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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Feeling Beat Down

I haven’t posted in a while because I haven’t had anything good to say. This week got the best of me and I am down and out emotionally.  It’s been 7 days since the Adria leak and my arms are still killing me. I fight with myself everyday to try and stay positive and not let this process get the better of me — but it’s been a serious struggle.

Since I don’t really have anything inspiring to offer any of you today, I’ll just recap our experience last week.  On Tuesday I went in for my AC infusion as usual. All was fine until the Adria push. As you know, Garrett was administering the drug personally and decided to stop the push after I kept complaining about it.  Once we arrived home, Garrett called us to tell us he’d reached out to some colleagues about what happened and they suggested that I get the antidote. He explained that he was in the process of locating a practice and/or hospital that had the antidote in stock. Apparently the stuff runs around $10,000 a pop (yikes). He said he’d already spoken with CPMC and they didn’t have any, but he was about to call in a favor over at UCSF, where he used to work.  In the meantime, he’d ordered the second and third infusions to be delivered to his office the next morning for me — so we knew I’d be getting those from him directly. It really just came down to where and how I would get the first infusion on Tuesday night.

The scary part about all of this was that I had to get the antidote into my body within six hours of the onset of pain. So we were up against the clock.  Garrett called us back within 30 minutes or so and told us to head over to the UCSF ER. I was sent with strict instructions. He told me that my name would be flashing on their screen as a high priority and that I should not wait more than 5 minutes upon arrival.  WHOA. He also said that he wanted them to avoid inserting another IV anywhere near the vein he had used. His preference was to go higher up on that same arm or to use a vein in my surgical arm (which I thought was completely off limits for ever more — but apparently not in a situation such as this).

So we arrive, and Paul drops me off. I walk in on my own because he has to go park the car. They were waiting for me and I was escorted to the back past a room full of other patients quietly waiting in the ER.  Everything was really rushed.  They took my vitals but didn’t ask me for my insurance card. Not really sure what that was all about — hope we don’t get served up some insanely huge bill in a few months.

I hear the nurse talking about an emergency that’s coming in and then one of them impatiently asks “Wait! Where the girl with the arm?” to which the nurse who is taking my vitals, replied, “she’s right here.” Holy crappers, they really were waiting on me as a high priority — this must be really serious.

Paul arrives and we are moved to a room down the corridor.  The ER is really busy and you can hear people wailing in pain. It’s really distressing.  Once in the room, I down my hospital gown and climb into the bed. Within a few minutes, I realize there is another patient in the room with me, we are separated by a curtain. But that curtain can’t conceal her utter crazy! From what I could gather, she was an elderly British woman with the flu. She kept hacking up a lung and screaming out for food. That’s when I insisted Paul and I don surgical masks. Hell if I’m going to catch the GD flu while at the ER.

A few more minutes pass and a male nurse comes in and says he has 10 minutes left on his shift, so he’ll be inserting my IV for the infusion. I instruct him on where to place it per Garrett’s orders.  Then someone from the chemo lab came up with the antidote bag (BTW, the drug is called Potect (aka Dexrazoxane)) and she said that while the bag says to drip it over 2 hours, she wanted him to do it in 90 minutes. (Just a quick aside for all of you who will inevitably go on to research and Google Potect and all of it’s side effects, please keep all the information to yourself. I have no choice but to put my 100% faith into this drug and assume it did more good than bad to me — so if you learn otherwise, just do me a favor, and spare me. I really don’t need more information to make myself crazier than I already am).

Flash back to the male nurse who is now feeling the pressure of getting this IV in before his shift ends and is also feeling the rush of getting this antidote dripping within my 6 hour window — and enter unmitigated disaster.  He went after a vein around my right elbow area and failed MISERABLY. He got the needle in fine, but when he was threading the plastic bit, it hurt like a bitch. I looked at Paul for strength and saw him gasp and hold his hand to his mouth.  Then I felt it — wetness all over my arm. Blood was shooting out everywhere. It was all over my gown, the gurney, the floor and me.  Seriously? Seriously! It looks like a bear attacked my arm at this point.

After this goes down, I tell the nurse to just use my surgical arm. So he went in and placed the IV without too much trouble.  Then he placed the antidote bag and set it to two hours. Paul had to correct him and tell him to make it 90 minutes.  OMFG.

During our 90 minutes, I was visited by the ER resident as well as the doctor in charge of the ER. They did all sorts of neurological and strength tests on my hands and arms. Interestingly, the resident confessed to me that she’d never heard of the drug they were giving me and that Garrett had called in very specific instructions on what he wanted them to do for me. I suppose I was an anomaly to everyone in that ER! She said she was going to go research it and would be back to explain what the drug was doing. WTF?

Eventually she did come back and tell me that the antidote has a 96% cure rate and it works by circulating throughout the bloodstream and protecting my cells from harmful free radicals that are created by Adriamycin. I felt a lot better hearing this news. I also felt better knowing that the antidote wouldn’t undo the Adria that I did have in my system. It would’ve sucked to have to repeat the third infusion all over again.

So, we eventually are discharged and head home. The cancer blues have fully settled into my bones at this point. Paul and I argue in the car about the fastest way to get home. I am just crabby and beyond uncomfortable.

The next two days (Wednesday and Thursday) see us back at Garrett’s office in the late afternoon. He administers the second and third antidotes into my surgical arm and keeps a watchful eye out over me.  By the third day, I was stupid enough to do some Googling on my own about Adria leaks and read that amputation may be involved  HOLY FUCK. It was that day that I lost my shit. I was just quiet and inconsolable. I didn’t speak to Paul the entire drive up to Garrett’s office because I was so stuck in my head. The pain in my arm wasn’t getting worse, but it wasn’t getting better. Would I need my arm chopped off on top of all this other fucking shit?

When we arrived for the third infusion, Garrett could tell I was at my wits end and he assured me that amputation was not going to be needed, that the Adria damage had been mitigated and that it would take a couple weeks of pain to get my arm back on track. He continued to check in on us every night and reassured me that all will be fine.

We have to go back to see him tomorrow so he can get a really good look at my remaining veins and make the game-time decision of whether I need to go have a port inserted prior to my fourth, and final AC infusion.  We are assuming, he’ll say go with the port. So I have that to look forward to for the duration of chemo. Ugh. Oh, and the half moons on my fingernails (well my thumb nails and my pointer fingers only, so far) have started to turn black. I hear this is yet another lovely side effect of chemo. I cut all my nails down short and am going to walk over to the Scarlett Sage Herb Co on Valencia later today. I hear that rubbing tea tree oil into your cuticles can help you avoid having the nail detach from the bed entirely. Jesus Christ.

What a shitter of a week. Early on I tried to be a trooper and put together cute outfits. Doing this always makes me feel better. But you can tell by the end of the week, that I’m totally fed up.  But, I’m including all these pictures here for you to see, because this is what cancer looks like this week for me.

Hopefully each day will get better from here. Hopefully my energy and sanity will be restored as quickly as they left me. I have a lot of social commitments to look forward to this week, hopefully all of that will help pull me out of my funk.  If not, I may have to do some retail therapy right quick!

OK, enjoy these pictures, they are all over the place — just like my mind today!

xoxo

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