Sunday, November 29, 2015

I wrote this two days after Chemo #3.  This is the post that stopped my blogging.  Well, at least for a couple months.  After I wrote it, I was too tired to grammar and punctuation edit it and post it.  So, it sat for a few days.  Then I became worried it was way too negative, so I wanted to edit it to be more positive or funnier or at least mildly amusing. Then more time passed and it somehow felt inauthentic to edit it, and wrong to “just skip it” and write another post.  So, I guess, I stopped.   I got “too busy”. Well, I actually was pretty busy.  Anyway, I wanted to write a new post about finishing chemo (huzzah!) but I needed to deal with this first. I did feel horrible. I did (and still do in many ways) feel a lack of support. I don’t need to pretend = lie about that. So here it is, a time-capsule from September 19th, 2015:

Exhausted. Depressed. Totally and completely ineffectual. That is what sums up today.

In the last 2 weeks things really ramped up at work and I have failed miserably at juggling priorities.

I feel bad that I didn't get a chance to do a post-2nd-chemo blog in order to say, “hey, it wasn't some walk in the park, but chemo #2 was certainly better than chemo #1” and “hey, wasn't it totally wickedsick how I had purple mohawk for like a week?” 

However, this time has passed.  Now I'm laying here, attempting not to drown in self self-pity. And even all the facts that I have, do not help this feeling of being completely worthless.  What facts? What facts, you ask?  Well white cell count were much better, seems the seven shots I had to inject myself with last time at $100 copay were worth it.  So, I get to do it again 34 more times… hoo. ray.  My red cells however, are low.  So, I am slightly anemic, not dangerous yet, but this explains the exhaustion. Protein levels are also low, despite my attempts to shove 75 gram of it in my face every day. But kidney function and liver function are normal and no signs of infection. Oh yes, and the most important part—shrinkage, major shrinkage.  We're talking like about 30-40%.  In fact, the only really negative part of my last doctor’s appointment was my being harshly admonished for working too much and not taking enough time to rest.

So here I am.  Trying to rest.  And just feeling totally useless, because there are other facts too.  The fact that I don't look like myself.  I don't feel like myself.  I can't manage walk down the stairs to go eat a cup of goddamn yogurt, which doesn't taste like anything anyway, without getting completely winded, feeling dizzy, my heart pounding.  And all the time, I'm trying really, really hard to have a great attitude, not to be a Debbie Downer or a complete asshole, but sometimes I just want to yell at people. “I have fucking cancer could you be a little bit more helpful!?”

The fact that this situation is only temporary, should be comforting, but right now, it really isn’t.

Friday, August 14, 2015

Okay.  Despite any reports or evidence to the contrary, I am alive.  This is a definite certainty.
Everything else… well…

Chemo is nasty.  I mean I can understand why so many people would like to delude themselves into thinking that there is a better (easier) way to fight cancer, with kale smoothies and crystals and aromatherapy.  I'll have a much longer Ranty-McRant post on this garbage later…

But basically there isn't a lot of choice on this one.  Chemo is like- “Come with me, if you want to live” And, uh … I do.  So super chemo fun times.  

In order for the cancer cells in my boob and armpit to die a lot, some normal cells, in basically every part of my body, have to die a little.  This isn't really that tragic, I mean all cells die, that’s what they do.  There are tons of cells in your body dying right now (just probably not as many as in mine)

But let me just say… and take the kids out of the room.  Chemo fucking sucks.  It is the worst thing I have ever had to do. Cancer fucking sucks. My friends, if there is anything you can do to increase your odds of NOT having to do this, please do.  Please, please, please, stop smoking.  Please stop eating horribly or drinking heavily. Reduce stress… get some exercise… floss.  Of course, I wasn't overweight, I didn't smoke, or drink (heavily) or have any of the other risk factors and this happened to me anyway, but that is beside my point.  If there are things that are within your control, please take control. Because, I probably love you and don't want you to have to do this.

In happier news, there are 5 embryos awaiting our cancer “journey” to be over and become little DeGarmo-Bodensteiners… BodenGarmos…DeBodensteins… GarSteinmos… This is going to be tricky…

Before this post comes to a close, I'd just like to take a second to acknowledge how amazing Jarrod is, for those of you that don't already know.  And, I can do this without embarrassing him, because he isn't reading these.  He’s letting me have this blog thing  as a private catharsis of sorts …open to the whole internet…Umm, anyway,  I really don't know how I would be doing this without him.  He is, by far, the most caring, patient, selfless person I know, and I feel so fortunate to be loved by him.  Okay, just wanted all of you to experience a touch of nausea too, so we can feel closer.


Tuesday, August 4, 2015

The countdown to Chemo begins… T-minus 2 days.

Ho. Ly. Shit.

Today, I did it.  I finally sucked it up and cut off all my hair, well most of it…

I was looking into using a cold cap during chemo to minimize hair-loss, but it appears it would cost over a thousand dollars and would probably give me major serious headaches, because that’s what I need in addition to the nausea of chemo.

So I guess bald it is…

Well a little bob, then a pixie, then a mohawk, then bald…  I was always a put-a-toe-in-first-to-test-the-water kind of kid…

I met with my nutritionist today.  Well, actually, I went in for the cancer nutrition class, but I was the only one that showed up, so I got a private consult instead.  She said, as long as I control the portion size, I could continue to drink alcohol and eat dessert with frequency … I like her…

Everyone with the Cancer Center seems super nice, even when I flipped my shit at the medical assistant that called to schedule me for my chemo.
“So we have you down for Friday August 7th at 8:45--“
“I’m sorry.  It’s supposed to be Thursday the 6th.”
“Well, looks like we’re all full up on Thursday.  We can do Friday at 8:45, one day won’t really make a difference”
“Seriously!?!?  It won’t make a difference, except I’ve been planning my whole freaking life around starting chemo on Thursday Aug 6th!!   AAHHHWWWHHHAARRRRRAAAAAHAHA!!!!”  *head explodes, spontaneous violent sobbing*
“ummm…hang on a second…*hold music*… okay yeah, we can do Thursday at 8:45”

Okay maybe it wasn’t that bad, but it was close.

I found out that my chemo will last up to 6 hours, I can have two guests at a time, and there will be Cheez-its and juice.  It sounds like a party… I may never leave…

I was thinking about doing a “live-tweet” style blogging from chemo, but quickly realized it would mostly be. 
 “Still sitting in the chair... It reclines… That’s nice… They have free Wi-Fi...” 

I feel like I have been prepping for this forever, and now that it’s almost here and I still feel like I have way way way too much stuff left to do.  But, just like an opening night, it’s coming, ready or not, and when it’s all done, we will have cake and champagne.

Thank You friends, I love you all.  

Wednesday, July 29, 2015

     Tomorrow is going to be a big day.  I’m going to be undergoing egg retrieval; which will be an invasive, but hopefully, relatively unremarkable procedure.  And then, in about 5 days we will have several tiny embryos ready to be frozen, so that in a few years I can have a child with the person whom I passionately love. 
     I have tried to refrain from teasing Jarrod too much; however, it does seem like his part in all this will be a lot more enjoyable than mine, albeit awkward as hell. 
     We got the final price:  $8,600 out the door, plus $900 in a few years on the other side of the freezer.  I knew that having kids would be expensive, but I've always thought that conception would be the cheap and easy, fun part.

     In other cancer news, I have a start date for chemo: August 6th.  I've also done a lot of shopping... I bought special lotion, special soap, mouthwash, pediatric toothbrushes, disposable plates and plastic utensils (avoiding contamination and metallic tastes) and a hands-free soap dispenser.  Jarrod installed a paper towel holder in the bathroom for more germ-free hand washing.  I bought a few head scarves, which I'm still on the fence about.  I ate sushi one last time, which I will be missing so badly, along with many other raw foods, for six months.  I got a pedicure with the lovely and talented Jess Minnihan, in order to (fingers crossed) ward off infections and keep my toenails from falling off, and also (bonus) pretty toes.  I still need to schedule a haircut… I'm avoiding this one for some reason.  I think maybe it’s more of an admission than any of this other stuff, that this is really happening.  But I know going for a cute little crop job now will make things easier if/when it all starts to fall out.  

   Okay, that's it for now...must get some sleep.  Egg-cavation starts very early see? see what I did there?  Shut-up, I'm hilarious. 

Saturday, July 18, 2015

Hey guys!  

    I had my first surgery… ever.  From this I learned some valuable information:  I bleed more than the average person, I metabolize local anesthesia faster than normal, and I am allergic to the fancy tape they use to dress the incision wound.  The nurse said she would have sworn by my reactions that I was a natural redhead.  Umm..compliment?   Anyway, I now have a port in my chest with a tube that goes into my jugular vein and a catheter pointing toward my heart… so that’s awesome.  Well, actually, it’s pretty great that it will be used to administer chemotherapy and I won’t have every vein in my arms completely sclerosed from repeated stabbings and the frying effects of chemo’s PH, or get any more bruises from people trying to draw blood out of my tiny, baby-veins.  But right now, all I can think is, “Damn, this stab wound hurts”

     Now, for some good news... results of the PET scan are in.  The lump and the lymph nodes in my armpit are the only places that have cancer.  No rogue cancer cells have broken off and set up residence in any other parts of my body. 

     And on the chances of future motherhood front, we went to the fertility folks yesterday and got confirmation from my oncologist that we’ll have enough time to harvest eggs before I start chemo.   I have begun medications in prep for this, which I have to give myself…by way of a needle… in my abdomen… twice a day.  This = A whole new level of respect for my diabetic friends.  The $7,400 price tag feels immense right now, but the odds are high enough that chemo will destroy my eggs, and doing the embryo thing seems worth it to get a shot at the future I’ve always wanted.

     It will be so lovely to take a break from cancer for a bit and enjoy the state fair tomorrow.  Everything fried, in my face. 

Tuesday, July 14, 2015

     Okay.... First blog post, ever... of all time... and it's about how I have cancer.  Wow, this is bizarre. I guess I should use this first post to catch everyone up to speed.  At some point while touching my breasts (because, let's be honest, everyone wants to) I noticed a lump in my right breast that did not belong there.  And so it was, with great trepidation, that I began on a strange, strange journey.
So far I have had:

• 2 Mammograms
• An Ultrasound
• 3 Core biopsies
• Appointment with my breast surgeon
• One support group meeting
• Appointment with my Oncologist
• Bloodwork
• PET Scan

     Still to come this week- I am having surgery to place a port in my chest to receive IV chemotherapy treatments and make blood draws easier, and I am meeting with a fertility specialist to, hopefully, secure a chance to maybe have a kid or two in the future.

     I was going to share a picture of the lovely bruise I got because the MRI guy missed my teeny-tiny, baby-sized veins when putting in my IV, but I was concerned that you might be eating or something.  Plus, the colors were not nearly as awesome as the bruising from my biopsies. (I bet you'd like to see those...creeper.)

     Anyway... Since meeting with my Oncologist I have a basic idea what my treatment will look like.

Before I start: Try to put a tiny baby in the freezer for a few years, get some more tests, go to the dentist, get a pedicure.


Step 1. In about 2-3 weeks start chemo. Take 6 cycles of chemo = 18 weeks = 5 months with no sushi and probably no hair.

Step 2. Take more imaging.  Go on a 4 weeks healing break.

Step 3. Have surgery.  Hope the cancer has shrunk enough to have breast-conserving surgery and not a total mastectomy.

Step 4. Take a 4-6 week break to recover from surgery.

Step 5. Start radiation therapy 5 days a week for 6-7 weeks.

Step 6.  Continue to receive HER-2 blocker injections every week for the next year, and take an estrogen blocker for the next 5 years.

Step 7. Live.  Be awesome. Probably go to Disneyland.

     So, that's the plan...

     Now, I have to say thank you to all my wonderfully supportive friends, with all their messages, well wishes and pledges on gofundme.  Despite my ever-irreverent tone, this is, in fact, cancer and everything that goes with it.  I am overwhelmed and I am fucking scared.

     And, while nothing can make cancer easier, my friends are making living easier... <3