Sunshine in April

         I can!  I can!  I can finish this!

Monday.  March 12.  Starting the week after Harmony Hill, I was extremely tired and drained.  It was such a great weekend, but I simply don’t have any reserves.  I continue to try finding the balance between activity that leaves me drained and activity that gives me energy.  I don’t like to overgeneralize, but in reality, pretty much everything is draining at this point in treatment, even the good stuff.

Tonight was parent night at River Ridge High School, so we went to learn about high school requirements and a bit of what to expect for the next phase of Mikala’s schooling.  She is terrified about high school and going to school with ‘big kids’ – aka seniors and juniors.  It will be hard for going from a 300 kid school to a school with about 1400 students.  That is a huge change.

Tuesday.  March 13. Chemo Day.  Round 10 of 12 for Taxol.  Round 14 overall.  After this infusion, I only have two more to go, which is great because this shit is getting old.  I am counting down and ready to be done.  My nurse Susan was awesome, but everything went slowly (getting blood work back; getting the meds started) and I am there for over three hours.  On the positive side, I was pretty chatty – maybe I do have some leftover energy from Harmony Hill.  I told her about my plans for an after chemo adventure, which may be a week of camping or a hotel.  I don’t like the idea of a hotel because I won’t be able to swim in the pool as I am having my squamous cell carcinoma (skin cancer) removed just before we leave.  On the flip side, camping is a lot of work to prepare for.  Hmmm.

After chemo, I finally met with Peg for the first time.  She is the on-site therapist, and cancer patients have three free visits with her.  If she thinks you can benefit from more, then she will refer you out to another therapist in the area.  It was a great session with her and she gave me a huge reminder:  Put my oxygen mask on first!  I am such a care taker of ‘my people’ that I often forget to check in with my own needs.  I needed that reminder and permission for my own self-care.  It is time to make myself a priority.  I just have to relearn how to do that.

All day, my legs felt like lead weights and didn’t want to work.  Again, my overgeneralization, but EVERY part of my body is wasted from this process.  In spite of this, I went to the PTO meeting.  I mean I am president and have not been there since November…. AND, the spring musical, one of our busiest times for helping Aspire, is coming up mid-April.  I pull it together and function through the short meeting, even pulling out some memories of what we need.  Thankfully, I did go through old notes and jot down things so I wasn’t completely relying on my crappy memory.  It was nice to see everyone as I like this group of ladies – they get things done.

Image:  My peach fuzz!  (We are remodeling our bathroom).

Pathologist.  One day this week I met with a pathologist as we were encouraged to do during the Cancer101 workshop.  He talked really fast so it took a lot of energy trying to keep up with what he was saying.  I learned a lot, maybe even some of which I will remember…  The bottom line I took away was that he does not trust scans as they only give a generalization regarding the size of tumors.  The tumor can be bigger or smaller, and he only trusts the info straight from the tumor, meaning the tumor has been cut out and sent in for analysis.  The scans (MRI with contrast is what I had done) are a guide to where exactly the tumor is located, a general idea of the size and other structures involved (bone, tissue…), and are a way for surgeons to know if and where their skills can be used to treat a cancer.  Also, according to him, the aggressiveness of  a tumor is only a mild indication of potential metastasis, or spreading.  For example, a smaller less aggressive tumor can already have cells that have migrated through the lymph system to other areas in the body.  Or, a larger and more aggressive tumor like mine could still be contained within the general area and not have spread.  He explained more about cancer grading on the TNM scale.  T stands for the tumor including the size.  The size of my tumor is not good.  N refers to the number of lymph nodes involved.  Right now the scans indicate no lymph node involvement, which is good.  And M refers to whether the cancer has spread past the lymph nodes, or metastasized.  If no lymph nodes are involved, the cancer has likely not spread.  I use likely because providers have ideas of how cancer generally evolves, but cancer doesn’t play by any rule books.

For breast cancer patients, metastasis generally occurs in the liver, brain, lungs, or bones.  I can breathe just fine, so I am sure my lungs are doing well.  But, of course, every bone ache makes me think it is in my bones.  Every time I experience chemo brain, I worry that it is in my brain.  My poor liver is having a time trying to filter out the poison coursing through my body, so I am positive I either have liver cancer or cirrhosis already! 

Back to my current reality, the pathologist offered to order the slides to come down from Seattle so he could show me what the cancer looks like.  At the same time, he could get the slides from my breast reduction surgery that was done in ’08 for comparison.  They keep tissue samples for twenty years.  WOW!

Wednesday.  March 14. Nurse Navigator at Seattle Cancer Care Alliance (SCCA).  I have been in contact with SCCCA since the beginning of this process, which is a world class facility that is just an hour away (when the traffic isn’t too bad, which is almost never).  Now that I am almost done with chemo, we make an appointment for the last Friday of the month to go over my treatment, scans, and what they think the next steps should be.  She takes me through the process of what will happen during my appointment and it sounds quite daunting.  The great news is that the sessions will be audio recorded so I can go back and listen to the tapes without needing to take notes at a stressful time and during an overwhelming process.   Since my nurse navigator was a chemo nurse, I asked her about the ACT (Adriamycin, Cytoxan & Taxol) chemo.  She said that is probably what SCCA would have suggested as well as it is the most common course of treatment for aggressive breast cancer.  I asked about the potential of breast reconstruction at the same time of surgery if I have a mastectomy.  She said they do have that capability, but don’t like doing that because they’d rather have all of the tissue analyzed to make sure they have clear borders all around and because of the potential need for radiation before reconstruction begins.  Even with a mastectomy, the person has some breast tissue left over.  It is a possibility, so something to definitely discuss with the surgeon.  According to all of the data, a mastectomy in lieu of a lumpectomy (if patient is viable candidate) is only miniscule in risk of recurrence.   That is what I keep hearing and reading about.

Navigation Nurse Megan took me through the whole process of what the day will be like and it is quite involved, starting at 11:30 for check in, then being done around 5, with a lunch break in between.  After checking in and dressing down for the exam, a resident (Cancer Care Alliance is closely connected with the University of Washington Medical Center, Fred Hutch Cancer Research Center, and Seattle’s Children Hospital) will go through a thorough medical history with you then do a breast exam.  Afterwards, you are welcome to hang out in your room or go out and have a bite to eat or just walk around.  While you are away, the resident presents your case to an oncologist, surgeon and pathologist.  Once you return at 2, the three doctors will come in and talk to you and do an exam.  They leave and you get dressed, then each will come in and discuss your case and care from each of their points of treatment.  In addition, some-time after you return a physical therapist will come in for a base measurement of arm circumference because lymph node removal puts you at higher risk of having problems with lymphatic draining.

Holy cow that seems overwhelming!

She said most patients are wiped out after all of this, so you are encouraged to bring support people.

Thursday. March 15.  I take Bear for a short walk and meet Amy for lunch at Traditions Café.  I learn a lot from her about next steps (surgery and radiation) in the process as it is all too fresh in her own memory.  She is about five months ahead of me in the process, and I so appreciate the company, laughter, and sometimes quite morbid humor!  Yes, we poke fun at cancer and the ridiculousness of what we are going through.

As we were wrapping up, she asked me if I was tired.

Do I look tired?

Yes!

Damn.

Sometime in mid-March, Grey had a great analogy that sums up where I am.  He says that I think my gas tank is full when I’m feeling well, but what I forget is that I only get one mile to the gallon, so after two miles, I’m already on E.  I have a really small gas tank and crappy gas mileage.

I wanted to do some errands and in complete denial about my gas tank being on E again.  That outside check was just what I needed as I may have tried to do the errands and had a complete breakdown during the process.  So instead, I go home fucking exhausted and just start crying because I am so tired.  Geez, I suck at reading my own emotions in the moment – I have some sort of delayed reaction like I am not able to process until after a situation is over.  I am slowly accepting the fact that my post chemo celebration should not include camping as that would be too much work.  Again, these expectations and reality are in conflict.  I am still practicing being in the moment.

Images:  Zuko, my little fat cat, offering up some company and entertainment.  *We have to watch his intake so skinny cat (aka Neville) can eat!

Friday. March 16.  In spite of being tired, I still have some errands to run since I did not get to them yesterday.  After I drop Mikala off, I head to Target.  Before I get there, a guy – NOT paying attention – crashed into me at the stoplight.  He did not (or pretended not to) even know he bumped me until I got out of my car.  He was a bit startled at the cancer patient looking at him expectantly, like, wtf?!  A quick check and everything looked okay, so off I drove.  Then a lady almost ran into me in front of Target.  Hey, lady, pay attention!  Good grief!  Just trying to get some stuff done without adding extra stress.

Saturday.  March 17.  Art day with Jane.  Before Mikala was born, I used to hike almost every Tuesday in the summer with an amazing group of ladies, most of whom I don’t see very often now.  Today was a fun day to catch up with a few of them and spend some fun time together creating artwork.  We ate wonderful fresh lunch on beautiful handmade pottery dishes (perks of being an artist and knowing other artists).  After lunch, we headed down to the art studio downstairs to paint tiles with Jane guiding us like the great teacher she is.  Mary and Erica’s work were both quite impressive, and even though I am actually decent at painting, my sailboat looked like it was from a little fourth grader.  It was so funny to me.  I am totally blaming the mild neuropathy I’ve been experiencing…

Image:  My 4th grade sailboat.

I was so tired before going to see these ladies, but I refused to give in because I knew their energy would be contagious and lift me up.  Yes it did!

Sunday. March 18.  Tweaker day!  I’m like a meth addict without a fix!  My whole body is in chaos mode and my mind goes to bad places with overwhelming insecurities.  Still the massive bouts of anxiety on the weekends before chemo takes over my whole being.  I hate to keep harping on just how little energy I have or how leaden my legs are, but that is my daily reality.  Even basic functioning is challenging, and the weekend before chemo adds a level of anxiety that is out of control.  Just more of the same.  More of the same anxiety, draining of energy, lead legs and lack of ability to taste foods, so I don’t know why I bother….

Yes, I do know.  I bother so I can keep up what little bit of energy I can muster.  I bother because I can pretend to taste food, and I really do enjoy the process of eating different textured foods.  I bother because it matters to my loved ones that I keep going and facing this beast.  I bother because I have plenty of life left in me.  I bother because it matters to me.

Two more infusions.  Two more infusions.   Just two more and I am done with chemo!

 

Current status:  I am a few months past treatment now and getting energy back.  I can do things without being exhausted, though I still get tired quicker than I’d like.  I subscribed to a couple of free cancer magazines (Cure, Conquer) and read about the Ulman Cancer Fund For Young Adults.  They offer a 12 week training program for cancer survivors with the goal of completing a 5K run.  I got  my paperwork signed by my doc to send back in and hopefully will start this program soon.