Penultimate Chemo!

Yesterday was my next to last chemo. I’m sort of numb about all of it. I doubt I’ll really comprehend any of this until a week or two after I’m all done. Still trying to take it day by day. But I’ll admit that in my quiet moments, it feels damn good knowing I only have one more week of chemo to go!

Everything went really well yesterday. I got my monthly lupron and B-12 shots before the infusion. Dr. Smith gave me extra Benadryl even though we dropped the Taxol dosage back down to 150 (yay for extra benadryl and yummy naptime). We picked up fro yo on the way home (this has become somewhat of a tradition for us) and then I got straight into bed and slept until dinnertime. Good day all in all, egh?!

We dropped the dosage back down to 150 for this past chemo and will leave it at 150 for my final infusion next week as well. We’re doing this because I started to show signs of neuropathy in my hands and feet (and we’re more or less caught up from the two weeks I missed while in the hospital). In an effort to prevent the neuropathy from developing further, I’m drinking my nasty glutamine powder twice a day, everyday. Hopefully that, together with the B-12 will help keep it at bay or even make it go away.

Last Friday we had dinner with Andrew and Katherine who were in town for a wedding. It was great to see them and hear all about their own wedding planning. Oh, how I do love weddings — they are so much fun! It was also my niece’s 8th birthday. I can’t believe how big she is. Bob, Sarah, Paul and I all went to the Giants game (my niece is a Cinco de Mayo baby and the Gigantes were playing the Dodgers — who wouldn’t want to go watch that game?) to celebrate with her. I think she was beyond excited when, in the 7th inning the jumbotron flashed a Happy Birthday message to her AND kids got to run the bases after the game. We didn’t stay for the running of the bases part, but I saw a few pictures. She was beaming from ear to ear!

Hope everyone has a great week!


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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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As you know by now, every day is an adventure when getting chemo. I never know what new symptom will reveal itself each day. For the past few weeks, I’ve def felt the fatigue catching up with me. We live in SF and our house is on a slight (by SF standards, anyway) hill. In the past three weeks, I’ve noticed that the climb up the hill leaves me pretty winded. Since my first Taxol infusion last week, it’s only gotten worse. I officially feel “cancer-y” — and, I hate to admit it, but I look sort of cancer-y as well. Especially when I’m just hanging at home without make-up on.

In addition to really feeling the fatigue, the latest is that I’ve been running a low-grade fever every night since last Thursday. The weird thing is — I’m totally fine during the day, but at about 5pm every evening, I get the chills and the fever sets in. Tonight is no exception.

Paul has been getting a good laugh out of this because I add layer upon layer to my body to try and get warmer — I look like a complete bag lady! In the past few days, I’ve been known to wear two robes and have a third draped over me as a blanket (all of this is in addition to layers of real blankets and comforters). Oy!

We checked with Garrett and he says we don’t need to worry — we will be seeing him tomorrow for my second Taxol infusion and he’ll check my white blood cell counts then (though he doesn’t think they will be the culprit as much as your standard cold virus). In the meantime, the RX is “steady as she goes”.

Anyway, the whole point of this post is to divulge the most disgusting thing that’s happened to me yet. You know how when you get the chills your whole body sort of tightens up, shivers run through it and your muscles involuntarily flex? Well, that’s been happening to me every night for 5 nights. At first I didn’t really notice anything weird, but last night it dawned on me — underneath all my layers — every time I shiver, I feel my expanders tighten and rise up (like, noticeably rise up). So this morning, after I took a shower and was getting ready, I stood in front of my mirror and tried to flex my chest — to my utter dismay, my breasts literally flexed. I can flex each one independently of the other like a male body builder WTF?

As if I’m not already dealing with enough body-image issues, I now have to add this to the list?

I called Paul immediately. I was in a complete panic. He tried to laugh it off and joke about it with me — which I erupted at. Once he realized how distraught I was, he changed his tactic and tried to plant the seed in my head that I can flex right now because it’s just my expanders and not the real implants. This approach was a little more effective.

I’ll ask Julie and Dr. Hong about this the next time I see them and report back to you. For now, I’ll just take a lorazepam and try to get out of my head about it.

As I mentioned above, we are off to chemo again tomorrow. Maybe I can convince Paul to do a post while we’re there and I’m in la la land from the benadryl!

Final thought for this evening — a fellow BAYS warrior, Meaghan, is having her mastectomy tomorrow. Please send all your healing vibes and strength her way.