Phase II Round 10 Jackpot

I’ve been thinking recently how the concept of “diminishing returns” describes how I’ve been feeling about this chemotherapy treatment.  I feel that I am holding strong on the course of treatment, yet keep having to put forth more effort to maintain a basic level of function, and a positive to midland attitude.  At the same time, I’m receiving little proof of progress, and more feedback (from my body and my husband) that my ability to maintain these goals is diminishing.  

While recently crying in the CT Scan tube with visions of “Yer All Fluff” dancing in my head, does initially seem like solid proof that I am no longer tough, and therefore, likely cured of cancer, I've again begun to desire more medical proof.  I have begged for a mammogram or something beyond manual palpation to provide proof of a shrinking tumor, with no avail.  The oncologist and even the plastic surgeon now, say that a mammogram does not provide a good look, or any information that would we could base any decisions on, and that we will need an MRI.  Because I believe that the MRI is the most clear diagnostic tool, I will accept that.   Today they clarified that we would get an MRI one week after last Taxol treatment, which at this point is still up in the air, due to the neuropathies that I am developing.  The current plan is to simply check on me next week, with the possibility of this week, or each of the next two weeks being the last week.  During this week, however, the Oncologist plans to speak with the General Surgeon and the Radiation Oncologist in order to begin the ball rolling in case we discontinue this treatment early.  The Radiation Oncologist will look at the mammogram and then the MRI and assist the oncologist in deciding whether we should begin to plan for radiation, which would be after the surgery.  They will begin to plan the surgery date 3-4 weeks from the last Taxol treatment.  Also, any information that they find during the surgery and biopsies/ pathology tests that will be run during the surgery, will provide helpful information in decisions regarding radiation.

While this week started out a bit more difficult, as I mentioned in my previous post, there have been some great things too.  My son, casted, hooked and reeled in his first fish ALL on his own!  Port O’Connor here we come!

Adaline and I got to take a long 4 wheeler ride together in perfect weather at the Rayanch. 

We saw a Mexican Bald Eagle, and a black tailed deer bounded alongside us on the creek’s edge for 100 yards or more.  That was very exciting. 

We had a visit this week from Richie’s Mom, Grammy Ju Ju that went well, and I got to eat some great food, including steak, Shrimp Ceviche and Cake! 

 The weather was beautiful this weekend and Richie and I got to go out on a date and hang out with my friend Chuck, and his wife Kristin and his brother and hear entertaining tales of the Austin Marathon and Half Marathon that they participated in that day. The weather at both this Marathon and the recent 3M half marathon (either of which I could have potentially participated) was horrible.  The temperature was around 65 degrees, and the humidity was very high at both with an added headwind at the end.  This is my personal racing nightmare.  So, while I did feel a bit sorry for those who had trained for months specifically for each, it did make it a bit easier for me to miss out on those. 

I took a bit of a down week this week with exercise due to the strength required to carry the informational and mental/ emotional load that I received on Wednesday, in addition to just not feeling as well in general, until Saturday and Sunday.  I was able to jog 3 times (one nice trail run at Hill of Life, of course), and do yoga twice.  I haven’t missed a Tuesday morning run this Phase and, while difficult at times, I can still jog for 60 minutes, when rested and feeling well.

Today, Richie passed the last of what seemed like hundreds of exams to become certified in production and inventory management!  And still has a job!  Way to go, Richie!   

I am hoping that at some point near the end of this long arduous course, I will receive the ultimate return:  Some proof of a cancer free body and the ability to return to physical and possibly even mental well-being. J However, after my most recent Yoga session, in which I set my intention on relaxation and happiness, I’ve been reminded that my pot of gold is not only to be found at the end of the rainbow.  It is also within the rainbow itself.   

If you didn't already agree, take a look at this:

http://www.youtube.com/watch?v=Fte3ph-PjaE&feature=youtube_gdata_player

Emily

2/23/11

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 9: The Downtube Shift

Phase II  Round 9: The Downtube Shift

It’s funny to me, that yesterday, when i told my friend Cindy R. that my blog page was up and running, she said ... “You know I was going to ask you early on if you would consider a blog, but figured that you would... I interrupted, and said... “That I would find it stupid or dorky”....Ahh you know me too well. J  See, this is the kind of thing that Cancer, and all if the bullshit that goes along with the treatment, will force one into. I mean, allow one opportunity for change.

It IS true that I have not been a big fan of the word blog.  In my mind it's always been blahg.  As in blah blah blahg.  Not far from Seinfeld’s yadda, yadda, yadda.  You know, the unnecessary crap, in-between the actual points.  The stuff one would just as soon skip over.

Possibly not unlike: the bloody nose that won’t quit, the decline of fine motor control, and the rise in bone pain, the painful toenails, and the thickening, curling fingernails,  the unreasonable intercourse, chronic bowel issues, and cracking earlobes,  the muscle spasms and severe fatigue,  and, the numbness in the feet and hands.   The crap that just IS, in between chemo treatments, doctor’s visits, and life.  I’m weak, I’m tired, and frankly, when my son reminded me this weekend… “Mom, we still have you”, and, as I was responding....”Please hold on tight Son, I’m gonna need it!,… I began to realize that I am a bit scared, that much more anxious, and would just as soon skip over this stuff all together.

Hence, the BLOG.   The physical construction/design of the blog page itself did help me through at least 12 full hours of ignoring this situation while pretending to focus directly upon it.  Now that I am an official blogger, I can admit that I have read a few blogs and enjoyed them.  Then again, I'm still not on Facebook, so my experience in snooping, electronically, into others' POSTED lives is somewhat limited compared to the average 21st century person.  I must also admit the thrill I experienced when my page clocked its 100th view.  Even though it was by me, and likely at least 50 or so of the other hits were me, as well. 

Today is the 9^th round of the (T-H).  Only three to go.  I can see a flicker at the end of the tunnel.

Yesterday I had a consult with a plastic surgeon Ned Snyder, M.D. to discuss reconstruction after bilateral mastectomy.  I mentioned last week, the D.I.E.P. reconstruction surgery that I was interested in. They use the fat and skin from the abdomen and shift it upward to form breast mounds. They do not cut or move any muscles. 

http://www.snyderma.com/Breast.htm 

Dr. Snyder is one of, I believe, 3 people in Austin who perform this surgery.  The consult was overwhelming, yet entertaining.  I was impressed by the doctor.  Doctor Ned Snyder and his wife Renee have their practice together.  She is a dermatologist, and he is a plastic surgeon.  I’d been to their office before to see Renee and was very impressed by her.  She’s not only nice, and smart, and naturally beautiful, but I must say she had a nice figure.   Richie had referred me there after he had a surgical removal of skin cancer on his face.  He liked Ned. “That guy has his shit together”.  Richie thought that I ought to check to see if Ned did this surgery. “Did you notice how beautiful his wife was?”  Even before I was able to check it out, the Nurse Practioner had given me a list of recommended Plastics guys with Dr. Snyder’s name on it, so I went ahead and made an appointment for a consult.  Like I said, I liked him.  Maybe it was because, when I disrobed for the exam, he said, “oh, you are pretty thin”.  J You know me, I immediately thought, “This guy really knows how to flatter a girl”.  Then he said, “You have “D” Cups, but you have a “B” belly.” 

Really? 

Initially, I thought this was another compliment, and further attempt to inveigle me to become his patient.  But then, I realized that really there should not be a cup size on the Downtube.  The long of the short of all of this is that, while I do have a cup size where one shouldn’t, it is not quite enough to fill the cups that Richie was hoping for.  So, I said, “But what about all this stuff on the side and back??”  Apparently they can’t use that right away for some reason, but after 6-8 weeks they might be able to suck some of that out and inject it where we want it.  I’m really unclear on how that works, or if it is a temporary fix.  To me, it seems that if that worked, that would eliminate the need for implant augmentation, for everyone, but the thinnest people. 

While I have the infusion today, I have my appointment with Dr. Sandbach, the Oncologist, tomorrow due to his schedule.  I’m hoping to begin work on a plan for the timeframe of the surgery, etc.  At this point it is looking like end of March, or beginning of April.

This week was not all bad.  I did get to go out to see a trail that I have wanted to see since I heard about it back in August, just before my diagnosis. It’s out off of 2222.  It’s been called The Stairway to Hell.  While the stairs were a challenge, the view at the top, or near the top, was beautiful. I also I enjoyed jogging and talking with a couple of Tejas Trails women, Alicia and Diana, that I had not run with before.  On Sunday, Richie and I took Adaline and Ace down to the Greenbelt near our house.  It was a beautiful day.  Ace proceeded to jog, yes actual jog, for at least 10 minutes.  He was pacing himself like a champ.  It was so cute.  He even tripped over a rock once and I reminded him to lift his feet, and he did.

Phase II (T-H) Round 7 and 8 Yoga?

Phase II: Round 7 and 8

Well, I did it.  I’ve signed up for Yoga.  A mere 3 yoga sessions ago I might have considered this somewhat of a failure, despite the fact that I have always believed yoga to be a good idea for other people.   My first session, just prior to the panic attack that did ensue after the 3^rd or 4^th Gong (which I believed must signify the letting out of class) I have to admit that I did actually achieve a more relaxed feeling (while being still, and outside of sleeping) than I can remember experiencing in years.  It took me a few weeks, a few mind games, and that one drop of water from my friend Cindy S. to get me back to that second class.  The mind games included convincing me that I can count this yoga once a week as my 5^th day of exercise -even though I do not really consider it exercise.  A “Bonus” if you will.  Now, after the third session, which was a more advanced class, I’ve regained my ability to do a headstand, which is pretty exciting for me.  You, and my good friend Chuck, may be thinking that that is just silly, unnecessary, and bordering on dangerous at this time in my life.  I would actually agree, again, for other people.  But, if you know me and my genetic makeup, you might be aware there are a few things that I am simply compelled to do.   These are: to be suspended in air, like with jumping very high and flying, and to be upside down.   As a kid I spent hours laying upside down on the stairwell, and as a teenager, upside down in a handstand often during basketball practice, and in the locker room before games.  I remember many times the coach getting on to me for that, because it just seemed odd to him, and I’m sure others.   I believe that the desire to fly is one reason I love trail running.  Running down those hills is very much like flying.  

As you can probably tell from my rambling about Yoga, this week was a better week for me.   I got that “5^th”day of exercise, I was able to run almost 8 miles this morning, (which is the most I’ve done for a few months) and the chemo side effects have seemed a bit less this week.  I’ve almost organized my medical bills from 2010 and I’ve almost mastered the ability to format a blog page BallotableRecords.blogspot.com.  Still a work in progress. 

 One of my trail running buddies completed his first 50 miler this past weekend, which I love hearing. Thanks David J. for your help with the blog, and for completing that 50 miler! Our good friends Chad and Eve (and Jason) completed their EP and CD release while also raising a 15 month old-impressive.  A new friend of Derek’s (my Stepfather), found out his brain tumor was benign, soon after Derek himself found out that he did NOT have prostate Cancer, even though it does run in his family.  And, we were able to have a Super bowl Party with friends, to celebrate the end of that season, John and Jenn’s Superversiary, and the perfection that is a football shaped cake ball with yellow cake and chocolate icing, dipped in chocolate and placed on a stick.  J

 I’ve learned a bit more about breast re-construction plastic surgery and I’m getting closer to choosing a surgeon.  After today, I have only 4 rounds of this Taxol-Herceptin left.  Then, I get a 2-3 week break, to get blood counts back up, and then surgery.  The great news is that there is a new procedure that actually takes…. get this……FAT from the abdomen…YES, MY ABDOMEN, and uses that to mold a breast mound! GENIOUS! So Richie, WE just MIGHT be looking at Ds again!!

Also, the day that I’m sure many of you, and even myself, were somewhat expecting, did come today.  That being the day that I would pull the cancer card/comment inappropriately. Fortunately, it was not too painful or too difficult to recover.  Here’s how it went.  The nice young nurse technician, after weighing me, began talking about weight.  She mentioned that if she could just get all of the stuff off the front, she would be doing alright.   I, as you might suspect, said; “well, you could just get breast cancer and then that would take care of that”.  She went on to tell me that her likelihood of getting breast cancer was very good because her grandmother died from it, and her mother who is in her 40s is currently on hospice.  I did immediately let her know that I was sorry to hear that, and recommended that she get checked often and routinely. She stated that she was BRCA (-)…The genetic test for Breast cancer.   But, then again, so was her mother.  I again let her know that I was sorry to hear that and hoped the best for her.  She said that she did not really know her mother well, so it was not too difficult for her to deal with, and on the positive side of things, she has gained the ability to feel free to live her life to the fullest every day due to her family history. I said, “As we all should”, and I put my card away.

                                                                                    

Emily

2/8/11

I never realized how bad I wanted to go to Puerto Rico until this week! MY new PR goal!

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