Tuesday, February 28, 2023

Update from Facebook

 I'm feeling anxious today. I've been waiting on the latest gene testing so my next chemo treatment can be determined and started. I haven't had any treatment for over a month. Is it normal to feel ready to lose my hair again, be nauseated, exhausted, have bowel distress and who knows what else? If it buys me more time with family and friends, the answer is a resounding YES! Praying for results to the tests and answers from the doctor by the end of the week!

March 2, 2023

Breakfast of champions!

My genomic testing didn’t get submitted until this morning … so I get to wait 2 more freaking weeks for results. Oh! And the insurance won’t cover it. 🤬🤬🤬 Thus the healthy breakfast.




Thursday, February 16, 2023

Coming Full Circle

My biopsy results came yesterday. I was surprised and relieved when I read them. What I learned is that there are no more hormones involved in my cancer, estrogen, progesterone, and her2 - all negative. (That's called triple negative, and tends to be a little more aggressive with no hormones or her2.) I misread the result the first time through and thought estrogen and progesterone were back, but no.

I talked to Dr. Buys tonight about 8:00. I hope she was calling from home and not from Huntsman! I admire her dedication and empathy for her patients. She explained the results, then gave her recommendations which included some chemo I've done before ("the red devil" Adriamycin, Cytoxan, Taxol, also Kisquali, various immunotherapies, equally brutal to the ones I've mentioned) I don't care if I loose my hair again - the first three will definitely make that happen. TIME, as much as possible, is much more important to me than hair!

She said there are several clinical trials we can talk about (no thanks, not with a 50/50 chance of actually getting the drug). She recommended she send my biopsy tissue to the lab for genomic testing to help determine what will work best. It will take about two weeks to get those results back, then we can talk and come up with a game plan, based on what they think will work the best in my situation. I asked her if I'd be OK going another 2 weeks without chemo, she assured me it will be OK.

When I went through cancer treatments in 2010, I did 4 infusions of adriamycin, cytoxan and 4 more of Taxol, every two weeks. Taxol the first time felt like a cake walk after the adriamycin and cytoxan. When I started this again in 2017, I did 20 weekly infusions of Taxol, with Herceptin and Perjeta every 3rd week. By the end of that, I was so physically and emotionally exhausted. Never underestimate the power of a drug that is simultaneously trying to kill you and save you! I don't know where I'll end up but I'll do whatever I can to make it past 2024 (our 30th anniversary).

p.s. You may have noticed that my profile pic and username (Maxine Floof) changed. I had to create an account on youtube so I could make a comment, but having an account on YouTube is a video sharing function. I'll never post videos. Hence the new name, in case you see it on here.

Wednesday, February 15, 2023

Facebook update

 I’m feeling a great deal of angst over waiting for biopsy results. Technically, I am only 3 days post procedure (pathology gets weekends off) F, M, Tu. Today was a really hard day. I walked the dogs this afternoon and had a cry fest thinking about Valentines days we’ve had so far. And, of course, wondered what the future holds. Mat had a really hard day too, probably for very similar reasons. We both start therapy with new counselors next week. We gotta start working through the hard stuff. I’ll still see Annie at Huntsman, but I feel like having both options will be good for me.

We took the girls to Olive Garden tonight because I couldn’t bring myself to leave the house to get Valentines ready for everyone. Sorry to the older kids who didn’t even get a phone call today. TOMORROW!!! I promise!

Friday, February 10, 2023

What Causes Cancer? Depends on who you ask.

What actually causes cancer?  We humans have millions, billions, trillions of cells in our bodies.  Cells differentiate themselves based on where they are located, liver cells, kidney cells, skin cells, heart, breast and lung cells.  And on and on.  As science progresses, they find certain cell mutations that give a cell a higher likelihood of going rogue.  I did genetic testing back when there were under 20 known cell mutations for breast cancer.  BRCA 1 and BRCA 2 are the most familiar, I was negative for those.  I was positive for a Chek2 mutation.  They say if you have no breast cancer gene mutations, you have about a 10% chance of getting breast cancer in your lifetime.  If you have one or both of the BRCA genes, your chances jump to 90%. (Jen W., get those girls lopped off before it happens!) In the case of Chek2, it's 30-35ish percent.  Chek2 also makes colon cancer more likely for me.  I've had a colonoscopy where they found nothing, they say I don't need another for 10 years!  Only if I last that long!  In my early days of going to group, we had a lady with [obviously] stage 4 breast cancer and stage 4 melanoma.  Ultimately, it was the melanoma that killed her.  ** just for the record, melanoma doesn't just grow from basil cell carcinoma you can see on the surface - it can go undetected for a long time under the skin.  Also, lung cancer is more common in people who have never smoked or vaped a day in their lives.  I wouldn't, though, recommend smoking as a preventative for lung cancer.  Just saying.

Cells have life cycles.  They live and die, constantly replenishing themselves.  The problem with cancer is this. All it takes is one cell with a gene mutation to start dividing uncontrollably to create growths - lesions - tumors that are hard (near impossible) to stop, thanks very much to our lymph systems (in the case of stage 4 disease).  I'm way oversimplifying this, but that's all cancer is. We all have a part in doing what we can to stay healthy, get a colonoscopy, see the dermatologist, etc.  Some cancers can be avoided all together if we get checked out consistently.  Sometimes screenings aren't enough and we get cancer anyway.  Environmental hazards are a big contributor for cell mutation / getting cancer, think chemicals in plastics, commercial cleaners, carpet cleaning, upholstery sprays on couches, the stain on our kitchen chairs, air pollution, car exhaust, pesticides, herbicides, insecticides, etc.  It's impossible to get away or stay away from the things in our modern lives that can cause gene mutations.  If you're not spraying chemicals in your yard, your neighbors sure as heck are.

Cells + Mutation + Undetected Growth = Cancer

My support group was Wednesday, Dr. Alana Welm came to talk to us.  She and her husband run the research lab for metastatic breast cancer at Huntsman - both brilliant doctors!  As she explained what they are working on, I was a little discouraged by the length of time it takes to get things approved with the FDA.  I was also discouraged to hear how much pharmaceutical companies play a part in research with funding these research centers - I mean they have a vested interest in seeing if they [pharm companies] can get a drug approved for use, so it kind of makes sense.  After Dr. Welm left for another meeting, we asked Dr. Buys if the system really works (or maybe why it takes so long).  She said that it does work but it comes in spurts. Think of the side view of a staircase.  The stair riser is the successful implementation of a new drug.  Tamoxifen and Herceptin are examples of drugs I took for many years with decent success.  The stair tread is much deeper than the stair riser is high, because there are years and years of study that has to happen before there is enough success with a treatment to be approved by the FDA.  Is the FDA the bad cop?  They can be seen that way.  I certainly don't agree with everything they are charged to do, or how deep their control goes.  Is there corruption to some extent?  Sure.  It's no different from any entity with .gov at the end of the website address, red or blue.

The biopsy: This is pretty much what happened this week.  They asked me to get lab work done before today, but somehow the wires got crossed on what they needed specifically.  We were sent to the lab at the hospital to have the draws done again.  Wasn't a big deal, just a delay.  The biopsy that takes 5 minutes or less was held up on waiting for the lab results. What I didn't know was that I'd have to hang out in outpatient post-op for 4 hours so they could make sure there was no bleeding or other issues.  They really did just slap a regular old bandaid over the puncture site.  I chuckled when I heard it ("After all of this, you're only giving me a bandaid?")  ðŸ˜‚  

Now that it's done, I'm feeling a little bit of terror again.  I've never had this much cancer in my body.  My tumor marker has never been so high.  It went up because I've been OFF chemo for almost 3 weeks and can't get back on it until the biopsy results are back and I make a game plan with Dr. Buys.  That could take another two weeks. Ugh!

On tumor markers, it would be too easy if there was only one. But there's not, some people don't have tumor markers, some people do.  I don't know how many there are, there are quite a few, the one that expresses itself in me is 2729.  They know about tumor markers because of research that has been done in the past. These are just proteins that change up or down in the blood as tumors grow or shrink.

Beware: SNARK ZONE

I have heard it all when it comes to what actually causes cancer.  If I had known how long I'd be doing cancer, I would have started a book on all the bat crazy things I hear.  This is only a list of things that "could" cause cancer.  The things I've heard that can "cure" cancer?  I could have written a second book. This is a short list of possible causes of cancer.  I could write a long list of alternative cures for cancer! 

  • fluoridated water (has saved the teeth of millions of kids) but indeed, still doesn't cause cancer
  • cell phones cause cancer (So ... why do you have one?)
  • parasites  (there are about 6 millions species, so that makes sense)
  • the FDA is secretly trying to keep people from taking natural remedies (like they have time for that)
  • COVID vaccines cause terminal cancer (the covid vaccine builds up antibodies against COVID) 😳
  • fungus (there are between 2.2 million 3.8 million different species)  Which one causes cancer?
  • Sugar causes cancer, as does deodorant and warming up lunch in plastic containers

I've been talking to someone locally about alternative treatment modalities to try.  I can see fresh lemon juice in the water you drink, or the right B vitamins in the right doses.  I thought I could be open to the input, but I've heard it all before.  There are many youtube videos and websites that I would consider "reputable" sources from scientific entities like Mayo Clinic, Cleveland Clinic, Sloan Kettering, MD Anderson, Brigham and Women's, UCLA, Cedars-Sinai, Johns Hopkins, etc.  

Now, I'm not here to offend anyone, but in case anyone wants to go toe to toe on conspiracy, find someone elses toes.  I'm not interested.  Because I'm right and you're (conspiracy theorist) wrong.  

I couldn't resist.