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. 

End of the Year

Most people start the new year with at least one resolution - lose weight, save money, quit smoking or some other bad habit.  I had a goal.  It was simple, and I only had one.  My goal for 2016 was to end it healthier than I started it.  When you make a goal, you need to have a set of actions to achieve it otherwise you are just engaging in wishful thinking.  My goal was different than most in that I have very little control over the actions necessary to achieve it. My actions include trying to remain positive, praying, eating healthy (-ish), and showing up for chemo.  The rest of the actions are required by my body to follow my will - keep up your immune system, avoid germs, respond to chemotherapy, get enough rest, and limit stress.

I am happy to say that the goal has been met.  I am healthier than I was this time last year. I've completed a year of chemo treatment and survived the side effects.  I managed to get through the January-February cold and flu season without getting sick at all which was a minor miracle considering Sara attends school with 800 mini Petri dishes (or kids).  My only health hiccup was the cold I caught a week before Christmas, but it was short lived and didn't escalate into anything more serious.  My December PET scan indicated no cancer metabolism in my lungs which is great news.  The other masses are much smaller having responded well to the chemo.  I'm thrilled to have my health moving in the right direction.

I cannot take much credit for this year's success.  I had a lot of help from modern medicine, a large prayer team, and the grace of God. The treatment path for 2017 is yet to be determined.  However, with the same team in place I expect to be even healthier at the end of 2017.  

The Waiting is the Hardest Part

The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part
     - Tom Petty and The Heartbreakers

I'm terrible at waiting.  I get antsy and anxious.  I tend to jump ahead and guess what's coming.  I'll use any small thing as an omen.  Good parking place = good luck. Long wait = bad news they're trying to sort out.  Good nurse stick on my blood draw = easy chemo.  For a scientist, I'm awfully superstitious.

I had a PET scan on Monday, and Wednesday I had my follow up with the nurse practitioner (NP) to find out about the scan results.  Naturally, I was anxious.  That morning I was running late (bad omen), but I caught a lot of green lights on Kingston Pike (good omen). My parking place was decent (neutral).  There were no annoying loud-talking people in the waiting room (good).  The nurse stick was easy (good). Then I had to wait about 40 minutes for the NP (worse).  It wasn't my favorite NP, Lisa, that walked in (bad). I've almost worked myself into a tizzy before she starts talking.

The news was mixed but generally good.  I think.  The lesions on my lungs are now showing no activity (no cancer metabolism going on there).  That's good.  It's what I've been praying for since my last scan in June.  The mass on my liver is more active but generally the same size as the last scan.  My tumor marker was up but not drastically so.  It was 1.5 in November and 4.9 in December.  Below 3 is normal.  I extended my chemo to every three weeks in October and November to accommodate travel plans. I guess it is possible for the change in schedule to impact the tumor marker number, but I'm not a doctor.  This is cause for attention but not panic.

I will see my surgeon in three weeks and my oncologist again after that.  Three weeks! That's the earliest appointment I could get. That's three weeks to speculate, worry, and stew on it.  Three weeks to generate a proper omen scorecard.  Or depending on my mood, it's three weeks of freedom without chemo or a doctor's appointment.  I will try to focus on the latter and keep the worrying and tallying at bay.  Luckily, I have the distraction of the holidays and lots to do at work.

God is teaching me patience, and I'm a slow learner, apparently.

Life Between Treatments

One of the biggest adjustments of my life was becoming a mother.  I went from having minimal schedule constraints to having a cuddly 6 lb. dictator telling me what I was going to do next.  I quickly realized that my new mom life would be broken up into 2-3 hour intervals because that was the time I had between feedings - feed, diaper change, soothe and snuggle, nap, and repeat.  In between I had 2 hours to eat, sleep, shower, run errands, etc. Most of the time I opted for sleep.  That phase didn't last long, and it was 10 years ago.  However, I still remember what a life change it was for me.  

Now chemo has put my life on a two-week schedule - chemo, recovery, rest, feeling okay, feeling good, feeling nearly normal, and repeat.  My typical chemo cycle starts on a Wednesday with chemo for half the day and then a nap.  Thursdays if I feel okay, I'll run errands, do a few things around the house, or go shop with my mom.  If I'm feeling puny, I stay home and nap.  Usually on Fridays I'm exhausted.  I don't sleep well because of the steroids and the fact that I'm wearing a stupid fanny pack with my pump in it.  Saturdays are generally as lazy as I can get way with.  On Sunday, I'm perking up and getting ready to go back to work on Monday.  I basically lose 4-5 days each cycle, and then I get 9-10 relatively good days that follow.  The weekend before I start the next cycle is usually really good.  I have more energy and feel like doing things.  I feel almost like someone who doesn't have cancer.  

This has become routine for me after 17 treatments.  I was pretty bummed out by the thought of taking chemo "indefinitely".  Who wants to spend the rest of their life on this sick-to-get-well roller coaster?  However, after a few days of wallowing, thinking, praying, and sleeping, I decided that I need to focus on the positive and focus on living.  I have been putting off the big things until "I feel better" as if joy is something that should suffer from my chronic procrastination. 

I've made some changes in my life and my attitude that will allow me to make the most of those well days between treatments. On thing has been to pare down our stuff.  I don't want to spend my weekend cleaning the house, so I've been streamlining our household so that it requires less of my time.  Sara has been chipping in on chores so that we can get stuff done in less time.  I have also pared down our commitments.  Sara still has her activities - swimming, girl scouts, drama, etc.  Those things are important to her as they represent normalcy.  I want her to be able to hang on to normalcy as much as possible.  Our life may have been turned upside down, but I don't want this period in her childhood to be marked by isolation, boredom, or anger about missing out.  In order to manage all her activities, I must either take on less or delegate more in my role on those activities.  In order to do this I had to abandon guilt of being the slacker mom and the control of having things my way.  Both of these were hard to let go.
 
I resolved to use my well time for fun, joy, adventure, or just quiet peace at home with Sara. I'm planning a few weekend trips for Sara and I this fall.  Plus I've booked my flight and am planning a rambling geologic and sightseeing road trip to Wyoming over fall break. This one is for grown ups - just me and Shawn.  Having something to look forward to helps me think and talk about life as if I'm a normal healthy person.  It helps me to keep moving forward.  I want to spend my good days being as normal as possible.

Indefinitely

I have chemo again this week, and I will be starting on a new drug this treatment. After 13 treatments with the platinum-based drug, the neuropathy in my fingers and toes became too much.  It will go away eventually but it may take months.  According to my oncologist 10-12 treatments is the norm for that drug.  I made it through 13 before raising the white flag. I've had genetic testing to find out if I had a genetic marker for colon cancer.  Negative.  That's good news for Sara.  It also means that there are more treatment options for me. If the latest drug doesn't work or I cannot tolerate the side effects, there are others.

People often ask me how many treatments I have left.  That's a natural question. We all like to be able to see the light at the end of the tunnel.  I have asked that question of my oncologist too. The answer, "indefinitely". Sigh.  I usually end up talking to the nurse practitioner more than the oncologist.  She's got more time and usually is a little more knowledgeable about the practical aspects.  She is just the kind of no bullshit woman that I like.  When my oncologist said "indefinitely", she added "or until it quits working".  Ouch.  The truth hurts, but I wanted to know where we were going.  So when Sara gets emotional and wails, "I feel like you are going to be in chemo forever", she may be right.  It feels that way to me too.

In the book The Death of Cancer, the author writes about advances in cancer treatments in the past 30-40 years, and where research and treatment are going next.  Through the advances in modern medicine and research, many cancers are now being managed as chronic conditions (like diabetes or hypertension) rather than terminal illnesses.  For example, I didn't know until recently that some forms of chemo can be administered in pill form.   I'm trying to view my illness as a chronic condition to be managed. I try not to think of the terminal illness aspect too often.  The chemo is fighting back the cancer, and so far it is winning this battle.   So I keep doing it and hope that it keeps working, and I pray that it is able to fight back to the point that I can have what's left removed with surgery.  Until the next waypoint, I keep plodding forward. 

There Is Still No Road Map

I've said before that I'm a planner and an organizer.  I like to know what's next.  I like to put things down on paper to make it official.  Cancer treatment, like a defiant toddler, refuses to follow any plan or schedule.

I met with my surgeon today.  I have completed 12 rounds of chemo and had a PET scan this week.  I was hoping to find out a plan for surgery today.  Mother and I had our calendars out ready to mark everything down and make a plan.  Evidently the plan of attack is so complex it will require a room full of oncologists and oncological surgeons to sort it out.

The good news is that the chemotherapy has been very effective at shrinking the masses. All have been considerably reduced in size.  Everything is still operable as it was in December only now it's smaller.  The complicating factor is the spots on my lungs. In December, after my first PET scan, we found out that there were spots on my lungs.  My oncologist was not concerned about them at the time because they were small and showed low activity.  He wasn't even sure they were cancer.  My recent PET scan showed that they have shrunk and still have low activity which confirmed that they are indeed cancerous. These small low activity spots complicate my treatment.

Essentially my surgeon doesn't want to focus on one organ with surgery while ignoring another organ and possibly allowing the cancer to grow again.  I cannot take my usual chemotherapy while preparing or recovering from surgery.  It's a complex puzzle that will require some thought to come up with a plan.  My surgeon, my oncologist, and their peers will be meeting to discuss my case and determine a plan of attack.  If they cannot come up with a consensus on what to do, I may be sent for a second opinion at Vanderbilt.  As a scientist, this feels comforting. I like the idea of lots of experts discussing and debating to decide the most effective course of action. Logical and methodical is the norm for us Vulcans.

The good news is that my cancer has responded very well to chemotherapy, and surgery is still an option.  My cancer is still treatable. How exactly they will execute treatment is still being worked out, but I feel that I'm in good hands.  The path ahead will become clear soon and I'll have my calendar ready to mark down all the dates.  Keeping the faith.