I'm Earning My Stripes

Okay. Long time no post. Lots to say, not a lot of desire to say it, but the fans beckon. ;)

On Wednesday April 17th I got my first-of-four doses of Taxol, a chemo drug that is supposed to be less difficult than Adriamycin/Cytoxen (the drugs I got in my first four doses of chemo). The infusion lasted nearly 8 hours. Dave was with me at the beginning, and Nicole came to be with me at the end (thank you!). All told, it was . . . long.

Thursday brought the Neulasta shot, and Thursday night came the pain. At first I thought the pain was Neulasta pain, but it was far worse than any I have had so far, so I inquired further. It turns out that a rare possible side effect of Taxol is something they lightly call "leg pain." That's like nick-naming Shaquille O'Neal "Tiny."

For three days straight my hips, pelvis, femurs, knees, shins, ankles and feet throbbed intensely and incessantly. Aleeve, Tylenol, and Advil, even in combination, didn't even touch it. Sleep was difficult. Functioning at all was difficult. I cried a lot.

We had a long-planned family trip to San Jose on the 19th-21st for Knox's Jiu-jitzu tournament. The trip for me was excruciating. At the tournament I sat in the bleachers rocking and writhing and rooting for Knox. Later Dave took the kids to Great America. I opted not to expose myself to the germy world of amusement parks while immuno-compromised. I stayed in the hotel and completed lots of letter writing and other paperwork, all while rocking, writhing, and taking breaks to pace the floor just for variety. Although it was a weekend, I was eventually able to get in touch with Dr. Mazj through Nicole and he called in a prescription to a pharmacy close to me. A super dose didn't give total relief, but made things bearable, for which I was extremely grateful. Unlike the trip there, the trip home was sob free for me.

Fairy Sophie at Great America

Rub-a-dub-dub. Hotel hot tub.

Besides "leg pain," there is another side effect I'm experiencing that is almost as unpleasant. Talking about it in detail here would not be genteel. I'll just tell you it rhymes with Shmemorrhoid and is about the size of Rhode Island. Occasionally it incapacitates me entirely. Dr. Mazj sent a referral to a colorectal specialist for me, but that office says it will be 6-8 weeks before I can be seen there. I sincerely hope by that time I will not still be suffering in this way. And before you suggest I try prunes or stool softeners, let me assure you I have tried many combinations and have yet to find the magic dose that results in a happy medium between debilitating constipation and gut wrenching diarrhea (so much for genteel).

Another change from my first four cycles of chemo is that I am now receiving weekly doses of Herceptin, the Her-2 fighter. Recent lab work showed my hemoglobin levels to be low; I am iron deficient. So I am also receiving infusions of iron. Now I am going to the infusion center every Wednesday. Odd weeks I get full chemo, even weeks I just get Herceptin and iron. The Herceptin and iron infusions last a little over 3 hours. I should get used to this, because even after my surgery, I'll continue getting Herceptin for one year. My Taxol infusions last 7 hours. Oy!

I do not enjoy chemo. I taste the saline. I have to pee a lot because of so much fluid going into me. I have to wheel my bag tower into the restroom with me. There is a limit to the number of "Love It or List It" episodes I can handle in one day. Oddly, I don't even take an interest in the lives of the people who are treating me anymore. I used to be full of questions and conversation. Now I just want it over with.

Case in point: this kind person has been my nurse for the last two Wednesdays.
I know nothing about her, and can't even remember her name. :(

Last week I saw Cindy, the survivor whose story and mastectomy I shared in this post (not Cindy Brown), and I couldn't gather the stamina to be enthused to see her. I have to say I think chemo has knocked me down in a way that feels quite final. Even if it occurred to me to do more projects like this or the picture below, I would probably just nap instead. 

Fun I had back when I still spelled cancer with an S.

On the bright side, the infusion center has decent snacks and fast WiFi. Also on the bright side, I am no longer experiencing depression. Lethargy perhaps, but not depression. Sometimes it is hard for me to tell where the line is between physical inability and good old fashioned laziness, but Dave assures me that cancer patients are not required to look for that line. This is heartening.

Now that we're all caught up on treatments and symptoms, let's talk about surgery developments. At the beginning of April, because I was a couple months out from being finished with chemo, I called Dr. Schrader's office to get the ball rolling on the referral to UCSF. If you've read my story from day one, you'll remember that Dave and I had previously chosen UCSF because of Dr. Schrader's recommendation and connections there. But when I called her office, I was informed I would not again be a patient of hers because she herself will not be performing the surgery. So, I won't get nurse navigator extraordinaire Barbara Clifford back, and I won't have Dr. Schrader monitoring care.

Since that is the case, I decided to go with Dr. Mazj's connections and recommendation at Stanford instead. It was a very good decision. While I'm assured the surgeons at both facilities are excellent, the Breast Oncology Center at Stanford is second to none for organization and overall patient experience. I can already attest to that just from interactions over the phone. Note the contrast: my instruction from Dr. Scrader's office at the time of my referral (early April) was, "If you haven't heard from UCSF by April 30th, then call this number." But it only took 3 days from the time of Dr. Mazj's referral to get a phone call back from Stanford. And in that phone call I heard, "I hope you don't mind. I noticed you're driving from Chico so I took the liberty of scheduling you for both the breast and plastic surgeons on the same day." What a difference!

I am scheduled to meet with Dr. Durbis, breast surgeon, and Dr. Lee, plastic surgeon, at Stanford on May 7th. Stacy will be driving down with me, and I have to say I'm excited. One happy thing I often think about through the fog of pain killers is my post tummy tuck/boob job body. With the weight I have lost before and during chemo, I am already down 3 sizes from last summer. It makes little sense to buy new clothes now though, because I know my surgery will slim me even more. But know this: one way or another, there will be shopping!

By way of explanation for those just joining me, and review for everyone else, I will be undergoing double mastectomy with simultaneous reconstruction using fat from my abdomen to form new breasts. I like to call it Bada Bing Bada Boobs. On the 7th I will find out more about my eligibility for that type of surgery, and a date will be set. They want me to wait a full four weeks after finishing chemo (which I will finish on May 29th) before undergoing surgery of any kind. I can fully appreciate the reason for this. Right now, immuno-suppressed as I am, every little nick or dry patch on my body becomes a long-lasting sore. I can't imagine what carving open my chest and abdomen would do to me under such conditions. So it looks like surgery will be sometime in late June or early July. When I know the date of my surgery, I will also set the date for my Boob Voyage party, aka Ta-Ta to the Ta Tas!

In non-cancer-related news, Dave has done a fantastic job on his MFA project and presentation and will be defending it on Tuesday April 30th. I've been helping him practice for it, and I'm very impressed! He has worked so hard on this and I look forward to hearing that he passed! If he does, we'll be attending his graduation on May 25th. It's been a long road! Way to go Dave! And good luck Tuesday!

Our 16th wedding anniversary is also quickly approaching, and we will be going to Mendocino to celebrate. I have been looking forward to this trip for a very long time. Well, in actuality, I have been looking forward to it for precisely the same amount of time I look forward to it every year. But let's just say the trip is sorely needed. Between MFA stresses and chemo woes, it's been a tough several months and Dave and I truly need to get away, reconnect, and relax. I'll post pictures!

I titled this post "I'm Earning My Stripes." What I mean is that, in contrast to this post where I expressed lots of guilt for having it so easy and being given so much, I can now say cancer truly sucks, despite the wonderful things that have been done for me. And the worst is yet to come. Just three more doses of Taxol, but I'm expecting that lovely cumulative effect to show me who's boss. I do see the light at the end of the tunnel though.

Thank you Jen Coles for bringing dinner Thursday! And thank you Julie Buckley for giving my kids rides! I am grateful to say that, despite my pain, I have still been able to serve in small ways in the last couple of weeks, and that brings me joy.