Radiation #14 of 33, or Cancer Holiday

This week went pretty well overall with the radiation.  One day they said the skin was looking a bit red, then, today, they said that it was looking great.  Either way, Today (Monday), they decided to begin what is called, a “bolus” treatment around the scar of the mastectomy.  If I understand correctly this is a higher dose specifically around the scar.  Not sure why exactly. Maybe because it’s the closest thing to breast tissue that I have left so they treat it extra.  Anyway, they marked the area all up with red marker and six little stickers and proceeded to radiate the thing.  The Radiation Oncologist said that it will make the tissue around the scar very red/irritated, but that is what “we” want.    I found out today, though, that I get Memorial day off of treatment.  I believe that cancer doesn’t work on Holidays, so it’s cool.

One thing that was different about this week was that I actually spoke to one of the other patients.  Or really, she spoke to me, but I did respond.  In all this time, I’ve pretty much kept to myself, because, after the “old lady on her second round of breast cancer incident” (see earlier post Round II, I believe) I’ve had post-traumatic stress about speaking much to other cancer patients who are currently in treatment.  It’s a self-protection method that has worked for me up to this point.  This day, I felt I made several breakthroughs.  The first, as I mentioned, was actually speaking to someone else.  The second, was that having this conversation with her, did give an opportunity to reflect on my treatment and how I was doing.  The woman had approached me and said, “I noticed that you are doing very well, can I ask what kind of cancer you have?”  I told her about the breast cancer Stage III A and my course of treatment which began with Chemo (Adriamycin – Cytoxin 4 rounds) then 10 weeks of Taxol – Herceptin), then Mastectomy, now radiation.  She said she also had breast cancer, that hers was between Stage II and III (which confused me) and her treatment began with Mastectomy, then Chemo, now Radiation.  As she was speaking, she was rubbing her feet and saying how badly her feet hurt and how much difficulty she is still having walking due to foot pain and weakness, and dressing her 3 year old! with her limited fine motor control.  Because we are existing in Groundhog Day, I, of course, had noticed her dragging herself in on her flip flops just before me, every day for the past 13 days.  I had wondered how old she was, and how close she was to her Chemo.  I was thinking she likely was somehow still in Chemo and doing radiation at the same time based on the very little amount of hair she had.  Trying to give her hope, I mentioned that I had only taken 10 weeks of the Taxol and that I was sure I was further out from chemo than she was.  After further discussion, it turned out that I had discontinued the chemo only a few weeks before her.  She had however, completed all 12 rounds of the Taxol.  I mentioned also, that I had exercised pretty much throughout the whole thing. She mentioned that she too had exercised with raking her yard, etc.  I told her that my neuropathy used to be much worse, and that it has continued to improve with time. 
This conversation reminded me how thankful I am that we did discontinue the Taxol after 10 treatments instead of going ahead to complete the (very random in my opinion) usual 12 doses, due to the progression of neuropathy in my hands and legs.  According to the Doctor, I was in Stage II neuropathy, and once you get to stage III, the recovery is more difficult, or less complete.  I am also glad that I did attempt to continue exercising throughout.   While I am considerably weaker than I used to be, compared to my pre-cancer heyday, my current low is likely a bit higher than many.  Maybe, since Memorial Day is a Cancer Holiday, or  “A Wrinkle in Time” if you will.  Maybe I’ll go out and see if I can run a ten miler or something.  :)

Here i am in my homemade radiation skin protection shirt. Haven't made it much past the parking lot yet.  I wonder if the sun will still irritate my skin on Memorial Day.  Surely not.

"Do NOT paint a bicycle" or Elusive A-1

A few weeks ago when I began researching “How to Write a Book”, I found it hilarious that the first thing I found on my Google search was the exact same recommendation that Richie had had found several years ago, when he had researched… “How to Paint a Bicycle”.    The first and foremost instruction was,  1.)  “Do NOT paint a bicycle”.  Then it went on, “But if you must…” followed by a list of other things that must be done with descriptions of how it will all go wrong if you choose to ignore instruction #1.  The information I found in my search was at least as limiting and equally as likely. (You know, things like, it’s a waste of time, you’ll never finish, and it will only cause heartache).  Later that week, I randomly stumbled on something written by Alan Ginsberg titled: “On How to Write”. Each section of discussion included a list of quotes by writers and philosophers.  One of the quotes that struck me the most was by Poet, Ezra Pound…  “Direct Treatment of the ‘Thing’ ”.  It was within the section of discussion called “Plan…or…Method”.  I immediately began thinking how Radiation is the part of this Method (the oncologists treatment plan) that is the direct treatment of the thing/cancer.  (The chemotherapy was “regional” and the surgery was “local” to use some of my oncologist’s favorite terminology.  During the radiation, they shoot very carefully calculated beams, or “tangents”,  of radiation, directly at the tissues that are considered at risk for recurrence. )               I then wondered if Mr. Pound had ever had radiation treatment. 

This week I’ve had another head-on collision with my frienemy  “The Method”. 

The week started off pretty well.  Each day, as I had planned for my personal entertainment, I had taken note of what was different about treatment each day:  One day I got a nice text from a friend, and one day I noticed in the background, the song “if you like Pina Colada’s”, which reminded me of a conversation that Richie and I had recently had on a beautiful day on the beach at the coast.  Another day, I noticed that the photo on the ceiling in one treatment room had a boat in the river and the same photo in the other room had no boat.  Yes, that did creep me out.  And the sounds of banjos did enter the mind.  One day I was 5 minutes late, and then had a 45 minute wait due to the earlier power outage that was due to the huge rainstorm that we finally had.  Each day, I tried for the A-1 locker on which I had set my sights, but the key was always gone.   By the third day, I began to wonder if someone before me had put their sights on the A-1 just as I had, and had decided to take it as their own.  I was then disappointed that I had chosen such an average goal.   By the 5^th day, I just couldn’t let it go and I tried opening the A-1 without the key.  It opened, and there was nothing in it.  Had someone gone so far as to take the key?

Then the collision happened. During discussion with the Radiation Oncologist at my weekly appointment, it became fairly clear, that once again, I will likely not get things my way.  Sometime  after my oncologist had told me that reconstruction would be 6-8 months after the mastectomy and radiation, I met with the Plastic Surgeon for a consult.  I was not happy at all with this 6-8 month suggested waiting period.  We ended up primarily discussing the DIEP reconstruction procedure for reconstruction, because I was SURE that it was what I wanted.  Remember? The Genius idea of moving the fat from the abdomen to create breast mounds? And not interfering with any muscle?  Well, I do still believe it is a genius idea, but now that I’ve had the first mastectomy, I’ve all but ruled it out due to the severity of the surgery. The single mastectomy was much more painful and difficult to recover from than I had expected. I’m not even fully recovered as I speak. So, I’ve decided that I would not like to attempt to have 3 incisions all at once.  When discussing the DIEP procedure, in which the reconstruction is supported using blood supply re-routed from the abdomen (which has not been radiated), the plastic surgeon had mentioned that he could perform that surgery within 6-8 weeks of the radiation.  So, that’s what I’ve been thinking and planning despite what the oncologist had originally stated when considering standard saline implants (6-8 months).  I have really wanted to get on with this treatment and have it all completed so that I could move forward with my life, so my mind attached itself to the 6-8 WEEK scenario. The part that I forgot was that I have pretty much chosen to change reconstruction procedures.  Whatever I will end up having done now, will be using the blood supply from the area of the previously radiated tissues, not fresh re-routed tissues. Therefore, when discussing my post radiation plan, the radiation oncologist mentioned that the plastic surgeon would not touch me earlier than 6 months after radiation.  He also said he’s seen others’ try it sooner and the tissues/reconstructions have failed!

So, Dear Method, you have won again.  I will follow instruction #1, and I will Not Paint THIS Bicycle (right now).  But, after merely one (more) evening of feeling sorry for myself, I’ve chosen to look at what the positive options of waiting for this reconstruction could be.  I’ve decided that I could possibly squeeze in a 50 mile run between recovery from radiation and the future mastectomy and reconstruction.  This surgery might even have to wait for me! 

Photo from David's Confusing Blog. Grand Canyon. Please read David's blog on his completion of the epic R2R2R run!

http://youareconfused.blogspot.com/id's

This will give you an idea of what i'm talking about. :)

P.S. !!! To anyone playing me on Words With Friends!  My apps are down!  both the paid for and the free versions no longer working.  I'm not ignoring you or resigning!  If anyone knows how to fix this, please let me know!!! (i've already tried re-syncing but that's all).

Emily

Groundhog Day

I'm one of the only people I know who didn't like the movie Groundhog Day.  (I didn't like the more recent Source Code either).

Even though my life has become much more scheduled in recent years (after kids) and I've even grown to see the benefits of a routine schedule in many ways, it does still bother me to think about doing, or to actually do the exact same thing every day.  I've struggled with this issue over the past seven years with raising Adaline, with her morning routine being almost exactly the same, almost every day. Between 5:50 or 6:20 she wakes with a cry/squawk. We prepare a bottle with pediasure for her to drink with her phenobarbital. Warm it in the microwave 25-27 seconds depending on the microwave strength measure out the medicine and add it in.  We verbally alert her that we are on our way to get her.  Dependent lift, then carry her to our room.  Feed her the bottle.  Kiss her on the sweet dip in the bridge of her nose while she’s finishing the bottle.  She rolls to the right.   If it’s the weekend, now, she will snuggle for a bit and laugh and play.  If it’s a weekday, then we roll her back to her back to change her diaper against her will.  She begins to cry and kick, because she does not want to wake up, or have her diaper changed. Then it’s time for the pants, which she desires even less. It’s a struggle, and she kicks and balls up, but eventually we get her pants on. Then the second lift, up into her wheelchair. Seatbelt On (double check that it fully clicked, since the fall).  She burps. She cover's her face.  "Where's Adaline?" we play this game several times.  Push chair into the bathroom to brush teeth. There used to be fight with this, but now it is mostly fine due to the discovery of the music toothbrush. (Thanks Aunt Erin!) Finish brushing teeth and then give the toothbrush to Adaline to let her brush.  Try to get brush back… she cries if I take it….Leave it.   Wash face.  Move Adaline in her chair to go out to the TV to watch Mickey Mouse or Handy Manny in order to distract her for the completion of her dressing. As her chair moves, she throws the toothbrush to the ground.  It will be picked up to be washed later.  Turn TV on.  Find Disney channel as quickly as possible before she gets upset. Put Lunchbox in backpack.  Time to change her shirt.  Lift her right arm….she gets mad and clenches up, sometimes tries to bite my hand, but really just a love bite.  Attempt to distract her again, and then change her shirt. Put socks on. Put shoes on.  She kicks shoe off. Put shoe back on.  Jacket on if needed. Chest straps on.  Lotion on face.  Brush hair. She then grunts and reaches for the brush. Give brush to Adaline to brush. She watches a minute of TV. Try to take brush back.  She cries. Leave brush.  Kiss Adaline and tell her how beautiful she is.  Bus! Bus!  Open front door.  Begin to move wheelchair….she throws the brush down to the floor.  Push the chair hard over threshold, and hard enough that her footrests on the chair push open the screen door.  Wheel through the yard. Rotate.  Back onto the bus chair lift. Lock brakes.  Wave goodbye!  She’s very happy as she rides up the chair lift onto the bus. Kicking her legs with joy! 

http://www.youtube.com/watch?v=s7y9RIIFK9o

Some of the order can change slightly, a few of the steps have been added since she began to attend school and ride the bus, and we have had a few vacations (Thanks again, Aunt Erin, and Grammy and Dpo and JEN!) but for the most part this is our morning routine.  It occurred to me recently during a walk jog with my friend Cindy that having this day in - day out routine did bother me when I did not get a break from it now and then.  I had begun to think more about it because I was no longer getting my morning breaks on Tuesday for my morning running group, and the occasional Saturday depending on what time I’d run on Saturday. It was very easy for me to get up at 4:30 or 5:00 a.m. to run and break up my routine.   While the constant repetition does begin to wear on me without a break, I also hate to consider the alternatives.  

With all that said, now, here I am in, another Groundhog Day Type Scenario. It's a bit more like the Source Code somehow though. (Source Code is a Sci Fi Flick where a soldier gets ?teleported ? into another man's body to be allowed to re-live the last 8 minutes of that man's life in order to solve a crime.)  Every weekday at 1:30 I drive over to the radiation center and check in.  I sit in the waiting room for a few minutes and play my words with friends, or write some notes.  They call me back.  As I walk back they say “you can go ahead and change, we’ll be right with you”.  I go into the changing room. I take off my clothes from the waist up as instructed.  I open the B-2 Locker and put my things in.  I take off my necklace, reluctantly, and set it in the locker at the front, so I cannot miss it when I come back.  I put my gown on, open to the back.  I walk out toward the radiation room and a tech says “we’ll be a few more minutes; you can have a seat in there”.  I sit and look at some magazine. They call me back.  There is some discussion about how I’ve been feeling, etc.  I sit down on the plinth, then lie down in my mold with my arms over my head and my face to the left.  They put a bolster under my legs and begin to position me just so.  So that it is exactly the same every time.    They leave the room and then the radiation begins.  It is painless other than the discomfort in my right arm due to the severe muscle tightness.  There is a beeping sound that lasts between 30 and 10 seconds a few different times and the machine moves and radiates from a few different angles.  Someone comes in and places a rubber mat on my chest, then they leave and there are a few more beeps.  Then it’s time to get up.  I must use my other arm to lift my right arm, after it’s been stretching that way.  I get up and reverse the whole dressing bit.

One day a week, on Mondays, I get to see the radiation oncologist, for a visit. Although I have seen him each day so far due to a question we had about radiating the existing lymph nodes.  At one of my visits with the surgeon, he told me to not let them radiate the “left over” lymph nodes in my axilla (the ones he did not remove during surgery).  I had asked him to please call the radiation guy himself, but I did tell them he said that.  Due to my making that statement, they held off on the lymph node radiation until today.  Apparently, there are different amounts of radiating of the nodes that can be done.  We are now doing mine, but to the lesser degree.

I am stretching my arm, but it is still very tight. I’m attending my daily radiation treatments, and I’m applying my lotions 2 times per day, and 2-3 times per week as instructed.  I am a drone. However, again, I dislike considering what could happen if I did not continue the course.

Since I’ve been thinking about this “Groundhog Day” phenomena, I’ve been trying to mix it up a bit to see what would happen.  I’ve started playing music for Adaline while changing her diaper….she doesn’t cry or fight.   This morning she even started dancing.  So, I think for fun, I think I will try to take special note of what IS DIFFERENT every day at the radiation visits. I think I’ll go for the A-1 locker tomorrow!

Here is something else that is Different!

That's my new hair!  Wow.  I had no idea my neck was that long.

What's bizarre about this photo is that when i first saw it, i thought it looked exactly like my Dad from behind when he was younger. But with an earring.

This Kid is Just Different

Damn it! Radiation makes me hungry.

Tit for Tatt

 It’s been a strange, challenging, yet surprisingly decent 2 weeks.

The week before Easter, my boss called me to let me know that the therapy clinic I work(ed) in is being closed and that there may be another position in the same company available when I return.  Anyway, because I had agreed to the practice of a “mope-free” weekend, I tried very hard not think about it much. I was mostly successful. It only woke me up a couple times at night.  Luckily, my health insurance is through Richie’s job, so at least I did not have that to worry about.  Despite this, I managed to have a very relaxing weekend and a nice Easter with the family/kids.  The swelling in the mastectomy site was also appearing to slow a bit after the last aspiration on Wednesday, which also kept my spirits up.

On Tuesday, in the morning, I went to my every three week oncologist visit where my Doctor proceeded to mis-dictate my history AGAIN, and then had the triple dose Herceptin chemotherapy.  I got a very nice nurse this time, who, when I mentioned how lethargic and stiff I’d been, actually recommended exercise! And then she asked me if I had any kind of exercise that I liked to do J.  Of course I got a huge kick out of this and took it as an invitation to tell her all about myself and my activities prior to cancer, and my goals to return to some form of runner/exercise addict again. 

In the afternoon, I went to see the Radiation Oncologist for the pre-radiation visit and simulation.  After listening to my troubles with the drainage, hearing about my general lethargy, seeing the extreme tightness and weakness in my arm and shoulder, (particularly the pecs, lats, serratus anterior, and triceps) hearing about my inability to yet use that arm to lift my own immobile daughter, and considering my potential to develop lymphedema, and the fact that I’m going to start daily radiation next week, the radiation oncologist decided that I should not return to work until sometime after radiation, in order to allow time to heal my arm, not risk further physical breakdown during radiation, and allow further physical recovery.  I agreed with his recommendation.  I feel very relieved and thankful that I will have this time to focus on radiation and further recovery for my arm and for my blood counts. 

The Tatt is the greyish one second from the top.

After the visit with the Radiation Oncologist I proceeded to the radiation simulation room.  It was fairly interesting.  Basically I had to lie down in a CT scan machine, on a bag looking pillow that puffed up and got hard, making a mold of my body, in the planned radiation position: Arms above head (best I could…this was pretty painful due to the severely tight shoulder) and facing away from the radiated breast.  Then I had to just lie still in the mold as i went in and out of the CT scan machine several times. Once that was over, the nurse gave me three single point tattoos on my abdomen: One in the center between the ribs, and one on each side over the ribs. These marks are used to line me up exactly the same way for each radiation treatment.  The one in the middle really hurt. The ones on the side were not fun, but not as bad.  It did make me realize, once again, that I’m glad I never went through with that plan I had my freshman year in college.  I’d likely be sitting here now with half an Aztec arm band!    

On Wednesday, I began the stretching of the arm/shoulder. The serratus is very weak and the whole chest, back and shoulder girdle are very weak and tight! Especially the Pecs! The fascia in the whole area is also very adhered and painful. The stretching is quite painful, but also feels sort of good in a way.

On Friday, I had the opportunity to cheer up a random stranger in a coffee shop. We got to talking because we had both been to see the Kindergarten choir show the day before.  I mentioned that my daughter was the one on the front left that the teacher was holding, and helping move her arms. 

Then, after talking with me for about 20 minutes, hearing about Adaline’s disability, my cancer/treatment/surgery, and my recent job situation, I think that he felt more confident, that with his health and his otherwise fortunate life, he could get through his current divorce.   It was kinda funny for me though, because, before he had heard my story, I heard him saying that he had been wondering “why me”?  I almost chuckled when I heard him say it, but didn’t out of respect.  Later in the conversation I told him that I almost chuckled when he said it, even though i do not think that losing a spouse or home to divorce is funny.  On the contrary, i feel very fortunate to have my family and my home.  He told me that after I told my story, he had thought to himself “what had this girl done in her last life to deserve all this?” By the end of the conversation, I was pointing out that you just can’t always assume that someone or something made this happen to you for a reason. I do believe that good things can come out of bad situations, but I just cannot believe that someone is trying to teach me a lesson.  If so, then I am either a total idiot, or one of the most educated persons I know. 

Sunday was my 41^st Birthday.  The first thing I said to Richie in the morning was…"Yes, I do feel older today, if you were wondering".  Since the chemotherapy, and even more so since the surgery and the immobility that followed, I’ve begun to feel much older than I used to.  It is difficult for me get going after I sit for any length of time.  My hips are very stiff, and of course I have limited use of my arm.  Also, since the taxol, I still have impaired fine motor skills and I’m constantly dropping my utensils, and have difficulty untieing my shoes. Oh yeah, and i'm sure that my body fat % has skyrocketed.  If i was allowed to swim, i'd likely not even need to hold my breath to float.   Like this guy.

Photo from Dolphin Talk newspaper.

I think that prior to cancer I was a 40 year old living in a “thirty-something” (early thirties :) body due to my fitness.  Now, it’s like, due to all of this treatment and time off from exercise there has been a time warp and I’ve landed somewhere in my mid-forties. BAM!  Like that.  I didn’t ease into it like most others so I think it hurts that much worse!  With that said, this is my warning to those of you who do exercise.  DO NOT STOP. J Oh yea, and try not to get Cancer.

Radiation, 5 days a week for 6.5 weeks begins tomorrow.