Day 117 | Musings on what to say to those with cancer.

I love that through this terrible illness that I have been reunited with so many friends. It frankly sucks that it takes cancer or other tragedy to do that.

This article talks a little about what it feels like to realize your mortality and a lot about what to do when someone you love faces their mortality.

There are so many ways to be there for someone who is dealing with illness. I don't know if there's a "right" way to be there for someone going through something so severe. ...But I do know that it's not shaming the way someone has dealt with it.

No, I am not talking about active shaming. Not things as overt as, "you gave yourself cancer." I am talking about other kinds of shaming, like, "You should have been getting mammograms earlier."

I wish I had too. Don't know if that would have changed anything for me. My cancer is really aggressive, and they guess it grew over a pretty short period of time. (And it's damn lucky that I did self exams ... which I know I have mentioned :-).

Truth be told, I tried to take care of myself. I have eaten mostly organic for the last three years. For other health reasons, I stopped eating preservatives and upped my exercise three years ago too. I was tested for every type of genetic mutation related to breast cancer because I have a family history of a totally different type of breast cancer. To no avail...all the tests were all negative. There was no reason to be extra vigil about breast cancer.

In the time since being diagnosed, I have learnt a LOT about TNBC. My disease. My prognosis. And really, what I have learnt....it's mostly bad luck that caused me to get cancer. Me to get it instead of you or your sister or your other friend. Just. Stupid bad luck.

I am not sharing this article to say, "stay away." I love the support that so many of you have given. I double love "been there" advice. People that are breast cancer experts or have gone through chemo....keep sharing your personal experiences with the disease. If you read a rad article about some cool new treatment protocol (it's unlikely that I haven't read it - unless you love to read clinical trials), please free to share it. If you're a nurse (& I LOVE NURSES - they administer most of my care), and know some cool way to make my veins stop hurting all.the.time, tell me.

....But, please don't tell me or someone else with cancer / MS / Lupus / etc. what they could have done to prevent their disease or that some strange miracle will cure them.

I understand my treatment options. I have read so many things - I know a lot about drugs that I can barely pronounce because they've only been in text. Actually, I have treated this illness like a full time job since going on short term disability.

And - I hope that acting like it's a job will help me to have results. An onco with whom I recently spoke told me I was in the top .01% of educated patients, and that included health care professionals. ...but, I don't know if that will make me any less likely to have a recurrence.

Cancer affords you some choices - I chose not to have a mastectomy. I chose to have all my nodes removed (okay, well, the doctor sort of made that choice....But I chose to trust him.) I chose chemo. Actually, I chose 4 kinda of chemo. I will choose radiation. And, if the cancer is still there, which it may be....I will elect more medicine. Likely, I will choose Xeloda because I am not eligible for ... any .... trials.

This isn't to say that I only choose drugs. I also choose to exercise. I sometimes choose green veggies and sometimes, I choke down pizza.

I chose to go to yoga this morning, because exercise has been shown to help with TNBC. It didn't have to be yoga. I could have walked to the store or down the street. Hell, if I am honest, sometimes, it takes all my strength to walk down the damn stairs. Those days, I don't choose  yoga or walking.

....but, I get out of bed. Even some days when I feel so overtaken with sadness and grief over what I am facing and having to be so mortal "so young", I keep going.

If one diet or one type of food cured my cancer, I would only eat that food....Literally. I would eat it till I was sick. Then, would keep eating. Honestly, I would choose to eat only spinach forever over getting poked, prodded, and poisoned. I'd choose the treadmill over radiation (and I really hate running), but those aren't the kinds of choices I have right now.

I do choose to be mostly positive. It's not all the time, but it's most of the time. Sometimes, I can't help it - tears choose me. But, as much as possible, I try to choose yoga and walking and smiling and being with people. And when I can't, I still choose to leave the bed (sometimes, just to go to the couch :-) ).

"It is hard to be with people in grief. It is hard to be with people who are facing death, or with their caregivers. The next time you are, don’t give them stupid advice – they aren’t stupid. Trust they’ve given more thought to their course of treatment than you did listening to that public radio story. Trust yourself to just be with them in the unknown."

Day 112 | Change in Treatment Schedule

General Update 

Can you believe it's been 112 days?! Seems crazy that 1/3 of a year has been dedicated to Cancer. I'm ready to hand the C-word its evicition notice. But, there are some steps in between now and 295ish days...the potential end of treatment. 

I'm doing pretty well on my fourth and final round of AC. Some stomach issues. Some reduced appetite. Some fatigue. More sleeping. ...but pretty well overall. Glad to be done with the "red death". On to bigger / better things ... the next rounds of chemo! ....A little depressing, but, seriously, that's what's next. 

Early Taxol

Due to the aggressive nature of Triple Negative Breast Cancer, and how well I'm tolerating treatment...My treatment is changing again. Originally, the plan was to AC x 4, ending on 3.15, then a break till May for Taxol, a third type of chemo. 

First change, already noted: After reading about some success with trials in Triple Negative, we decided to add carboplatin, a fourth type of chemo, into the mix.  More on "carbo" and TNBC if you're interested.

Now, another change: Instead of waiting till May to start Taxol, I am starting on schedule on April 5. I will take four Taxol treatments, a three week break, and then, Taxol / Carboplatin mix for eight more weeks. With a possible Carbo boost at the end. 

New Treatment Calendar

• 4.05, 12, 19, 26: Taxol only
• 5.17: PET Scan
• 5.17 - or - 5.24: Carbo / Taxol
• 5.31: Taxol
• 6.7: Taxol
• 6.14: Carbo/Taxol
• 6.21: Taxol
• 6.28: Taxol
• 7.5: Carbo/Taxol
• 7.12: Taxol
• 7.26: Carbo boost
• 8.6: Supraclavicular biopsy
• 8.9 - 9.22ish: Radiation 

PET Scans

You'll notice I added the PET scan on/around 5.17. These aren't scanning for a new puppy (though boyfriend has been campaigning for a goldendoodle at the end of this :), it's a full body cancer scan.

Positron Emission Tomography: An imaging test that checks for diseases in your body. The scan uses a special dye that has radioactive tracers. These tracers are injected into a vein in your arm. Your organs and tissues then absorb the tracer.

One of the main differences between PET scans and other imaging tests like CT scan or magnetic resonance imaging (MRI) is that the PET scan reveals the cellular level metabolic changes occurring in an organ or tissue. This is important and unique because disease processes often begin with functional changes at the cellular level. A PET scan can often detect these very early changes whereas a CT or MRI detect changes a little later as the disease begins to cause changes in the structure of organs or tissues.

Okay, Mumbo Jumbo....What does that mean? 

If the PET shows that my cancer is anywhere besides the badly behaved supraclavicular node, this "new" treatment plan my be thrown out the window in exchange for extended chemo treatment and/or clinical trials in addition to or in lieu of radiation.  

I've been on the lookout for clinicals in which I may participate, but seems like a big old goose egg right now...So, hopefully we won't need that step. 

So, that's it for now. 

More chemo, faster...but I'll be finished sooner too. 

For today, I am going to try to do the exercise bike, as exercise has been shown to lower recurrence. I'll also try to eat something....because I guess eating is good =) We made guac and crab legs for dinner last night, so I'm thinking eggs and guac would be a nice meal.  

Day 106 | AC-ya later

What's new?

I finished AC treatments on Wednesday, 3.15! 104 days into this cancerous mess, and I have removed most of the cancer surgically and made it almost halfway through chemo.

What have I learned??

Well, for starters, I have really learned how to be my own advocate. I now have passed general cancer 101 and breast cancer 202. I can talk the talk. Still have a lot to learn before I earn my full MD, but I can converse with the doctor about my care instead of only learning about my disease when I am with them.

I've learned that even when something is pretty scary, it's surmountable. I was much more scared of chemo than surgery. To me, surgery felt like the known entity. You are cut. You hurt. You heal. They get the cancer out. Chemo seemed much more nebulous. You are poisoned. You lose your hair. You can't eat. You get sick. You get sicker. Then, you mostly heal. They may have gotten more cancer out, but chemo's full effect on adjuvant (after surgery) patients is more theoretical than measurable. But! I made it through the "red devil". Now, 12 taxol and 4 carboplatin and 32 radiations (and one PET scan stands between now and the end of this phase of breast cancer.

I've reinforced the power of family. I would not have been able to get this far without the support of my mom, dad, sisters, boyfriend, aunts, and extended family. 

I've learned that online communities can give you comfort. I met a few girls online that have TNBC too, and they have been a tremendous resource to me. I feel less islandy and more peninsulay now. I learn about what it's like to feel cured. What it's like to not. And that feeling totally scared and bewildered is a-ok. 

I've learned to be a resource, sometimes for the newly diagnosed. That positivity can make a difference. It's not all science and figures, but attitude too. The fact is that ...1 in 8 women will be diagnosed with breast cancer sometime in their lives. To be fully open, it sucks that I am among the first in my peer group. But, being in this "first" group, I think being honest and sharing my story will help give people strength later when they or someone close to them fights this battle. 

ALSO! I've learned that routine self-exams ARE IMPORTANT. (Sorry for yelling. But. They are!!). 

I've learned kindness from strangers on the street  - people are generally much nicer and more patient with you when they can see your struggle so outwardly (through baldness). And I've learned to smile through awkward yet comforting conversations about "what type you got" from others fighting similar battles. 

I've learned kindness from friends near and far, old and new. Texts, cards, lovely gifts, visits, and more. I've heard lovely stories about my life that I may have forgotten. I've also heard a lot about others' battles with cancers and similar diseases. This experience has reinforced what I knew to be true - My village is strong and full of amazing people. 

I've learned about FDA trials. Immuno therapy mostly. I've learned about trial protocols - what boxes you need to check to get into a trial. And how important these trials are to advancing the care we are offered. And what my next steps may look like if this chemo radiation surgery thing isn't enough. 

I've learned strength isn't always easy. Some days I look at myself in the mirror and don't recognize who I see. But, even on those days, it's easier to keep going. To keep fighting. Than it is to quit. 

So, we will keep going. And maybe be a bit more bruised, battered, and bald at the end. But, will be smarter and tougher too. 

--

Thank all of you for coming this far with me! Next post, I will let you know what's next for me. We changed the care path a bit. Pushing my body to kick this cancer to the curb faster and hopefully more effectively. 

Day 95 | Radiology Consult & Surgeon

Radiology Consultant
Visited with the radiologist today. She said that we are in for 6w2d (approximately) of daily radiation. The soonest I can start radiation is two weeks after the last chemo treatment. This means I WILL start two weeks after the last chemo treatment.

They will do general radiation all over the left side, with targeted boots as my breast scar and neck nodes.

Surgeon Update
Met with the wonderful, fantastic Dr. Farrar today. He is really the absolute best. No waiting either!!

He did a Physcial exam. No changes to either breast. Looks like we are in the clear on that front. :-)

Haven't gained any weight back, but trying!!