Vanity Versus Reality

Recently I stepped down from the high dose chemo to maintenance chemo. With that new regimen, I dropped the stomach irritating chemo drug taking me from four drugs to three. I lowered the dose on the remaining chemo drug freeing me from the pump and shortening my routine from three days to one.  I also swapped out one targeted therapy drug for a new one. These changes should allow me more family time and work tîme. More normalcy is good. However, as with all chemotherapy drugs, there are side-effects.

The upside is that lowering the dose on the chemo drug that caused my hair to get thinner may mean that it will come back. Perhaps my eyebrows will come back too. Of course this means shaving my legs more than quarterly or bi-annually. That's a small price to pay I think. That's the good news.

The new targeted therapy drug (Vectabix for the Google-inclined) has a rather unpleasant looking side effect - acniform rash. My nurse told me that everyone gets a rash on this drug. So I bought nurse recommended Aveeno body wash and lotion and filled my prescription for doxycycline (acne pills). I was prepared for a rash on my body. I could cover that with clothes. I had my first chemo lite with the new drug a week ago Friday. Monday my skin was getting a little itchy. Wednesday I noticed my face was more red than normal. Thursday I had splotches of the acne-like rash on my face and I started taking the medicine for it. I was not prepared for a bright red face rash. 

When you lose your hair, you have a whole slew of coverage options - wigs, scarves, hats, etc. There is information everywhere you go in the cancer world about how to adorn your bald head. And thank God for those options, by the way. When your face is a mess, your don't have any options. I can't cover my face with a ski mask or a Burka or Hello Kitty band aids. Since this isn't real acne, there isn't much to be done topically. I just have to wait for the doxycycline to do its thing from the inside.  This has troubled me more than I thought it would. 

First, I have to admit my own vanity or pride.  Or perhaps it is simply that I was comfortable in my own skin.  In my late 20's I made peace with my body size and shape, my hair, and my skin.  I was, for better (mostly) or worse who I was.  I had accepted that. Even as I navigated pregnancy and aging, I was still comfortable with my looks.  I made it through the hair loss thing because my hair only got thinner rather than completely falling out.  I cut my hair short and it was barely noticeable.  This new skin ailment has thrown me for a loop and I'm not comfortable with it.  I am generally pulled together and professional when I go to work and generally casual but together when I go out elsewhere. I am do not go heavy on makeup or dress off a fashion runway, but I'm rarely the lady without makeup and wearing yoga pants. Not that I am judging the natural look, that's just not my comfort zone.

Second, I'm reminded of my cancer every time I look in the mirror. And Sara is reminded of it too. We have managed to live as if our life is totally normal between chemo. Blissfully oblivious is something we do well for short spurts. Now I have a bright red nose and bumpy chin to remind us that we're not as normal as we used to be. I might as well be wearing a flashing neon sign on my head. I'm not happy with this.

If there is a bright side to my bright nose, it's that the research indicates that the occurrence and severity of the rash tends to correlate with action on the tumor. While this drug is playing havoc with my skin, it should be playing havoc with my tumors. There's no guarantee that the drug is working, but I'll take positive correlation for now and follow up with data.  I guess I'm going to have to tolerate this trade off for the greater goal of beating back cancer. In the meantime if you see me out in public, compliment my shoes or my purse so I know you're not transfixed on my face. 

Superficially and vainly yours,
Janna the Red-Nosed Cancer Warrior

And the Next Step Is . . .

. . Yet to be Determined.

This week was a bit of a roller coaster with doctor's appointments. In mid-December I had my bi-annual PET scan to note the changes in the cancer masses. I met with a nurse practitioner that week to get my results because my oncologist was on a two-week vacation. And then Christmas came. And then our trip to Florida. And this week I finally got around to seeing my surgeon to talk about the PET results and our next steps in treatment. 

I was expecting to find out if surgery was an option and to make a plan that day. That's not what happened of course. The good news is that my colon and nearby lymph nodes show no signs of cancer. Other nearby organs are still clear too. My liver seems to be showing more activity (cancer metabolism). My lungs showed no activity but the small lesions are still there. Because of those pesky lesions, my surgeon is a hesitant to operate on my liver. In his words, "I only want to operate if it will help you."  Makes sense. We decided that because of my age and the positive response to treatment thus far that we should continue to be aggressive in attacking the cancer. He was going to call my oncologist to discuss treatment options other than surgery. Mom and I left his office still not knowing what would be next but expecting resolution from the oncologist the next day.

When I met with my oncologist, I relayed information from the surgeon because (of course) the two had not talked. With surgery off the table for now, I am left with radiation and chemo as available options. We talked about going back on the high dose chemo for a bit and then moving to low dose maintenance chemo. He referred me to a radiology practice to find out if I am a candidate for radiation. I left his office with an appointment for a radiation consult and a back up plan if I am not a candidate for radiation.

I had ideas and tentative plans for treatment but no clear path. As I drove to my office mulling over the information and various conversations of the past 36 hours, I prayed for wisdom and guidance. I thanked God for getting me through the past 14 months and for the positive progress, and I gave my future treatment to him to resolve. 

Two hours after I left the oncologist's office, I got a phone call from him. He had connected with the surgeon who has been conferring with other surgeons to see what might be possible for me. I was told to stay tuned. So I remain in a state of limbo. I will meet with the radiation doctor next week to see if radiation is an option. I'm waiting to hear from my surgeon to see if surgery is an option.  I hope that things will become clear in the next week, and I will be on to the next leg of this journey.  Until then, I occupy myself with things I can control as work goes on behind the scenes.  Stay tuned and pray for the wisdom and insight of my medical team.