My LMS adventure

The chemotherapy was very peculiar, something that makes you feel much worse than the cancer itself, a very nasty thing. I used to go to treatment on my own, and nearly everybody else was with somebody. I wouldn't have liked that. Why would you want to make anybody sit in those places? Maggie Smith Read more at http://www.brainyquote.com/quotes/quotes/m/maggiesmit415746.html#iLb0Hz4bGfLuRFrl.99 1/12/2015 Nothing is scheduled yet.  But the first conversation with the oncologist makes this a real possibility.  I've made a list of people who might be good company for this.  I plan on doing this alone for as long as I can.  I live near the hospital, -- literally within walking distance.  Despite agreeing with Maggie Smith, I understand why having family and friends around is important. Someone is watching you... who knows you.  They call for help when needed.  They can distract from the waiting times, the cold food, the discomforts...

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...

On Tuesday, I visited friends. I've been isolating since the first path report.  Not wanting to scare people, but without enough information to reassure them.  Between testing, tiredness and assorted chores, sightseeing and etc., I've not seen many people since the surgery. These friends are a particularly dear resource.  They've faced physical problems, watched friends struggle, and pass away.  They've got the practical information I'll need.   I'd like to say I was gentle with them... But when I got to their house, I gave a big hug and kept hanging on.  I blurted out the entire truth, warts and all. This is what I needed... long time friends, casual conversation, random musings about the future.  I need the distraction while waiting for Wednesday; I needed to reconnect and feel the love. I roamed over to a nearby small town to meet another friend at the local yarn shop.  I stopped for dinner and had a wonderful chicken Caesa...

Today is the PET scan, and the big oncologist meeting.  I started the day with Facebook, and a lovely show of support from my high school classmates for an anonymous classmate who is having testing today.  I had shared with the class historian (okay, not a real title... but she keeps track of the 600+ graduates from 1978.)  PET scan in the morning. I'm drinking hot tea with sweetner.  My neighbor is going with me to that.  I've got knitting to do.  I'm working on a turban.  Here's the pattern, I'm knitting it in purple Caron Simply Soft. <<<Click here to go to the free pattern>>> In the afternoon, my ex-boyfriend is going to the MD appointment.  I'm realistic.  I work in the healthcare field (in Health Information , aka Medical Records).  I understand the CT with contrast, and why we're getting a PET scan.  We didn't catch this as early as hoped. Deep breath... It's going to be okay.

While this blog focuses on the LMS, remember I've got a life outside LMS.  I am: a knitter, currently working on a baby blanket for a co-worker. a mother of an adult daughter. a mother-in-law to a man who adores my daughter (and vice versa). an employee of a hospital. a trained professional. addicted to the Internet. JulieIndiana on Kingdom of Loathing. a member of several message boards. A Doctor Who fan (Matt Smith-- because your next question will be "Who is your favorite Doctor?") from Indiana (moved to Florida in 2008) owned by two cats. loved by many. This disease isn't me.  When I'm talking with friends, the conversation is about the weather, latest news, common friends, etc.  It's not (always) about the disease.

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 here's where I get worried.  I made arrangements to meet a friend for lunch, and forgot what day, ended up having lunch a day earlier.. which worked out great.  My exboyfriend (who wants to just be called a friend now... but we were together 16 years...so exboyfriend means more than friend.) lives across the bay, I drove to his house.  We chatted about the surgery and outcome.  We discussed how to tell my daughter.  We discussed sharing this with a mutual friend.  (and will wait until after the appointment Monday... yes, I'm making a list of people to call after that appointment. He's optimistic, but also realistic. Part of the agenda was asking him to be the caretaker of my family furniture until my daughter is able to come and get it.  He will be involved in cleaning out my condo, getting rid of valuable stuff (he's been eBaying stuff for ages).  Since he lives about 45 minutes away, he can help, but not daily.  He'll be ...

Before I met with my friend M, I made an outline of how to break this news.  It seems that the people I'm telling are having a worse time than I am.  They are convinced I'll beat this and cancer is a chronic condition.  Maybe I will.  My outline for telling friends is basically: It's going to be okay. Surgery/path report currently waiting for more info I'll know more on Monday. I don't know what I might need in the future, but can I call you if I need something? Yesterday I told my friend M about the LMS.  We had a wonderful dinner at a nearby Greek restaurant. (Acropolis, Bruce B Downs Blvd, Tampa, if you're curious).  She commented on how good I look (I've lost about 15#, somewhat intentionally) then asked how I was doing.  I dodged that question.  We talked about her new job, her relationships, board games she's played, a visit with her mother... Good conversation.  After the entrées arrived, the conversation lagged...

I've been beating the odds for most of my life. I grew up poor on a farm, while my dad took college night classes.  He graduated when I was 8; the family moved to the big city when I was 9. Poor rural, to Comfortable Suburban was a rough transition.  But I succeeded.  After graduating high school, I  worked for a year.  Then I went to college and got an A.S. in Business Management.  I beat the odds after dropping out of the educational system.  After graduation, I got married, but divorced after 18 months.  (abusive relationship, I realized quickly, I needed to leave.)  I drank too much, got sober at age 23.  I've stayed sober since then.... 31 years last September.  During the first several years I was sober, some assumed I was just visiting the 12 step group.  "Aw, you're too young to be an alcoholic."  If I had listened to them, I would have drank.  My stubbornness paid off.  At age 26, I had a ch...

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....

That went well.  I got there on time, started drinking the iodine stuff... Larger waiting room, so we weren't packed in as tightly. I'm debating the bring your family with you.  I can see the advantages, but am going to wait until later in treatment to involve friends.  There's an orientation every day, and I'm going to see if my significant other/roommate can go.  Several people had many family members with them in radiology.  However, I feel better navigating on my own... for now.  Ah, and the surprise of the scan... I'd forgotten how the contrast makes it feel like you are peeing on yourself.  Pleasant warm genital feeling.... So my task today is exercising and drinking lots of water to flush the iodine from my body.   Happy Friday Eve!!

Cancer taught me to stop saving things for a special occasion. Every day is special. You don't have to get cancer to start living life to the fullest. My post-cancer philosophy? No wasted time. No ugly clothes. No boring movies. Regina Brett Read more at http://www.brainyquote.com/quotes/quotes/r/reginabret586771.html#Rf5K2ymWYGUSkDMc.99   I'm drinking coffee, no cream preparing for the test today.  Afterward, some typical errands.    Yesterday I told an old friend.  I didn't mean to.  But after talking for quite a while, it slipped out.  Don't worry about me... yet I am worried about me.  Has it spread?  Rare and Aggressive... I've been coughing for about three months.  The flu, another cold... or ... well the test today will let me know.    I'm working a game plan at the Superbetter.com website.  Chose my superhero name:  Julie the dragonslayer.  Subscribed to the LMS newsletter.  Stopped...

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...

ready for a new challenge?  What a roller coaster.... After several episodes of severe pain, my gynecologist and I decided to remove my uterus.  The original diagnosis was fibroid tumors, which are painful and annoying but benign.  The Internet headline after I scheduled the surgery?  "10 most unnecessary surgeries"--- and hysterectomy was #1. The Monday after surgery, the pathology report came back, and my surgeon called to discuss the results.  I have leiomyosarcoma in the removed uterus.  Nothing moves quickly in this kind of situation.  Two weeks after surgery, I met with my surgeon, (the wound is healing well).  Three weeks after surgery, I'll be meeting with a specialist.  I've spent two weeks researching the diagnosis.  There's good news (it was contained).  There's bad news "LMS is a rare and aggressive cancer."  Tomorrow I meet with the specialist.  We'll run tests, then formulate a plan.  From the...