Genome results

 I did get an update from Dr Buys today. I was standing in front of South Davis Junior High when she called so it was hard to hear. Take all this with a grain of salt, I reserve the right to change all the details after I see her next time!

Testing came back from the genome lab. Chemo won’t work anymore but there are still options. She’s going to see what studies I qualify for (remember when I said “no way on studies!”). Funny how perspectives change. There are also some drugs that aren’t technically chemo that we can still try.

I don’t necessarily feel super optimistic about it, I’m sure I‘ll feel better after I have a chance to sit down with her to ask more questions. This has been a really rough winter on me. Can somebody order warmer temperatures please??

Cemetery Coolness

 Just talked to the guy at Bountiful City over Parks and the Cemetery. I’ve wanted to plant a tree on two of our plots to get it established, make sure it’s planted “correctly” and choose (and pay for) what I want there. He said it wasn’t a problem at all, that when we’re ready, he’ll have guys there to help if necessary. How cool is that?!

Lymphedema

 While fixing lunch today, I felt my left arm start to swell. In a matter of 15 minutes, my arm filled with fluid. Lymphedema. In 13 years of cancer, I've never had a problem. I've had the compression sleeve for about that long and have never used it. So why today? Why when everything seems so FREAKING overwhelming? Why, when I can't think of a single good reason for it to flare up right now, today.

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.

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.

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!

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?")  😂  

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.

Blaahhh.

 It's been a long while since I wrote.  I've been thinking lately about all the clever things I should write about.  But I had scans done this week, so all I can think about is that.

The chest CT scan results still haven't come through.  I talked to my doctor about it, so she'll make a phone call.  My pelvis/abdomen results are crappy.

There is a new well-defined area of decreased enhancement in segment 2 of the liver measuring 4.1 cm in greatest axial diameter (2:7.) There is also a new area of decreased enhancement in the inferior aspect of segment 6 which measures 4.1 cm in greatest axial diameter.

 

A cystic structure adjacent to the spleen and upper left kidney is stable. No mass or adenopathy is seen elsewhere in the abdomen or pelvis. No dilated loops of bowel are identified.

 

IMPRESSION:

 

1.UNCHANGED BONE LESION LEFT PROXIMAL FEMUR

 

2.NEW LIVER LESIONS CONSISTENT WITH METASTASIS

Two golf balls.  Dr. Buys recommends stopping all current treatment (because it's not doing it's job).  She says we'll do a biopsy on one of those golf balls to see how the genetics has changed from the biopsy I had last summer.  It's a very frustrating "cat and mouse" game, cancer is always a few steps ahead and then we catch up.  I told her she's got to keep me alive until at least the end of 2024, so we can celebrate our 30th anniversary!  In the meantime, I work on photo books, legacy essays, and personal/family histories.  I'll be OK in a day or two.  We haven't told the kids yet, that will probably happen tonight.  Please send prayers our way, along with all the happy vibes you can muster!  

Dogs vs. Opinionated People

I got a call from Dr. Buys tonight.  She gave me the results of the scan, then left me a message on the report itself.  She said the MRI wasn't concerning for cancer spread, but that my hip/femur joint is compromised because of previous cancer in that spot and/or the radiation that was administered to treat the cancer.

DAGNABIT! I wasn't told about that possibility when I had the radiation.  Bone death due to lack of blood circulation.  I know these poor doctors do everything they can for us to make treatments and symptoms doable.  I'm not mad about it.  I got 2 years with no pain in my hip.  Only recently my hip started to ache again (not excruciating like before, but certainly anxiety-provoking remembering two years ago.)  Mat's dad was staying with us at the time (2 years ago).  It was pretty funny having two physically unstable people trying to help each other get around.  I don't regret at all taking him in.

She told me there were some options (not really great ones) but she highly recommended seeing an orthopedic surgeon who can determine the best course of action. I see a hip replacement and titanium rods in my future.  I said I was content to put that off as long as possible, but she pushed for "sooner" rather than "later".  If I fell and fractured my hip/femur, it would be a much bigger deal to repair.  

With all of that said, we've had to make a hard decision to let one of our dogs go.  I can't keep up with them both.  Walks are a joke, they're like sled dogs, whoever pulls the hardest and crosses the sidewalk the most to smell the pee?  It's impossible for me to handle them--forget teaching them skills!!!  When they are together, they both try to be "alpha", Pyper (Havanese) is sincere about out-competing, out-barking, out-for-blood with all other dogs.  Goldendoodle Marley, on the other hand is so sweet, she just wants to play constantly, but Pyper sticks her nose in the air at her.  That girl (Pyper) won't let anyone else have the upper hand.  We've had Pyper for about 3 years, there was always a second dog, she was always out-performed.  We are/were guardians for Marley, meaning we allow the breeder to get 4 litters of puppies, then she's ours.  She just had her second litter.  I had to send an excruciating text to the breeder about finding a different guardian family for her.  They'll be a lucky bunch!

As I suspected, Pyper is an angel being the only dog here. Little Stinker.  What she's needed all along is to be the only dog.  Me and McK were team Marley, Mat and Brooklyn were team Pyper.  Maddie and Isaac were allowed to express opinions, but the 4 of us had to be the ones to decide.

Here's the darn cuties:  How would you choose? Both pretty cute.  My choice, Marley.  Definitely Marley.

Marley chews anxiety holes in things when she's in heat and pregnant.  Nothing is sacred! Socks, shirts, shorts, leggings, underwear (especially if they are fragrant), towels, etc. etc.  

UPDATE: Last Sunday McKinley came in my room in tears.  She said she needs Marley to help her with her anxiety.  So what do I do?  Text the breeder and tell her we want to keep her after all.  So we're back to 2 dogs and a Mom who can't handle them both.

Facebook Update

 Went early this morning for an MRI on my left hip/femur. I have reports already ... There's a lot of complicated words unlike anything I've ever seen on a scan, but what I'm gathering is my femur bone at the tippy top is dying due to lack of adequate blood flow. Chemo and radiation are possible causes, and there are treatments up to and including a hip replacement. Sounds like a party!!! I won't do a blog update until I've talked to my doctor, which could be anytime between now and the 15th when I have my apppointment and chemo.