Karla's Health Update - 6/14/08

Dear Encouraging Family and Friends:

“How the HEALTH are you?” asked my possible-shirttail cousin Molly. (Molly and I were friends in Arizona and Colorado for years and years before we discovered that our great-grandmas were friends and maybe distant cousins in southern Indiana, generations ago!) So, here is how the HEALTH I am … Basically, it has been a challenging but possible time …

Round One of chemo started on May 19. My initial energy boost was from steroids, which only lasted three days. I can see why people like to take steroids! Fatigue is supposed to be the #1 side effect of both parts of my “cocktail,” and that was so true for me on Round #1. I couldn’t concentrate. I couldn’t even figure out how to dust a couple of rooms in the house. I couldn’t finish projects, and starting them was mind-boggling. I felt drugged and poisoned, which was—literally—what had happened. I got discouraged by outside events and by just being tired, tired, tired. I was too tired to sleep. I felt exhausted, unstructured, like an amoeba. I had a few other side effects, but nothing came close to the utter exhaustion I felt for two weeks. Then, one day about a week before the second treatment, I woke up…

Despite extreme exhaustion for 2-plus weeks during the first round of chemo, my blood levels came back up to normal just before the second treatment, and I didn’t require a Neulasta injection to rebuild them. That was a gift! As I listen to other people, I think that most of them do get the shot and then hate its side effects, so I was pleasantly surprised I didn’t need it. I credit most of this to the supplements I’m taking—I sure didn’t feel energetic.

Between sessions, too, my hair fell out, and I am now bald. This was quite an experience. It started to fall out about 14-18 days after the first chemo treatment—so fast I ran out of stores to get home while I still had hair. I washed it another time and then Jack shaved it with #4 clippers, followed by #1, and finally Gilette and a razorblade. I then tried on my free wigs again and discovered I didn’t like them at all without my own hair underneath. (Since my own hair was so thick, I didn’t want to do any real wig shopping until I didn’t have my own hair.) The donated wigs looked very 1960s—the bubble, bouffant look. Think Lawrence Welk or Lennon Sisters or my prom picture from 1968. Yuck. Yesterday, I had them styled, and one of them looks good. It’s hot and tight, so I don’t wear it all the time, but I do wear it in public. That was another thing. People encouraged me to wear scarves in public instead, but I hated how they looked on me. I stood in front of the mirror the first two days and tried on all sorts of styles and combinations. Jack said I was being a junior-high girl and couldn’t understand my hesitancy to just greet the world with my new “reality.” That was not a fun time. I did not feel supported by him (though he has usually been a great support), and he thought I was being ridiculous. I knew I would adjust to it, but not instantly. It took a couple of days, and it did cause instant adolescence. Who am I? Do I care more about what other people think of me? Or do I care more what I think of me? It’s both. I didn’t like looking in the mirror and not recognizing that person! “She” was not the person who usually looks back at “me,” either with “her” 1960s-era wig or bare noggin. Yes, I know, I know. I’m more than my hair. I’m still the same person underneath. Etc. But, I gotta tell you, the mirror was a shock! After I got the wig fixed, “I” recognize “her” (when “she” wears hair), and “I” feel better. As I tried on scarves on Day 1, I had to answer another identity question. I don’t identify myself as a “cancer patient.” Scarves, to me, say “cancer patient.” I always say I “had” cancer and I “am having” chemo. I’m Karla, not “cancer patient.” I care about breast cancer awareness, but my message from this experience has to do with many life lessons. Everyone figures it out a little differently. On Day 2, I wondered why I so hesitated to leave the bedroom without a wig or hat. I finally realized that, having had hair for 60 years, I felt totally naked walking in front of open blinds without hair or a hat. Now, a week later, I’m more accustomed to it and do run around the house “naked” (cranially speaking—don’t rush over).

I just had my second round of chemo on June 10. We saw Richard and Jenny at the treatment, and they are doing very well. Thanks for your prayers for them, too! After this round of chemo, my fingertips are tender and hurting and uncooperative (peripheral neuropathy), my blood pressure spikes way high and then way low, and my skin is blistering on my fingers—but I am not nearly as fatigued at the present. I hope it lasts! I can put sentences together. I can plan. I still haven’t had any nausea! My fingernails may go next, I’m told, so I grease them up regularly, and I’m careful about crowds and infections. My eyebrows may also depart. People tell me, “If you lose your eyebrows, you can just draw them on!” I think: “Yeah, thanks! You have no idea how rigged together I am already!”

I’m trying to live on a schedule that takes better advantage of times when I have more energy. I am also exercising and hope that will defeat fatigue. I love to swim, but I’m supposed to be careful about chlorine and dry skin. It’s over 100 degrees outside, so walking isn’t fun. I pulled out our exercise videos, quickly eliminating the ones that featured skinny ladies with their own hair, firm abs, and no mastectomies. That left Richard Simmons’ “Sweatin’ to the Oldies” and a Country Western line dancing video! Last night, I caught a glimpse in the mirror of a bald lady, held together in places by stuffing and baling wire, who was indeed sweating. Ugh. “This too shall pass,” I say and pray.

About the stuffing and bailing wire … my tissue expander is in process. I have 360 cc’s (12 ounces) of saline pumped into my chest, with 140 more to go. It will eventually be replaced by a permanent saline implant. The tissue expander is under the chest muscle and is near my clavicle—freakish. The plastic surgeon promises me that the final implant will be in the normal position! A few ounces can be added every week, but I am not hurrying to finish the expansion. I need to know if the other breast is healthy. It originally showed lots of microcalcifications, but not atypical ones. There was disagreement among my doctors. It was confusing. We originally thought my lymph nodes were involved, so I opted to focus on quickly treating the cancer I knew I had, having only one mastectomy. Soon, I will need either another mastectomy (if atypical cells or too dense to read) or simpler plastic surgery (to “match” the implant). The plastic surgery is an easier recovery, but I would need annual MRIs and needle biopsies. There are better detection methods on the horizon, but insurance companies do not cover them routinely. I need to give some kind of answer to the plastic surgeon about my plans, but my surgeon doesn’t want to evaluate this until chemo (July or August). So, I’m left with what I’m calling stuffing and bailing wire—and chemo really is my current focus!

To borrow from Molly, how the HEALTH are each of you? Thanks for your great encouragement and prayers. I can’t sign off without saying again that God and the people He sends have been so good to me, to us. Remember—if you want to sweat to the oldies, you know where to come! (Bring a hat.)

Blessings,
Karla