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.

Looking Back After #12

I finished my 12th and (hopefully) final treatment of full chemotherapy this week. It's likely that I will have to do maintenance chemo after surgery. But compared to what I have done already that should be much easier. It will be one chemo drug instead of four, one hour treatment instead of three days, and possibly less frequent too.  Compared to the stories I've been told by other cancer patients and the people I see at chemo, I feel like I had it pretty easy. My side effects were mild to moderate and were more annoying than debilitating. The odd thing is that the side effects and intensity varied between each treatment. It was like spinning the wheel on Wheel of Fortune. I never knew what I would land on. Fatigue and cold sensitivity in my mouth have been consistent, but the rest have varied with each treatment:

Heartburn

No appetite

Tingling fingers

Numb fingers

Cold sensitivity in fingers

Tingling toes

Clumsiness

Dry mouth

Nosebleeds

Hair thinning

Fever

Chemo brain

Missing from this list is nausea and vomiting. That is a blessing and has a lot to do with my positive attitude. I hate throwing up. So much so that I can generally will myself not to. If I had to go to chemo every other week knowing I would be throwing up and downing Phenagren, I would have been a much crankier patient.

The first chemo was pretty rough. I was exhausted from the previous week's appointments, scans, port install, etc. Plus I was mentally overwhelmed by everything. I think I slept for three days. After that treatments got easier because I knew what to expect, and the symptoms were milder too. 

Knowing what to expect and being able to plan for it helped Sara too. She knew Nana would be here to help, that there would be a trip to Sonic and likely shopping, and that it would pass in a few days.  She didn't like to see me sick and weak but she realized after a few treatments that it wouldn't last long. She has had emotional moments and worried this was "going to last forever". Six months is an eternity to a 9-year old. But mostly she has been a trooper through it all. Her strength has helped me stay strong and I'm sure it goes the other way as well. 

I met with my oncologist last week and planned for a PET scan to evaluate the success of treatment thus far. Then I will meet with my surgeon again. We will discuss all the details I was too stunned to think about back in December. Honestly, the only thing I remember from my first meeting with the surgeon is the two-hour wait in the waiting room and hearing that the tumors were operable and my liver will regenerate after surgery. And I got to see my CT scan which was cool. This time I'll have a list of questions. I'm ready for the next phase of treatment and glad to be done with chemo if only for a little while.  

All in all, things look good, and my heart is full of gratitude.

I like big data and I cannot lie

You other nerds can't deny

That when a girl walks in with a big spreadsheet

And a pie chart in your face

You're stunned, wanna put your glasses on

I like data because there is something tangible and reassuring about watching results.  I've accumulated quite a bit of data during my treatment.  As I go through the treatment process, I'm tracking and counting and marking things on the calendar. Chemo #11 was last week and dutifully marked on the calendar. I only have one more treatment to go if you're following along at home.  Every session, I get blood taken to make sure I'm healthy enough to take a drug cocktail that makes me sick and better at the same time. They hand me my printout with my numbers to scrutinize.

The numbers I'm watching are my platelets because if they drop too low I cannot take my next chemo thus disrupting my carefully laid out schedule.  I'm also watching my CEA (carcinoembyonic antigen) or tumor marker. According to my doctor, this is an indication that the chemo is working to attack the tumors and that they are not growing. The real measurement of progress are CT or PET scans to measure the size. However, the blood test is far cheaper and quicker than the scans that only happen every 3-6 months. 

Because I like numbers and seeing results, I made a graph of my CEA progress. Doesn't everyone like a pretty graph? 


The last CEA test result was 2.0 which is in the range of a healthy person (less than 3.0). I'm normal!  Well, as far as my CEA goes.  The rest is debatable.

Chemo Brain

KNOXVILLE, TN - Chemo Brain, also known as mush brain or fluff brain, affects millions of cancer patients per year. It causes memory loss, forgetfulness, misunderstanding directions, slow mental functioning, and mixing up numbers. The phenomenon is thought to be caused directly by the combination of chemotherapy drugs and impacts only the patient. However, a recent study by Peevler and Norris published in The New England Journal of Medicine (2016), indicates that the ailment may be spread to others. Research indicates that proximity and exposure times are key factors that govern the severity of symptoms. For example a person who interacts with the Chemo Brain Patient (CBP) daily will quickly see their ability to remember details and short term memory dwindle whereas a person who interacts with the CBP weekly might only experience minor forgetfulness.  Researchers did not evaluate the impact of digital interactions through text messages or social media.

Researchers caution against avoiding the CBP in their life but instead suggest developing their own mental fitness regime. A mental fitness regime is also helpful for the CBP.  Boosting mental fitness includes using notes as reminders. A simple "Do you have your keys" on the door or "Are you wearing pants?" on the closet can avoid disaster. Developing conversational habits that encourage both sides to recall a memory (i.e., do you remember how old you were when you gave up eating paste) or explain a process (i.e., what is you preferred method of boiling water) can help both parties. Cultivating the ability to listen to the same story five times without letting on that you know how it ends is a helpful skill that CBPs appreciate. Although not quantified by this study, researchers believe that a sense of humor helps both the CBP and those close to the CBP mitigate the stress associated with chemo brain until proper mental functioning returns.

Disappointment or Opportunity?

Today, for the second time in two months, I was delayed in my chemotherapy schedule.  I'm scheduled to go every other week, but it all depends on my platelet count. The ideal is 100 or over but we squeak by when they are around 75.  Today they were 64. That is a no go.

I'm disappointed because I want to stay on schedule. I want to be able to plan this out to the end of this round which is only three treatments away. I want to get past it so I can focus on summer, preparing for surgery, and envisioning what is ahead after we get past the world of cancer treatment.  But disappointed or not, I have no control over this.

There is nothing to be done for the platelet count.  Your platelets regenerate every 2-3 weeks on their own.  They will not be rushed with steak, sunshine, rest, wearing red, or any of the other things I've tried.  The odd thing is that I don't feel run down or depleted.  In all honesty, the day I go to chemo is usually one of the days I feel the best.  Most chemo patients will tell you that about the time they start feeling better, it's time for the next cycle.  I generally have a week or so of feeling good between treatments. I had enough energy to survive this past weekend of performances of the play Sara was in.

The last time I was delayed was in March.  That delay meant that I wouldn't be coming off chemo the weekend of Sara's play which I took as a huge relief and a blessing.  Working and watching the play through three performances is hard enough without the added drag of recovering from chemo.  This time it means that I have an extra week to enjoy being with Sara.  The past few weeks have been full of play preparations and after school stuff.  We have no after school activities this week.  Because of the testing going on at school, Sara has no homework this week.  And now I'm feeling good and have a break from chemo.  This is a perfect storm of school year bliss for me. For both of us. So instead of feeling bad from chemo, I get to enjoy unscheduled time with Sara.  

Cancer is teaching me, or rather forcing me, to be more flexible and less scheduled.  I'm trying to view these delays in a positive light.  The delays are disappointing because I just want to get to the end.  I made a promise to Sara when this started that when I felt good, we would do fun things. That we wouldn't let cancer steal our joy. So I'm viewing this extra week as a free week for spontaneous fun and restful nights.  

Memory and Reason

It's funny what your brain will conjure up in the wee hours of the morning when you should be sound asleep. It's 5 am and I might as well call it 6:30 because I'm not going back to sleep.

There so much about college that has drifted off into the recesses of my brain but for whatever reason, this sticks out.  In college I worked in an office in downtown Athens. I was 21 or 22 and working part time. I worked for a small business - a sole proprietor with about 5 other full time employees.  That job taught me a lot about professionalism and work ethics. And resilience when life throws a monkey wrench into your well functioning life. The business owner was about 35 with one-year old twin boys. I got to know his wife who was diagnosed with colon cancer that year.

I remember vividly the conversation when he told his small office staff. He talked briefly about their plan for her care - help from family, chemotherapy, surgery, etc. Then he shifted gears to the practical - the business had to keep going. It provided their sole source of income, health insurance, and jobs for five people. He told us that he would do what he needed to do for her, but he also had to be present at work.  In a way, that was for her too. It wouldn't help if their income stream dried up while she was sick.

I remember seeing her during treatment. Much like me she didn't lose her hair but opted for a low maintenance short cut.  I remember baby sitting the boys when she was sick and her family wasn't available to help.

I think about all this in the early morning darkness, and I wonder about her. I moved from Athens nearly 20 years ago. But alas, there is Facebook. I looked her up. There she is smiling with her husband and two grown boys. It made me smile to see them all together smiling back at me from my iPad. She is a 20-year survivor. She has been able to see her kids grow up. It gives me hope that I'll be there in 10+ years with my smiling grown up kid.

Good is Good Enough

I got good news from my oncologist on Tuesday. It wasn't great or miraculous news, but it was good. It wasn't what I was expecting though. I was looking forward to a break from chemo and surgery to remove the masses. When this journey started my oncologist recommended six months of chemo and then surgery. My surgeon wanted three months of chemo then surgery. I liked his plan better so that's what I was hoping for. But that is not what we are doing. My mother told me that I may have had my expectations too high. It's possible that's true, but I don't want to lower the bar here. I want to keep expecting great and possibly even miraculous results.  Instead I think I need to reframe my assessment of my progress.

Here is the data. I have a copy of my CT report comparing the pre-chemo CT to the 3-month treatment CT.  I read it. Then re-read it. Then read it while my mom googled medical terms. I think I've got it. The report used the term "markedly reduced" to describe the mass on my liver. My oncologist seemed happy with this. I did the math and found that it has shrunk by about 25% with six treatments. That number sounds good to me. It's still too big for surgery at this point. So we do more chemo and hope for a similar or greater reduction. The lymph node that showed signs of cancer prior to chemo appears clear now. My bladder, uterus, and ovaries "appear unremarkable" which is CT speak for no visible signs of cancer.  All good news.  The cancer we knew of is shrinking and there isn't new cancer popping up. The chemo is working its cytotoxic magic in my body.

Chemo #7 started this week. I should finish up #12 right as Sara gets out of school for the summer. On the morning of chemo #7, I was a big whiny baby about having another three months of this. When Sara whined that she didn't want to get out of bed.  I crawled in bed with her and said "I don't wanna go to chemo.  They're mean to me and make me feel bad."  After a few minutes of mutual whining, we decided we could not live in bed so we got up. I'm quite sure after a 2-3 month break from chemo for surgery, I would be an even bigger baby going back. As my mom and Shawn pointed out we've got momentum behind us. Plus we have a system down for this chemo thing. Day 1 we drop Sara at school, head to McDonalds for a bacon egg and cheese biscuit (high calorie / high protein diet), arrive at the infusion center for my appointment, survey the room for the best seat, get hooked up, recline, podcast, nap, and leave with my pump and fashionable fanny pack. My mom will read, crochet, or go shopping if the waiting room chatter is too annoying. Day 2 is loafing or low effort tasks. Day 3 I finish up by getting unhooked from the pump and sleeping the rest of the day. On Day 4 and 5 I rest a lot and slowly return to normal so I can go back to work on Day 6. And so it will go for five more treatments. 

I'm hoping that I'll be ready for surgery after the 12 treatments are complete. I know I will not be completely done with chemo because I will likely have to do clean up / maintenance chemo to ensure everything is gone. I'm just hoping the biggest chunk is over by mid-May and that my body keeps tolerating it and responding well. 

There is No Road Map

When you are dealing with a serious illness such as cancer, you have to become comfortable with uncertainty.  If you are person who can go with the flow all the time, you will be much saner than me.  I don't like uncertainty.  I plan.  I like my calendar.  I fill in boxes with activities, to do items, appointments, etc. Knowing what comes next is comforting. It helps me sleep at night knowing what the next day or the next week brings. 

With cancer treatment there is no firm plan.  I started at Point A (stage IV cancer), and I'm hopefully headed toward Point B (cancer in remission).  In my mind, there should be a road map - follow this path, stop at these milestones, take these exits, and you will find yourself at Point B in a certain amount of time.  This is a plan I can put down on my calendar and mark off days to reach Point B. Only it does not work like that dealing with the unpredictability of cancer, pharmacology, and the human body. There is not a road map at all.  It's more of a general direction that can be reached in a variety of ways.  Point B is over yonder. Head that way and see what happens.  Different than the precision of a road map, it is more like making your way across a stream by stepping on rocks.  You don't know if you will be able to make it across on the path you can see from the stream bank. You have to get in the stream and start taking steps to see where the next step will be.  You have to have faith that the path you are on will lead you to where you want to be.  You have to listen to the guide who has seen many people across the stream before. You have to be willing to stop and look around a bit for the next step.  You might need to backtrack and start across a different way. You may make a misstep and land on your ass in the water.  Or worse - get washed down stream. 

I'm somewhere in the middle of the stream now with six chemo treatments behind me. My oncologist and I are stopping soon to reconnoiter and survey the path ahead. I have a CT scan coming up and then we'll talk about which step to take next. I am hoping for a break after chemo #7 so that I can get healthy for surgery. I will sit on my rock in the middle of a swirling stream acting like life is normal for a while. I'm looking forward to that.  I am ready to write in some normal time on my calendar.  

Stages and Statistics

"In God we trust.  All others [must] have data."  

     - From The Emperor of All Maladies A Biography of Cancer

Cancer treatment is all about numbers, data, and statistics. There is a steady collection of data every visit - white blood cells, red blood cells, platelets, blood chemistry, weight, symptoms, etc.  Data is collected, charted, and scrutinized at every turn and the data determines the next step.  At each treatment, I get a printout of my blood work.  I can check if I'm moving up or down.  For me, there is something comforting and concrete about data. With it I can see what's going on inside my body and understand the next steps.  I can look at progress from my pre-chemo self.    

This week, I've been worried about platelets.  The oncologists want your platelets number to be above 100 otherwise you risk not being able to clot if you were injured.  In other words, below 100 you are too sick to be made sicker with chemo.  At my last treatment my platelets were 108.  I barely squeaked by.  So I'm hoping and praying that they come up before my next treatment on Wednesday. Between treatments, I've tried to eat well, get some fresh air, move around, and pray that my body is doing its thing to generate more platelets.  There is really nothing to be done for this but pray.

Over the course of treatment of millions of patients, data are converted into statistics. Statistics are everywhere in the cancer world - percentages of getting this side effect from a certain chemo drug or having this allergic reaction, survival rates, surgery success rates, etc.  And then there are anecdotal stories - data points without context. I've heard stories of survival from my type of cancer and others. I like hearing that someone made it 10-20 years after colon cancer. There is hope in those numbers. 

The more grim numbers are the survival rates.  I have stage IV colorectal cancer, and I do not talk about my chances of survival. In fact, I avoid thinking about NOT surviving.  My parents have not asked about 5-year survival percentages. I assume they can Google it if they want to know. Only a few friends have asked. My answer is "I don't know", and I am being honest.  Not once have I asked my doctor for that number.  I suspect that the 5-year survival rate is not high because stage IV of any type of cancer is pretty advanced.  But I also know that these numbers are not definitive either. Survival rates are an average of years of survival from people of various ages and health. I am an individual person not an average. I'm a 42-year old in excellent health - cancer notwithstanding - with a robust immune system and the stubbornness of a herd of mules. Survival rates only apply to me in the abstract. I refuse to give it power by talking about it, and I firmly believe that I'll be a 5+ year survivor - a data point in the win column.  

Random Thoughts from the Chemo Room

Since I have four of these visits under my belt and will likely have a dozen before it's over, I thought I would share my observations and advice should you ever find yourself in this spot.  I hope and pray that you don't.

This photo is from my first chemo treatment.  I had 12 different drugs that day.  I think I won that round for most bags of anyone in the room.  If winning is such a thing here.

Science is Important

I've talked to people who are 10-, 20-, or 30-year survivors of cancer which is very encouraging.  My experience with cancer treatment is radically different from theirs.  Over the years researchers have made huge advancements in creating new chemotherapy drugs, matching the drug cocktail to the cancer, tailoring the dose to the patient, and minimizing (although not eliminating) the awful side effects.  I'm not sure a true cure to cancer is possible, but I see so much progress that it gives me hope for the future  - early detection, improved treatments, and better long term survival rates.  I cannot imagine what will be available to my now 9-year old when she has to start colon cancer screening at 32 years old.  Hopefully it will involve a blood test or some other non-invasive diagnostic. Not everyone is cut out for scientific research but all of us can support organizations and political candidates that further scientific research and support science education.  

"In the face of overwhelming odds, I'm left with only one option, I'm gonna have to science the shit out of this."  - Mark Watney from The Martian.

Choose your seat wisely

I am in the chemo room for 4-5 hours every other week. That's a large block of time to sit and think. Based on my observations, my introvert nature, and my desire not to chit chat, here is my ranking of the best seats in the house:

1. Next to the younger person with the iPad or laptop and earbuds.  They don't want to talk and will gladly leave you alone.

2. Next to the snack basket.  You need your strength.  Eat some free Cheetos.

3. Next to the old guy.  He's not going to talk at all.  Within minutes of kicking back the recliner, he will be asleep.  His snoring is like a white noise machine.

4. Next to the little old lady with her knitting, crocheting, or worn paperback.  She's going to smile and maybe say hello then she is going to busy herself with her craft or book.  

5. The one with an empty seat next to it.  This seems like it would be the best option, but it is only a good option if you brought a friend or relative with you to park in that seat.  They will likely be booted out of the seat for another patient later, but in the meantime, you've got someone you like next to you. The downside is you have no control over who sits there next.  This is a risky move.

6. Next to the bathroom.  Seems like a good idea to sit close considering they are putting what seems like gallons of fluid into your body that you will need to get rid of.  But you really don't want to see the coming and going of each patient.

7. Next to the middle-age lady who brought her friend, daughter, or sibling.  Her partner will not be shooed from the room even if it means sitting on a horribly uncomfortable plastic chair for hours.  They are going to make small talk the entire time.  Earbuds are your only hope. 

There is always someone in worse shape than you

In our consumption-driven society, it's easy to notice people with bigger houses, nicer cars, more expensive clothing, and more exotic vacations.  It's tempting to succumb to the better life syndrome.  It is just the opposite in the chemo room.  I'm on the young end of the age spectrum in the chemo room. In fact, I've only seen one patient that is close to my age.  There are patients who are on oxygen, patients who bring in a gallon-size Ziploc bag full of prescriptions, patients who roll in on a walker or in a wheelchair, and patients who are obviously very sick and very miserable.   It's pretty easy to find people to add to your prayer list.   It's pretty easy to see your situation in a different light.  It's pretty easy to find gratitude here. 

Tough Conversations - Telling Sara

My mother and I decided on the day of my diagnosis that we wouldn't tell Sara the full story until we knew more. We had too many unanswered questions ourselves, and it would only worry Sara until we found out more.  As tests and things were happening, I was explaining those to Sara but I wasn't really sharing results or news.  Just that I needed to do more. She knew that I had a colonoscopy and a CT scan.  Sara is curious and observant.  She likes knowing how things work so she had lots questions.  Medical diagrams and CT machines were Googled, and I explained the digestive system to her.  We had a good laugh at this picture that came up on our Google search for CAT scan.

My colonoscopy was on a Monday.  On that Friday I had a CT scan.  The following Tuesday a nurse from the GI doctor called to schedule an appointment for me to talk to the doctor with the cheery and seemingly innocuous words, "He saw something on your CT that is going to change your treatment plan."  Immediately I started worrying.  I was at his office the next morning.  As I expected, the news was not good - two tumors on my liver and a spots on lymph nodes.  I walked out with another appointment - this one with my new oncologist.  The next day was Thanksgiving so I had to sit on this news a little bit longer.  I told my mom, and we agreed that I would talk to Sara after the holiday but before the end of the weekend so she would have time to process and talk to me.  We got back from my mom's on the Friday after Thanksgiving, and I talked to her that night.

This was without a doubt the most difficult conversation I've ever had with anyone.  I had run it through my head at least 1000 times in the past 10 days. And yet when I was sitting next to her the words just kind of tumbled out in random order.  I can't remember exactly how it went but I remember her reactions and some of my responses.  I told her that I had cancer and that I would be going through chemotherapy and surgery.  I explained that chemotherapy is a series of drugs that basically wage war inside your body.  The drugs are after the cancer but they hit other things too.  That internal war causes symptoms like nausea, hair loss, and tiredness.  I explained that I was going to feel pretty rough at times, but I didn't want cancer to steal our joy.  I assured her that she will still get to do her thing - drama, swim, Girl Scouts, friends.  And when I'm feeling good, we are going to do fun things again.  I would do my best to keep our life as normal as possible but there would be a lot of ups and downs. 

We talked about God and the role of faith in these hard times.  I explained that so much of this was out of our control and that we had to have faith in God that I am in good hands with my oncologist and my surgeon.  And I trust that God will meet our needs and be with us always.

Her next question was inevitable but felt like a punch in the stomach.  "Are you going to die?"  My answer was an rambling existential explanation of life and death that went something like this:  "We're all going to die.  That's part of life.  Am I going to die from cancer?  I don't think so.  I think with treatment and surgery, my chances are good.  I want to be here to see you graduate high school. And then college and everything else. I have a lot of reasons to fight and be strong."  She's crying.  I'm crying.  This is the first time I had really cried about this.  I was relieved to be able to get it out with Sara.  We talked a lot about our worries and fears and back to faith.  I wanted so much to promise her that everything was going to be fine but I didn't.  I don't want to give her false hope or promise things I have no control over.  I have always tried to be honest with her in a way she can understand. 

After we got hold of our emotions, Sara shifted into practical mode asking questions and giving me to do items.  "Who have you told? What do I tell my friends? I want to see Miss Cookie (her therapist). You need to tell my teacher."  We talked about sharing the news with our friends for a long time. Who to tell, when, how, what to say.  When you are an only child, your friends become almost like siblings, and those relationships take on greater significance.  Sara has a tight knit group of friends. She had definite ideas about who to tell and how to tell them. She made it clear this was her show.  I got the message, back off momma.

Telling her on Friday and having the weekend to process was the right decision. We spent the weekend hunkered down at home together. Sara turned down invitations because she wanted to be home with me. We put up the Christmas trees, enjoyed being together, and tried to have normalcy. By Monday we were rested, refreshed, and ready for the next steps.

Since our initial big talk we've had lots of little talks about it.  As expected her feelings have been all over the map - mad, sad, scared, and worried.  She gets frustrated that I can't do stuff I used to do like play in the snow.  The cold is hard on me because of the neuropathy in my fingers.  Getting milk out of the fridge causes my fingers to tingle a bit so snow sledding is out for now. I understand why she is mad and frustrated. Her life is different now and it isn't fair.  If I'm completely honest, it's bullshit. She's 9 and I'm 42.  I can't get mad because I know it doesn't help.  But that's me.  Sara can get mad. She's entitled to all of those feelings, and I make sure that she knows her feelings are valid and understood.  The anger and frustration doesn't happen often and it passes quickly.  Most often she is scared or worried.  She comes from a long line of worriers on her dad's side of the family.  She has a caregiver's heart and a thoughtful nature from that side too.  She's a great helper - emptying the dishwasher, sorting laundry, picking up the house.  She offers to get me water or snacks if I'm resting. There is a reason her dad nicknamed her "Little Sweetie". The beautiful thing about being 9 is the short attention span.  She gets emotional and then it's time to check her iPad, go to swim practice, play outside, or watch tv.  All in all I think she is coping very well - grades, behavior, and sleep are all good.  She talks about it openly not just with me but with her friends' moms, her grandparents, and family. She shares with her friends who are supportive and love her dearly.  She amazes me with her strength and ability to keep on rolling with whatever comes her way.  She is my motivation and inspiration. I hope that I am the same for her. 

November 16 - The News

"You have a mass and it looks like cancer. We took a biopsy to be sure."

And with that the fog descended. The next few days and weeks would pass in a blur of doctors, waiting rooms, testing facilities, and questions. 

In October I was at my family doctor following up on my blood clots from the summer when I mentioned that I was still having digestive system issues.  He didn't think it was serious but he sent me to a GI specialist for a colonoscopy. My mom was with me on the Sunday before my appointment for my liquid diet.  We took Sara to school and headed to my appointment on Monday morning. The procedure itself isn't that big of a deal because you are asleep for it. Sitting in the waiting room and realizing you are the youngest person in the room by decades was kinda weird, but that was shades of what was to come.

It was my GI doctor who delivered the news after the procedure. I'm thankful that my mother was in the room when he explained everything.  My mother is level headed and practical, and she makes me laugh.  Between hearing the word cancer and the hunger from 36+ hours without solid food, my cognitive function was at its nadir. He said, "Things are going to happen pretty fast now." In my 42 years, I've learned that when a medical doctor says those words, they mean it. These are not people prone to hyperbole or soap opera type drama. Things did happen fast.  The nurse came in to set everything up and I was too dumbfounded to do anything but nod.  I walked out of the office with appointments with a surgeon, an endoscopy and ultrasound, and a CAT scan. Thus began a trend of trading one appointment for two or three more.

As we walked out of the office shell shocked, my mother said, "You need to think about what you are going to tell your Daddy." I nodded.  I said, "what am I going to tell Sara?"  The rest of the day my head was spinning with questions, things to do, plans to be made.  I knew right away that I wasn't ready to tell Sara.  Mom and I decided that she would deal best with facts so we would wait until we knew more before we told her.  It was also 10 days before Thanksgiving. I couldn't tell my friends yet.  I didn't have the words.  I was trying to act normal even though I was sleepwalking through my days and lying awake with my mind spinning at night.

The Beginning

When this illness saga began, I said I wasn't going to post about it Facebook.  I'm kinda proud, independent, and private.  I think what I meant was, I'm just not ready to share with the world yet.  I wasn't even ready to share it with my closest friends.  It took me a bit to do that.  I'm writing now partly to share progress and to help me remember the details, but mostly, I'm writing as a way to really process what has happened and is happening to my body, my brain, and my life. I'm a thinker more than a feeler so my first reaction was practical not emotional.  I have feelings, but I need to think about them awhile to know what they are.  There have been a lot of thoughts and feelings to process. Things came at me so fast at first that I couldn't feel or even think too much.  I could only react and follow directions to the next appointment or test.

  

Two months ago, I went in for a colonoscopy and received news that I had colorectal cancer.  Since then I've had a MRI, a CT scan, a PET scan, an endoscopy and ultrasound, a port installed, three chemotherapy treatments, and countless appointments with either my GI doctor, my oncologist, or my surgeon.  In the midst of all that we celebrated Thanksgiving, Christmas, and New Years.  It's enough to make any sane person's head spin.  Luckily I was not entirely sane to start with.

After three chemotherapy treatments, I can say I'm tolerating it pretty well.  It is not easy or fun, but it is not beating me up too badly either. The nausea has been minimal to non-existent. I haven't lost my hair and probably won't with the chemo drugs I'm taking. My symptoms range from the normal fatigue and low energy to the annoying cold sensitivity in my fingers and in my mouth.  I wear gloves everywhere because my fingers tingle.  Because I can't tolerate cold drinks, I drink room temperature Coca-Cola which is an abomination to this Georgia girl.  

Mentally, I'm feeling pretty optimistic about my treatment and the prognosis.  I am relatively young, and aside from having cancer, I'm in great health. From a faith perspective, I know that God is with me and will stay with me.  I know that he has put people in my life who have and will help and encourage me as I go through this.  I know my needs will be met, and I believe that healing is possible.  My job is to keep moving forward and have faith.

I'm catching up on my chronology of events, processing as I go.  I will be writing more in the coming weeks about how things have unfolded and the details of my illness.  I'll cover the serious to the silly. Being able to laugh at the absurdity of it lifts the weight and has gotten me through some rough times. There are also some serious topics like conversations with Sara and the trials and tribulations of walking a 9-year old through an illness.  By the way, Sara is faring well all things considered.  She's resilient and yet pensive.  She's also 9 years old and pretty into her own stuff too.  Like me, she is surrounded by great people who help and encourage her. 

The most surprising thing to come out of the past two months is the outpouring of love and support from expected and unexpected sources.  I'm surrounded by loving and supportive people from the closest friends to mere acquaintances.  People have been so kind and so generous.  I have to admit that it kind of rocks my inner cynical core a bit, and that isn't a bad thing. Sara and I are both so loved and so blessed. 

Been a long time

I haven't written a post in 3.5 years.  A lot has happened since I started this project as an effort to unclutter my space.  I really uncluttered when I got divorced two years ago.  I wouldn't recommend that as an uncluttering method.  However, it did change my life.  The most recent change and the reason that I am resurrecting the blog is that I've been diagnosed with cancer.  I'm using this blog now to write about that experience.  It's changing my life in so many ways and the changes have just begun. I'm curious to see where this experience takes me so I'm sharing it here.