My LMS adventure

This diet is a slice of absurdity.  First my previous diet goals were eating healthy or losing weight.  Forget all of that.  Here are the points of my current diet (and why I eat at home most of the time.) No restaurant vegs/fruits.  Don't know how well it has been washed.  At home I am to wash the bagged pre-washed salads.  Wash fruits.  That makes sense with apples and other hard fruits where I normally eat the skin.  But washing a banana seems weird. (until you realize that you are handling the outside, then touching the inside with your hands. ) Well done.  Steak. Eggs. Meat.  Cook everything well.  For a medium rare lover, this is just sad. No buffets.  People, lots of sick people. Avoid crowds.  Okay, this is not restaurant suggestion, but it is. Wear a mask.  I own some, haven't worn one in public.  yet.  Add calories to your food.  Whipped cream on Jello.  Creamer in coffee....

A power port at that.  I'll read up on the advantages of this, and report back.  I'm a small woman, only 5 foot tall.  my veins are small also.  So the nurses and phlebotomists were talking about PICC lines and Ports since I started chemo. I'm on two chemo drugs, gemcitabine and Taxotere (I'll check spellings later).  The Taxotere is the stronger of the two.  It burns going in.  I've still got a reaction showing at the site from 19 days ago.  Monday will be my second dose of Taxotere.  I'm glad the port is in place.  Taxotere may also be the reason for my hands and feet being painful and psoriasis looking.  The skill becomes dark and gray, then sloughs off.  Ugly.  Painful.  Underneath though is some nice skin.  I've been rubbing petroleum jelly into my hands, as per the dermatologist's suggestion.  That helps with the sloughing and look of the hand, but not the pain. My feet feel like there are giant b...

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. 

Met with the oncologist discussed a port vs. PICC line.  Decided on a port. (longer use, less fiddly on a daily basis, lower risk of infection, best option for me at this time. )  She determined the rash on my hands needed a dermatology consult.  I was whisked over to dermatology (in another building on the USF campus).  His conclusion: I'm washing my hands too much.  or with the wrong soap, or both.  And I need to moisturize.  And don't soak in Epson salts....even if it feels good. Painful feet, but I can still walk on the ball of my foot, just not the heel.  Ah, and I may have found part of the problem.  I've been using the cat's bathroom... there's a sisal mat from IKEA.... very rough on feet, (but the cat loves it.)... so now I'm avoiding that irritant.  Friday I've got minor surgery scheduled to get the port.  Then Monday is Day #8 with gem/tax combination. Zeque was right (my hairdresser), the short cut is working well...

Last Monday, the knuckles on my right hand started swelling and turning red.   Various people assume I've punched a wall.  It's gotten itchy, uncomfortable... In a couple days I see my oncologist.  If this is psoriasis, the chemo is working and my immune system is getting weaker.  If it is an allergic reaction to the chemo meds, well, we might add something to reduce the reaction or find a different med.  (I'm on the Gem/Tax protocol--- if allergic reaction, the Tax is the problem).   If it is something else, well, who knows.  That's the way this has been.  My motto in relationships has always been "No surprises."   Lately, it has been one surprise after another. 

When Sharon T. came over to help with organizing my condo, I told her the basics of what's going on.  And she said, " I don't know if I'd be going back to work if I had such a short time left.... I'd go backpacking, I'd knock things off my bucket list, I'd...." and she gave a dozen really good suggestions. I don't know how long I have.  My oncologist is wise to not give a time period.  If the treatment is successful, if the tumors are smaller, well, even then she's smart to not give a time period. Closer to time, maybe.  My mother and aunt took care of my grandmother when she was dying.  They knew when the time was near.  They knew that the diagnosis was a death sentence.  My grandmother was diagnosed with Pancreatic cancer in 2007, and passed away that same year.  She died in the house my grandfather built for her, surrounded by her family.  She had time to say what she wanted to say, to make peace, with family members.  She healed ...

was playing when Zeque was cutting my hair.  Previously I had decided to shave my head with friends present.  Last Tuesday, I went to Zeque and told him what I wanted to do, and what was going on.  He talked me out of the shaved head.  Now, I walked out of his shop looking fabulous.  Yesterday everyone commented on the haircut.  I got lot of love for the haircut.  How good is Zeque?  I've lost about 15 pounds in the past 2 months.  No one noticed.  I get a haircut and everyone comments that I look skinnier.  Zeque has lost friends.... cancers, AIDS, other long term debilitating diseases.  He's seen the effect of chemo on hair... assures me that I need to wait and see.  Maybe I won't look like Riff Raff from Rocky Horror Picture Show.  I needed his voice of reason.  We also talked about the early AIDS epidemic, how scary it was, so little information.  And now AIDS is a chronic ...

Don't fake being okay. You only hurt yourself. Be real with what you're going through, just don't let it consume you. Balance. (picked up on Pintrest, don't know author). "When thinking about life, remember this;  no amount of guilt can change the past, and no amount of anxiety can change the future."  Anonymous I keep dreaming of a future, a future with a long and healthy life, not lived in the shadow of cancer but in the light. Patrick Swayze Read more at http://www.brainyquote.com/quotes/keywords/cancer.html#j4ScYF5cLCIaferv.99     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#UsBIjP3LQi014ifa.99     "For every complex problem there is an answer that is cle...

When I say I've got cancer, and someone tells me to have a positive attitude, I'm torn.  I know what they mean.  Don't give up.  Keep fighting.  I know that my quality of life is better if I am focusing on the good in life, avoiding negative emotions, and surrounding myself with happy positive people.  It's easier to be around people who are happy than those who are miserable.  I won't scare off people, so will have a larger pool of volunteers to help. That all makes sense.  But somehow I hear, "You will get better if you have a positive attitude."  Maybe that is true of some cancers.  I am quite envious of all the bouncing boobs out there.  My cancer is special, yep, special and unique just like me.  (that was probably sarcastic.)  A positive attitude won't change the cancer.  How likely am I to die?  Only 14% who have this cancer survive five years after diagnosis. (ULMS with mets to Liver)  My ...

Tuesday I got a shot to increase my white blood cell count.  Since the chemo kills rapidly growing cells, my WBCs need a boost.  I was warned that there would be bone pain... since the bone marrow would be stimulated. I thought I was used to bone pain.  I've dealt with minor arthritis for years.  However, this bone pain is different.  Pain across my breast bone, in my lower back and hips.  I'm grateful for the leftover painkillers from surgery.  So I'm slowly learning to take care of myself, be gentle with myself.  Okay, whine over... my body is doing what I need it to do... even if it isn't comfortable.

Here's a list of my dream team members and their functions: Leo, my personal trainer.  I always needed a personal trainer for accountability.  I joined YouFit at the suggestion of a friend, who also recommended Leo who has experience with rehabilitation after surgery.  I started off seeing him twice a week.  Now i'm seeing him once/week.  He keeps me honest and on track.  Sharon R.  my friend and dietitian.  I haven't used Sharon's professional skills formally yet.  But I'm getting friendship and support. Kris, a massage therapist.  My latest addition.  I've known her as a writer and will be using her skilled hands to keep my body limber and relaxed.  Looking forward to the first massage at her new employer.  Sharon, my organizer.  I have lived in this condo for a year. Moved the roommate in after 4 months here, and the place looked like a storage unit.  Never had time to fix the big problems, didn't...

Tuesday I got the shot pegfilgrastim.  This stimulates my white blood cell production in the bone marrow.  See, all the anatomy and physiology is helpful.  I didn't sleep but a couple hours on the couch last night.  I didn't even feel tired until 12:30a.m. quite a change for me. Generally I'm in bed by 9:30 or 10 p.m.  Then today... tons of energy, felt great.  Wow.  Just weird.  So I'm getting ready to go to bed now...

You know, I hadn't heard this phrase until the movie... still haven't watched the movie. Here's a list of what I want to do... some have been planned for a long time, others not. Some may happen, some may not. We'll see. I've got 6 months of chemo...so I want to make sure I've got things to do when I'm done. Big things: a cruise. Never have done one. I've got a friend who knows the ropes and will let me tag along. There's a shawl/stole that is in knitting book. Mom bought me the book, yarn and circular needles. It takes a great deal of focus.. (charted pattern). I think I want to own a TV... attached to the wall (the last several years I've owned TVs, but they weren't plugged in--- functioned as really ugly end table.)... Just to see what other people see. (and an Internet connection... I just can't get excited about doing the cable bill again..) Little things: Watch some of the movies I missed from the 1990's when ...

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...

When I was first diagnosed, I went looking for blogs from other women who had ULMS (Uterine Leiomyosarcoma).  There were a few (see below) but not many.  And no happy endings. I understand this.  Either the patient dies (and, let's face it Everybody Dies ) or they get better, move on with their lives and don't update the blog.  I suppose there are some that are a combination of both.  I've got a dear friend who has a blog about weight loss after bariatric surgery.... same process.  I'm writing this for myself - to document the ups and downs. I'm writing this for family and friends - so they can keep track now, or review later. Also so I don't need to give the vivid details over and over again. I'm writing this for future ULMS  patients or even LMS patients.  This is my journey.  Yours may be different... but it is nice to see the signposts along the way, remembering common sights and sounds and feelings. This will have too much info...

Today I got both chemo meds:  Gemcitabine and Docetaxel.  I thought they'd be administered at the same time.  I should have asked.  Not that it mattered.  Ninety minutes for the Gem and sixty minutes for the Tax.  I did get to knit this time... thanks to Joni in the lab who installed the IV when I got my bloodwork drawn.  I'll ask for her next time.  And the extra hour gave me time to watch Futurama, a Bones re-run (the one with the dead polygamist... but that's another blog...)  and finish (aka run out of yarn) for the gray turban.  (we'll see if it fits or if I need to modify).  I cast on for a black beanie hat in Knitpick stroll black.  It's stash yarn that needs a good light to knit... and the infusion chair is perfect. Plus I like the circulars for the knitting.... rather than the long straight needles.  No side effects, pleasant company (a woman and husband chatting in the next chair.  Overall a good ...

The positives of chemo. I don't have to shave for six months... I don't have to shave ANYWHERE. I get a free Brazilian wax, without the pain, without the cost.  I have dedicated knitting time during infusions. Weight loss (and fortunately, I've got 45# to lose) Meeting new people.-- like the lovely lady in the next infusion chair yesterday. Find out that I know a lot of amazing wonderful people.... who've been through cancer, survived it and are willing to help with information and time. Time to try a Mohawk hairstyle--- with pink and purple highlights. I can text chat with my daughter during infusions... Suddenly a personal trainer seems like a necessity, not a luxury.  He's holding me accountable for working out 3 times a week. (well, he thinks 4, but I generally just hit 3 and include his as the 4th.) Focus on what I really want instead of what others want. I'll keep adding to this..

Recently I went to a weight loss seminar with a friend.  It was a sales pitch, carefully crafted, but I wasn't the target audience.  One of the frequent refrains was "They lied to me."  They, of course, being the government, the pharmaceutical companies, the medical community, etc.  This group offered a simple solution to weight loss.... a few minutes exercise each day (buy the DVD) and a few simple rules to change the way you eat.  Because everything you know is wrong. Wow, how nice, for a few dollars and changing how I eat, I can get healthy.  But they had already planted some trap doors in the presentation.  "Don't look at your scale...it doesn't show how healthy you are."  Please don't tell me that grapefruit/vitamins/herbs will cure me.  This is not a simple problem.  There is not a simple fix.  I understand that my illness scares some people.  I've already gotten the question, "What did you do to get this?"  I...

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...

And I know how this works... My department is always open for employees on light duty.  At one point, a maintenance man was on light duty, he was going through chemo for GIST.  The kitchen staff would fix a plate for him for breakfast, since he had meds he had to take with food.  He shared my office, so I could smell the glorious food... and he picked at it.  I know what may be coming. So knowing I'll have food restrictions, what do I eat now? Sunday I had chocolate cake for lunch.  and coffee.... not a vegetable or fruit in sight.  It was glorious.  Sunday night I tried a new sushi place.  All you can eat.. but not the buffet type.  Instead, you order rolls, they fix rolls, and you pay a flat price.  Amazing. I've been reading the rules for eating.  Mostly they are to avoid infection, since chemo is carpet bombing my immune system.  Order drinks without ice, order food without garnishes. I'll need to make a short che...