I’ve got clinical trials as a possibility.-- let’s say 6 months. My roommate is wanting a dog… a fairly big dog… bumping the 35 pound limit. I’ve been looking at Craigslist, the Humane Society and several rescues. If I got a dachshund, my mother would take it after I am gone. If I got a bigger dog (or even a Fox Terrier, which I’ve owned before) The best animal for me is not the best animal for roommate. I've got friends, etc. who might take a small dog, or if the dog is elderly, it may pass bef...

I don't talk about this much -- just to the right person at the right time. Lately, I've been thinking about my life... and an important part of it. I've been sober since September 28, 1983. Here's a list of what I've accomplished stone cold sober.... I've had a child out of wedlock (with an uninvolved partner) I've raised that child, Got a Bachelor's Degree Worked in a health care setting at the Director level Opened a new hospital with an amazing team of professionals, Liquidated my assets and moved to a retirement park. Have been diagnosed and treated for uLMS, so far: 3 types of chemo, radiation, and disability retirement. So many of these could make someone drink alcohol. I've made it through this. If you want to stay sober in crazy circumstances, you can do it!!

Okay, CT results from last Thursday. SMALLER.... all the lesions are about half to a quarter of the size they were. The liver lesion is dead, and slowly being carted off by my body's trash system. The spinal vertebra shows no growth; the adrenal is smaller (first time!!) and the lung lesions are shrinking. SMALLER. Other good things? I found the clothes basket with the missing underwear which now doesn't fit because of my 40 pound weight loss. No, I wouldn't recommend this diet. Another good thing? I had the energy to look for and find the laundry basket. -- I've got my appetite (and hair) back with this maintenance treatment of Yondelis. Ah, I'm pulling out the tape measure, and then ordering my fav underwear from Hanes.com. Heck, I may even order some yoga pants since all I have are black.....and too big (fortunately they have drawstrings....so they fit any weight.)