3....Done....Hat Trick

Today was another day of mental challenge, initially.  Again, full time childcare, and then break for radiation.  Again the double wait scenario.  Wait for radiation, and then wait for the doctor.  I was having real trouble being patient and may have said something out loud to the nurse about being frustrated with having to wait so much lately and needing to go to take care of my children.  The other nurse came in and decided to bump me forward and see me in the dressing room.  She looked at how my skin was breaking down and she offered me a day off, to be made up next Tuesday.  I declined.  I could not fathom dragging this out even another day. 

Then the day turned.  No, not yet, actually.  Once the sitter came, I then waited one more hour in traffic on my way up north to one of my favorite trails to meet my trail group, Tejas Trails.  I had run into the coach, Joe, on Sunday, and he had mentioned that he still had my hat, and that he and the group would be out at one of my favorite trails on Thursday.  He had been holding it (my favorite light blue Port O’Conner visor) for me in his car since my last trail race:  The Pedernales Kapt’n Carls 30K in August 2010 (10 months ago), 2 weeks before “You have Cancer”.

I wanted to go out there to see the trail again, to see the group again, to get my favorite hat, and to talk with Joe a bit more.  All accomplished and i had a great time.  Unfortunately, I believe it was the hottest day yet.  I checked the current temp just before I got out of the car, and it was 101. 

Anyway, today I received this photo of the evening from my friend (thanks Chuck!) that had been posted on FB by Joe himself.  

Tejas Trails Group
Many of these people have run one or more 50 milers, and a few have run 100 milers! Very impressive bunch!

 I’m shown near the center, holding my hat.  But, that is NOT the first thing I noticed.  I noticed what was missing, since the last time i wore this hat, and what you all will likely notice.   I also have, somewhere, (Lisa or David do you have it?) a very similar photo taken in the same spot in Nov/December 2009 when I had 2 breasts and hair, and I was in dam good shape, I might add.  Anyway, it got me thinking how this past 10 months has been kind of like a crazy hat trick.   Things there one minute, gone the next.  Fortunately, most of the time, the stuff under the hat isn’t that important, anyway.  And, if the trick goes right, the items simply re-appear.  Like Magic.

2 left 

Radiation #20 out of 33: Segway

Me in the waiting room at Radiation

I need to correct something I said on my last post about the “Bolus” treatment.  It’s still a bit unclear, and I should probably be more diligent about clarification, but part of me likes my recent method of ignoring this portion of the treatment.  Anyway, apparently, what I was doing before this current phase of the radiation WAS the bolus.  They were putting a ¾ inch rubber pad on my chest over the radiated area for about ½ of the zaps.  I believe it was that rubber that made me feel the weird menthol cigarette feeling in my lungs and throat because I’m not feeling it now. The Radiation oncologist mentioned that the rubber pad brought the treatment closer to the skin because it added thickness.  So, now, they’ve removed the pad and they are doing a very similar treatment without the pad.  (You know, I lay down on the bench in my mold, they line me up with the tatts then the giant “C” arm moves around and zaps me from different angles.  First zap 17 seconds, etc. ) Apparently without the safety of the rubber pad, it is a bit MORE intense. So, what they were doing the day of my last post was setting me up for the narrowed treatment around the scar which will begin basically once the skin everywhere else can no longer handle the radiation, and it needs a break.  So, they’ve calculated the tangents and set up a different machine to complete this narrowed treatment, but it will happen only when, or if, the rest of the skin can no longer handle this intense treatment.  The radiation tech said that the best case scenario is that they can complete this intense treatment throughout the remainder of the treatments and not have to do the narrowed treatment/not have to give the rest of the skin a break.  It often gets very confusing for me because they will say the skin looks very “good”.  Sometimes they mean it is nice and red/burnt like they like it, and sometimes they mean that it looks good/it looks healthy…it can handle more.  Maybe tomorrow I will ask what will happen at the end if the skin never gets as red as they want.  I remember reading my online friend Heather’s blog that said they made her do extra treatments at the end.  I hope this is not the plan for me.  If so, maybe I need to be less diligent about my skin care.

Overall I’m still having some good days and then some days of severe fatigue. My blood counts have gone down since the last 3 week Herceptin chemo due to the radiation.   I’m stretching my arm diligently, and I’m seeing some improvement, however it is still very tight. Now there is some pain in the area of the radiation deep and superficially.  I did enjoy my short Cancer Holiday. It gave me a small window into the not so distant future of what it might be like to have a life without cancer or cancer treatment.  

Here I am in the shade laying out by our pool.

Here i am sporting my radiation tan, and...can you tell which one is real? Guys can't.

I tagged along with Richie to the Mall one day, and, as I was making fun of the Mall Cop on her Segway, (picturing myself taking a random item off of a shelf right in front of her, and walking very slowly away as the cop was chasing me…. me encouraging her to “maybe lean into it a bit”, etc….) it got me thinking about Segues in general, and how Segue between events seems to be quite important to me.  *YOU KNOW I WISH I HAD a PHOTO of ME on a SEGWAY!!!   I thought my “Words With Friends” rally was a genius segue between Chemo and Surgery. (Still playing, by the way. Powerhowell) Now, I’m thinking, a 50 mile trail run between radiation and the next surgery/reconstruction.   

But, what about a segue between writing a blog about cancer into writing about something else? Will I continue to blog or write?  About what?   Trail running?  Maybe.  Hmm….. “Homely” (“Trail Runner”) cancer survivor jogs really slowly for a really long time, over dirt and rocks.  Enjoys every step.   I kinda like it.

Oh yea, Ellen has not contacted me yet.  I thougt it was very cool , however, that in a recent email from my cousin (who just graduated from Medical School-Congratulations again Brayden!) he asked me if i knew about when I would hear back from Ellen.  I'm thinking maybe by the end of next week. :).   It probably wouldn't hurt though, if a few more of  you reminded her by posting a link to this blog on her The Ellen Degeneres SHOW facebook PAGE.  It's the one with over 5 million "likes".   I'll let you know if i hear anything!

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.

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

Phase II: Round 11 "I'll take the Zero, Miss"

Phase II: Round 11  (Taxol Done-Herceptin only)  “I’ll take the Zero, Miss”

Tuesday 3/1/11. 

Today was indeed a test.   In school, I used to like tests…I was pretty good at them and it was often like a game for me.   97 average in high school, Magna Cum Something, in PT school.   Most who know me also know that I DO enjoy a challenge and often set myself up that way.   Today, however, I think maybe it’s enough that I made it to class, and stayed to listen to what had to be said.  

Monday afternoon I found out over the phone that my last Taxol treatment was likely done last week. Number 10 of the original 12 planned.  The doctor decided to discontinue based on the neurotoxicity that I was experiencing.  Stopping made me happy and scared.  I was determined to make the point that it was their decision.  I don’t want my own blood on my hands.  

I was instructed to schedule an MRI as soon as able, and then go ahead and come in to my Tuesday doctor’s appointment to hear the plan for further treatment. This plan was to be based on meetings between the Oncologist, the Radiation oncologist, the Breast Cancer Specialist, and the General surgeon.  (They left my buddy plastic surgeon, who is, I believe, on “my side”, out of the loop, which I thought was rude.)

I scheduled the MRI for Wednesday morning at 6:30 a.m. and I showed up on Tuesday as instructed (after my glorious weekly 6 mile Tuesday group run and breakfast.)

Cindy S. and Chuck....who are WAY faster than me,but still run with me :).   AND the ones who got me into YOGA.

The nurse who accesses the port came in, stabbed me as usual, took my blood, and taped on the syringe where the chemo goes.  The Nurse Practioner Sara, who I like, came in to prep me with the bad news.  They had decided that I would definitely have Radiation Treatment due to the original size of the tumor (which was between 5-7 cm) and the aggressive nature of the type of cancer.  I would have bilateral mastectomy within the next 3 weeks, then radiation daily (5 days a week) for 4-6 weeks. I would then wait 6-9 months for the surgery to heel and to see if the cancer seems gone, and THEN plan the re-construction. This all would basically mean extending the course of treatment/surgical plan by about 9 months to a year.  I was very disappointed, because I had had in my mind that we would be able to do most of the reconstruction at the time of the surgery, thereby saving myself a surgery, minimizing a delay in return to life as I’d prefer it, and protecting my vanity.

After this punch in the stomach, as I was sitting in the infusion room for over an hour, crying non-stop, waiting for my 30 minute dose of Herceptin, I began thinking horrible thoughts.  What crazy thing should I do to cause harm to myself, sabatoge my existence, and make myself hurt with physical pain.  I felt I could handle that.  This pain was not physical and it was too difficult to bear.  Everything I thought of though, would only hurt someone else.   Then, I thought of how much this has already hurt my poor husband, who is the last person that I want to hurt ANY MORE.  While I’m sitting there crying and devising schemes for increased personal physical suffering, I also begin thinking……this is a critical moment.  These are the moments that make us what we are.  O.K.  I am pathetic….  I’m sitting here crying while this cute little bald girl is across from me smiling, hooked up to that godawful shit and having a normal conversation with a nurse.  Am I?  I can decide now.  This IS the only thing that I do have control over today.  How I decide to deal with this information.   So, I decided to just let this one go.

“l’ll take the Zero, Miss”.  I’ve always had fond memories of that statement that I heard more than a few times in French class in high school. I never did take the zero in that class, but always got a kick out of it when other people did.  There’s just something so liberating about that.  I’ll take the Zero.. I choose to take the zero, and I’ll be OK.  I could yell out any number and you’d write it down….but, I’ll take the zero. I'll let it go.

Thursday 3/3/11

So now, after the MRI, another appointment/consult with the Radiation Oncologist, a phone conversation with MY PLASTICS guy J,  and days of waffling back and forth, the plan sticks.  The Bilateral Mastectomy is scheduled for Monday March 21^st at 2:00 with no immediate reconstruction.  3-4 weeks of recovery, then 6.5 weeks of 5 days a week radiation.  Then, a 2-6 month “cooling off” period, per the plastic surgeon….i’ll just go ahead and call him Ned... and then the DIEP reconstruction.

One Point for “the Method”.  Zero to the home team “Control Issues.”

Did I say Liberating?