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.

I am not tough. I am all fluff.

Early on in my diagnosis of Breast Cancer, someone said to me…”Do you know why this happened to you?”....I’m thinking.... “No…It’s Bullshit, isn’t it…”, but no, that was not what they were getting at...It was…”It’s because you are tough and you can handle this.” 

It is true that I was awarded the first place women’s finisher plaque for the “Toughest Race In Texas”  a severely hilly 20 mile trail race, and, that I did believe that this was the confirmation that I needed to prove that I was indeed tough.  In some ways I believed it proof also that my husband and my old friend John Stark were wrong. (They have both mentioned at one time or another that I am not that tough).   I used to think that John wrote the BDS song “Yer All Fluff” partly with me in mind, and even if he didn’t, I thought about that when I heard it.

Now, I began to believe that if what this person was saying is true, I needed to make sure that I was no longer tough.  I, for once, needed to allow John and Richie to be right, and at the same time find a way to have things that require “toughness” stop happening to me.   

I initially made a joke of it, and figured I’d just proclaim myself as no longer tough, and begin doing everything the opposite of how I normally do things, like for example, I’d start watching more football and go to church.  Those were the main things that I could think of, that I was obviously doing wrong.  I just couldn’t initially accept running less, or drinking more, as things that would help this situation.  However, in retrospect, now that I am running less, and doing chemo, which is kinda like drinking more ‘cause it is killing my kidneys and liver like alcohol would, I do believe it may be helping. I did also watch a lot more football and started going to YOGA, best I could do under the circumstances.

While yesterday was difficult for me, it has become for me, the proof that i needed to declare that I am officially no longer tough.

This is really not entertaining.  Please do not get your hopes up, or prepare yourself to be jealous of my Wednesday.  On the surface, possibly not even that significant.  Just a day.

The day started out very nicely:  Double shot iced latte’, 2%, paper cup, more ice, less milk, from my favorite Irie Bean coffee bar, followed by taco breakfast with my boy at “our place” Casita Taco.

Then the toughness challenge begins:

9:30 a.m. 1st appointment: Oncologist.

Weight.. Up one pound.  Student nurse + real nurse =  Blood pressure 2x.  Doctor dictates that I'm in stage 2 neurotoxicity which is causing the neuropathies: Numbness and incoordination in my hands and arms, as well as severely painful toes and toenails.  We may discontinue the Taxol next week if necessary to avoid permanent damage.

We will soon have MRI of breast.  If MRI shows cancer still present and active, we will definitely do 4-6 weeks of radiation, likely prior to Surgery.  If MRI looks good, then I’ll have a 4 week break then surgery with reconstruction.  If during surgery, active disease is found, then I will have radiation after. 

10:45 a.m. 2nd Appointment:  Visit with OBGYN at Menopause Clinic. 

2nd weight taken:  up 3 more pounds!!!  What!! No.  Shoes need to come off .  Third blood pressure taken.  Full disrobe.  Speculum - need I say more?  Definitely in Menopause.  No one knows if that will reverse.  The atrophic vaginitis can be improved with small dose estrogen cream.  The vaginal wall can be stretched with olive oil and a candle???  Wow.

Not so pleasant blood draw through arm, to test to see if my thyroid is being affected.  Hmm, with that rapid weight gain from this morning…I almost hope so.

1:45 P.M. 3rd appointment:  CT scan

Scan of abdomen for pre-op (breast reconstruction) identification of abdominal artery location in preparation for the downtube upshift. 

2nd full disrobe.  “Oh, no one told you this required an IV.?”  No, actually, they hadn't.

Tears start.  “Yer All Fluff” begins playing in my head.

IV placed.  Me in CT tube...  “Oh, when did you have Chemo last?” Yesterday. “We’ll we just need to ask the doctor…. due to our policy... No iodine injection until after 48- 72 hours from last chemo”.   More tears…”Are you O.K.”  Head nod, yes, eyes closed. (Richie would be upset if I don’t at least attempt to respond to this woman).  Just lie still and wait in tube.  More… Yer All Fluff.  “The Doctor said your kidney function is good and we can go ahead if you want.  What do you want to do?”  More tears.  Unable to make sound medical decision. “Go ahead, I guess”.

Iodine injected... “It will feel like a hot flash”... Well, at least I know what they are saying... Actually, much hotter than a hot flash, but, over fairly quickly..  IV out... Several more tears throughout the dressing and back to the car.

I am not tough.  I am all fluff  J

Click link below.  Judgemental Radio.

http://www.youtube.com/watch?v=Vxg5nA3KTBc&feature=youtube_gdata_player

Afer only a mere 7 days of perseverating on attempts to get this video to play UPRIGHT!! I've done it!!

 Music Courtesy of John Stark and Blue Diamond Shine.

Phase II: Round 5 and 6 - Call for Uplifting Information

Phase II: round 6

 This week I'm on a quest for uplifting news. 

O.K..... Breathe.....1/2 way, Phase II (Taxol - Herceptin)

I wish were truly a "the glass is half full" person.  I am trying. 

Today is actually the 7th round so now just over ½ way. 5 more.

There has been a break in my updates because after the 5th round I was feeling pretty down and pretty tired of feeling sick and tired.  I started writing something that went like this ...

I don't know if it’s finally the crappy economy spearing its ugly sperm-like head into our nice little Austin "bubble" or what, but it just seems like not-so-good things are happening, to many people that I know....and of course, me.

Just in the past 4 months, I've witnessed 8 people who I've worked closely with, get laid off.  We've had 2 deaths in our "knit family" and 2 child illnesses requiring several days off from school and work.....

I then realized that this started to sound a bit negative like the Phase I round 3 which i had to send in 2 parts (part one was going downhill and then part 2 was the more uplifting part) which made my sweet friend and co-worker Linda almost cry... Somehow (my fault) she only got the first part.  So anyway, I began to re-think, and tried to figure what I could do outside of crying and bringing other people down to help time pass and keep me going. So, I ended up writing somewhat of a sports thank you article/idea about how supportive my running groups have been, created myself a blog page online (partly) (ballotablerecords.blogspot.com) and I reserved myself a plot in cyberspace called BallotableRecords.com. Neither of which have any information on them yet. A Couple photos.  So, maybe soon I’ll be able to blog instead of email. . I’m working on getting this idea/article in the local Fit magazine, but if that doesn’t work, or even if it does, I will eventually post that somewhere in cyberspace.    I'm working on teaching myself how to design a webpage for my new lot, but that could take a while.  Hey, my grandparents, used to do crossword puzzles for hours, simply "to keep their minds sharp" and,I think to help time pass.  I am absolutely useless at those, so maybe this will help me.  I also got to go out to see Richie’s band play twice, which was great and got to go out to a nice dinner with Richie. 

I was able to ride my bike for 2 hrs and 15 minutes on Saturday and felt pretty good, although I was pretty worn out on Sunday.   I haven’t missed a Tuesday morning run and that is one of my goals.     My kids are great. VERY cute and loveable. My boy tells me he loves me, and at times, he even “likes my face”.

On the cancer end of things, it seems that the tumor continues to shrink.  I’m having some trouble with random side effects from the chemo including stomach problems, tingling in toes, literal “curling” of my nails, the sensation of my toenails wanting to fall off and strange little sores in the creases in my ears.   Again, most of these things I’ve experienced before in some part of my life or another, except the curling of the fingernails. But that’s not too bad, just ugly.  The mouth pain comes and goes. Oh yea, and I’m scheduled this week to go to a Menopause clinic to deal with the symptoms of THAT (caused by the chemo).   That should be fun.  I’ll be glad to forward any of that information to those of you over 50! 

I’ve begun my search for plastic surgeons and have started mentally preparing for the inevitable.  I’m almost looking forward to it in several ways.  At that point, I will be much closer to the light, or better put, the “flying colors” that I’m pacing myself toward.  And, I will not have to work for a while which will be good. 

Even though I didn’t ever finish the Call for Uplifting Information email, please feel free to respond to this email with something good that you have seen or experienced recently.  I would like that.

Emily Howell

2/1/11

Phase II (T-H) Round 2 Giddy?

> Phase II: Round 2
>
> Done.
>
> Easy.  Even Great.
>
> Best week I’ve had in 3 months.  Christmas was good, but this week even better, due to the loss of the bone pain! Yeah!  Some mouth pain, but doable.
>
> As i mentioned in the last quick email, my blood counts were great.  Kinda funny though, because, when i was at the appointment, when the nurse was about to stick the needle into my port to check the levels, i freaked for just a moment (which i do every time they are about to stick that thing) and said, "if the blood levels are too low, then we'll have stuck this thing for nothing, right?"   The nurse replied, "yes", and "we can go thru the arm (which is usually not very painful) in case".  She also mentioned.. on the side,,,that every time we access the port it is a risk for infection...great.  So we went thru the arm for the first blood draw.  Most of the other lab people there are pretty good at that.  This girl was pretty good at something else, i'm sure.  Anyway, i was so excited about the huge rise in the blood counts, and a few other things, that i didn't even notice the bruise until yesterday.   The eventual stick into the port was not too bad, and despite the unexpected 1 hour wait to start the chemo, everything went pretty smoothly.  It was nice having Lisa there for entertainment and emotional support, for sure.  They gave me only 1/2 the amout of benadryl this time, so i was still a semi? functional human.  Able to walk myself to the bathroom, etc.
>
> One of the "other" things included the fact that i felt so good even on the day of the chemo, after 2 naps, that i was able to go out that evening from 6:30 to 8:30 to see Richie's new band Downtube Shifter play their first official gig!  It was awesome. 

The place was packed with people i haven't seen in ages, some i hadn't seen since The Knievels days, and also with people that the other bands had brought. The band rocked, and it was quite exciting and emotional for me to see Richie back at what he does best.  Even in the face of all this crap.  I often liken Richie to Gristle.  So tough, yet nutritious, and even enjoyable to the experienced.  Joints...they're what hold things together... like "The Glue" as he is known in some circles.   Richie is the person you want along when times get tough, I tell you.   The excitement of seeing John and Richie harmonizing again with the excellent additions of our old Rockin' drummer friend Hugh, and new friend Kevin on keys, along with seeing old friends, AND feeling great, was thrilling.  Wierd, for me also, in that i did not have a drop to drink and i was probably higher than anyone in the place.
>
> I thought i might be worn out the rest of the week, but not so.  As my friend Cindy said to her husband about me, it was like i was almost even "Giddy".  I like that description, because it is pretty much how i've felt this week.  It is odd.   I have even felt well enough to exercise 5 times this week!  1 elliptical, 3 easy jogs and one easy bike ride!  Oh yeah, and a few Squish Ups :).  Don't worry.  i never exercise to the point of feeling worn out.  I usually feel just barely tired at the end when i stop.  I do a lot of walking during the jogging too.  Due to my inherent skepticism, however, i am preparing myself for possible return of the downs.  But, i'll take these ups any day!
>
> Round 3 is on Tuesday 1/4/11.  I think i'll drive myself this time. :)
>
>
> Emily
> 1/2/11