Stupid Cancer

My heart broke into a million pieces a week and half ago when I got a text from one of my best friends telling me she has cancer.

She was in the ER dealing with sudden onset swelling of her face, neck and shoulders. She was scared. I felt sick as I read and re-read her text.  We’ve talked and texted a ton since that night. After being in the hospital for days upon days, and after enduring a crazy number of tests, poking and prodding, her final diagnosis is in — Non Hodgkins Large B Cell Lymphoma (SVC).  Fuck.

Kirsten was a bridesmaid in my wedding four years ago.  That makes 3 women (including myself) out of 7 from my bridal party who have been struck by the big C.  I F’ing HATE stupid cancer and mutated cells.

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Today, Kir is having a lumbar hickman catheter placed. She can’t have a port or a PIC line placed because of the location of her tumor. She starts chemo tomorrow.  It will be aggressive chemo and will last about 6 months.  She will come through this, but it will be a shitty ride.  I wish I could push “fast-forward” for her. I hope that she looks at me and knows she can do this and she WILL come out the other side.

All of this happened so quickly, my head is spinning for her.

Kir, on the eve before you start chemo, I want to remind you that you are a prize fighter. I am so sorry you got cancer. I’m so sorry you have to go through all of this crap.  But you GOT THIS. Remind yourself of your new mantra “short term pain, long term gain”.

When I was first diagnosed, I really took solace in Katy Perry’s “Firework” lyrics. Katy has a new song out that fits you to a T Kir. It’s called Roar. Here are the lyrics. I hope you make it your theme song:

I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything

You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready cause I’ve had enough
I see it all, I see it now

[Chorus]
I got the eye of the tiger, a fighter, dancing through the fire
Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar

Now I’m floating like a butterfly
Stinging like a bee I earned my stripes
I went from zero, to my own hero

You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now

[Chorus]
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar
Oh oh oh oh oh oh
You’ll hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar…

Ro-oar, ro-oar, ro-oar, ro-oar, ro-oar

I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar
Oh oh oh oh oh oh
You’ll hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar…

Kir, I wish I lived closer to you so I could hug you so tight. I love you and I’ll be on the first plane to NYC to help you. You just let me know when you’re ready.

YOLO

So, I am super embarrassed to admit that I just learned what YOLO means like two weeks ago, and I learned it from Keeping Up With The Kardashians. Yes, I am old. Yes, I watch KUWTK. Judge, don’t judge. I don’t care. I love those Kardashians and I don’t care what anybody says. My fave is actually Kim and Kourtney take Miami — it’s AH-Maze. Highly recommend for any of my fellow BC warriors laid up during chemo. Netflix the hell out of that sh**!

In any event, for all you other old fogies out there like myself, “YOLO” stands for You Only Live Once. I thought it a great title for this post since I’ll be recapping my swap out surgery and its aftermath.

One week ago Paul and I went to the surgicenter in Menlo Park for my surgery. I won’t say that everything went off without incident. Nope, rather, I will say this, my surgery occurred and my surgery went as well as could be expected.  We did encounter some administrative — shall I say — frustrations — but I won’t say any more than that.

I’ve been 100% forthright and honest with all of you on this journey. I’ve not held anything back emotionally or otherwise.  But the frustration we encountered on surgery day, were, well HUGE, but not worth rehashing because it was so upsetting at the time — BUT it was all resolved within 30 minutes so Paul and I both decided not to dwell on it, so I’m not going to go into details about it for you. Just know that it was an emotional roller coaster for me that day.

But ultimately, like I said, everything went off as planned. I was ushered off to OR 1 (the same exact OR where I had my bi-lateral done 7 months ago) and at the end of the long walk and long hallway, I turned back to look at Paul and wave to him and let him know that all would be fine. It was so nice to see him standing in the same spot as last time and supporting me in the best way he knows how — by just being there.

The slight difference between this surgery and my bi-lateral was that nobody else from my family was present. This one was an out patient procedure, so my brother (who lives locally) didn’t pop by (thought he wanted to) and my parents didn’t fly in from the east coast, b/c recovery is just much easier for this one (read: no JP drains to  deals with! hallelujah!) The way I look at it — I am in really great shape if I don’t need the whole cavalry at my side for a surgery. So there you have it.

Thankfully, all the administrative bullshit was all-consuming in the moments leading up to the surgery, that I didn’t even have time to get nervous. I think that was a total blessing in disguise!

So off I went to OR 1 and then I woke up in the recovery room and was high as a kite and happy as all giddy up to have made it to the end if this journey! I kept telling the recovery room nurse that I loved her. LOL. She thought I was nutz-o-rama!

This recovery was a bit worse than after my bilateral. I felt fine at first — then after about 30 minutes, I felt pretty nauseous. So they gave me more fluids and monitored me for awhile longer.  Finally, by dinnertime, I was wheeled the hell outta there and on my way home to my bed, my dog and my house with my hubby! yay!

The following days were a bit rough. Filled with Vicodin, stool softeners, laxatives and barfing.  Oh, also, I had to sleep sitting up for a few nights and I’m still wearing my super hot post-surgical bra! Yup, been wearing that bad boy for 7 days straight at this point! Super duper hot!

OK, anyway, fast forward to Saturday and my celebration party. Nothing was going to keep me from carrying through with the party. So, I donned my cute dress and off we went to our party. Wonderfully, my party was also during Pride weekend here in SF. This was an especially poignant Pride weekend because of the SCOTUS rulings earlier in the week. So it all just felt RIGHT and so HAPPY.

All of my local peeps who were there for me during this journey turned out and partied like it was 1999. We housed the tequila like it was the prohibition! Then the party moved back to my house and our backyard for a few hours. It was truly the best day I could have ever imagined.  Below are a few pics and I’ve also included a portion of the speech I made thanking everybody for supporting me (there are two files for the speech, so be sure to play both of them and THANK YOU JJ for covertly filming as much of the speech as you could manage. You are so stealthy! love!).

Like anybody else who has ever given a thank you speech, I missed a few points, so I’ll do a separate post to really jot down my thoughts on how I feel about everybody’s incredible support. Without all of you, I would not have made it. And the few humble words I was able to string together at the party do not do justice to what I really feel. So stay tuned for another post on that front!

xoxo and YOLO, people, YOLO!

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Completely Over It – Need to Vent

I’ve HAD it. I’ve reached my breaking point. For those of you who want to read about sunshine and rainbows, this isn’t your post.  For the past week and a half to two weeks, I’ve been fighting this low grade fever and I feel like nobody is LISTENING to me. I don’t feel well. I don’t feel right. I feel chilled to the bone, ache-y and extremely fatigued. I think “bone-tired” best sums it up.

When we texted with Garrett he told me to take tylenol and zyrtec-D and to let him know if the fever broke 101.5. Because at 101.5 your body is officially fighting an infection. Well, even at 100.9 — I assure you, I felt like complete shit. Especially when it went on for days upon days. But there were no obvious signs of infection at my port, so it was either just a side effect of the Taxol or an infection. Only time would tell.

Over the weekend, we went to Seattle for the C4YW conference and I still had my low-grade fever — so I was back in the hotel room every night by 5 and asleep by 8:30 — what a waste. By the time we landed on Sunday night my fever rose to 101.4. Still not 101.5 — so I took Tylenol, let Garrett know and told him I’d check back in on Monday (if my temperature remained high the next day, he’d want me to come in for blood work). I’ll post more on C4YW another day — when I’m in a better mood.

Monday morning we had to go to PAMF for two different appointments. One at 10am with Dr. Leibowitz and one at 2:30pm with Dr. Hong.  Since Palo Alto is so far away, we’d have to kill time between appointments — I wasn’t looking forward to this because I was still feeling really sick.  At my 10am appointment, they checked my vitals, I was at 100.4.  Dr. Leibowitz suggested I talk to Garrett again (I told him I’d be seeing G the next day and he would be drawing blood etc).

After that, we were off to kill time between appointments.  Paul decided we should go sit outside at the Stanford mall so he could do his work and take his 12:30 conference call.  Oh joy, I am chilled to the bone and have to sit outside for 2 hours (no I couldn’t walk around and window shop — that’s how tired I was. I thought about going into Nordies and napping in the ladies lounge. I always see women in there breast feeding — so why not let a cancer lady take a nap?). Even in the direct California sun, I was still cold in a v-neck t-shirt, underneath a long sleeve button-up underneath a puffer vest and jeans tucked into Frye boots.  I reached a new low, I was that beat-down, crazy cancer lady who sits by herself on a bench in the middle of the day at the outdoor mall. WTF?

Then, to add insult to injury, we finally get to my appointment with Dr. Hong and he wouldn’t fill my expanders because I was running a temperature (don’t get me wrong, I’m thankful his decision was one to keep me out of harms way — but I wish I had known, because we could’ve just gone home after our first appointment and avoided the mall fiasco altogether).

Dr. Hong also said that the tissue at the top of my left breast is getting weak so he wants to avoid a fill right now because that would just further stretch the top of my boobs, which is not what I need right now. I don’t know if that means he will never fill my expanders again and I’m stuck with the size boobs I have now whether I like it or not.  All I know is he said I need to wait another 4 weeks before coming back to see him. That means it will have been over 11 weeks by the time I get my next fill (IF, I get another fill that is).

The shittiest thing about cancer is you have NO control over anything (well, you can control your attitude and outlook on things — which I’m clearly having a hard time with right now). You have to surrender yourself to it. You have to put 100% of your faith in your care team and loved ones, even when they might disappoint you.

Fast forward to today — “chemo Tuesday” and I woke up still feeling like shit, surprise, surprise. Tears streamed down my face as I told Paul that I didn’t even have the energy to take Lucy out for her morning pee. The thought of walking downstairs to the backyard was too much. I think he thought I was being overly dramatic — so he gave me a pep talk and told me to put on some shoes and take her out — it would be good for me.  Which I did — but I felt dizzy and weak the entire time. After that, more tears appeared as I sobbed to him that I REALLY didn’t want to go to chemo today. I couldn’t fathom getting another infusion that would make me feel shittier than I already did.  They tell you Taxol is supposed to be way easier than AC — but I am here to tell you that they are lying. Yup, supposedly Taxol #1-9 would be fine but 10,11 and 12 would be rough because of the cumulative fatigue. F-that noise. That is a complete lie. All of Taxol sucks the life out of you — at least in my limited experience thus far.

When I got to Garrett’s and they took my vitals, I had a temperature of 102.2. NOW maybe somebody will take me seriously.  Garrett walked in and it was patently obvious that I looked like complete shit, in fact, I overheard him tell Tasha that “she feels like shit and looks like shit” ha! In any event, he said that some people do run a low grade fever on Taxol but that no chills would be involved, in fact, they’d be none the wiser. But since I have chills and look like shit and finally crossed the 101.5 threshold, he could rule out low-grade Taxol fever. He wanted to check my white blood cell count.  He said that if it went up since last week, it meant I was indeed fighting an infection.  He also listened to my lungs and said that they sounded bad. He said that I likely have walking pneumonia and that we’d be skipping chemo today and dripping IV antibiotics instead (my WBC count did indeed come back elevated week over week).

As mad as I am at the world right now, I’m so happy I finally got some antibiotics on board. I couldn’t have gone another day feeling the way I was feeling. Garrett said I should feel like myself again by Thursday (I’ll take the rest of the antibiotics in pill form starting tomorrow). Hopefully that’s true and my next post will be less of a downer.

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