Phase I (A-C) Round 3 Glory Days!

Phase I (A-C): Round 3

(11/23/10)

Wow.  This shit really doesn't get more fun or more interesting with practice.  I still would not recommend this experience for anyone, but it's it's what I've got.  And, as I've already had my share of experinces and opportunities for in-depth soul searching and study in the meaning of life, I did not really feel that this experience was necessary and possibly even misallocated by whatever power that be.  Best described by my sweet attorney running buddy who asked "to whom do i log my complaint...to whom do i report this error." 

With all that said, at least I already know the moral of the story of Lance armstrong's book it's not about the bike before reaching page 50 while the rest of you may need to complete the whole book.  (For the record I plan to complete it too because it is a good read and I enjoy impressing myself with my actual knowledge of cycling.)

Yes, I (I realize that I am often a total smart ass and many of you will likely think I am writing this in mockery but I'm not) I am honestly privileged to see and experience first hand true compassion and endless giving and thoughtful support.  I have also had the chance to confirm suspect idiocy in some cases.

I will leave all that alone for now.  Due to the fact that I've completed only 10 weeks of what has promised to be a 16 month, shall I say it?  Journey? No. I know many people are fans of the word, but not my taste, except as an 80's band name. Ordeal? No.  Process? Like the word very much but too cold.  I'll stick with "experience" for now.

Finally, on to the nitty gritty.

Week 3 of round 2 was going very well.  Had the awesome last minute kid free trip with Rochie to Bandera and my beloved hill country state natural area.. Trail running Mecca.  That weekend i was able to run/hike (trail run) 10 miles with Richie if you believe that.  (Richie i mean) I was doing ok, then this left knee thigh thing started hurting and my leg giving out.  Very scary especially on the downhills, and ruinous to my plans to school richie on the downhillls.  I really was so happy to be out there that I even let go of that. 

It was a beautiful day.  We got back to the car. I unfolded my chair sat down and opened the beer that we were going to split.  I drank a sip and relaxed.  Then, up came the bee that stung the Hell out of my right arm.  We laughed at the ridiculousness of the situation.  We decided to get back to the hotel and shower and this bee sting thing would pass.
Well, no chance.
We unloaded the car and on my last trip to the car, up flies the bee that decided to sting the f... out of my left calf.  You can only imagine the colorful yelling I was doing out in that parking lot. 

Anyway, after 5 hours and 3 advil, the stings subsided somewhat. Enough to enjoy laying on the couch and watching 2 movies with Richie.  Simultaneously, of course ( the movies).

So now, up to day 1 round 3 A-C which I found out is the exact terminology the oncologist uses, as he proceeded to incorrectly dictate my diagnosis.  I'd love to see the look on that transcriptionists face as he/she finds his/herself typing a certain diagnosis while a second voice is in the background practically yelling..WRONG.
Needless to say that was a bit of a disappointment for me regarding my oncologist.  Mom did point out that at least he listened when I told him I thought I had cancer in my femur and he ordered X-ray of my hip, femur, and knee.  Yea....
The great news is that they did not find a tumor there.  Waiting for those results, along with the severe headache on days 4 and 5, the disappointment in the medical profession, my recently risen " muffin top", and the fact that i just put a "dew not" rag on my head, is what made this round challenging. 

The good part about this round is that I feel pretty good now,  I realized that my husband does love me, and I have had some really good laughs in the face of cancer and recent unemployment of several of my friends.  Hey, drip coffee ain't so bad.  There are "Glory Days" still ahead!
Emily

Phase I (A-C) Round 2 Wedding

Hello All!
I have finally achieved a group list for this email from my phone.  Most of you know by now that I have a new phone and phone number....Dustin the 20 yr old phone geek at the AT&T store was impressed by the luck of my random draw at this cool #.  Anyway, now that I've got this cool new phone it's best to email me here with the powerhowell@gmail.com address.

So... Chemo round 2...
Did not go as well as I had hoped. Some parts better, but mostly worse. 

Met with the PA instead of the doctor due to my necessary change of tx day to tuesday so i could go to my running group (I mean, help my special needs child). I like her very much, generally. However, it was she who ended up informing me during the Chemo that my cancer is Her2+, which means I Now have to do Chemo for total of 1 year and 3 months.  So here is the approximate new schedule:
*4 rounds of A-C 3 week interval (same)
*12 weeks of weeks of WEEKLY taxol plus new drug herceptin- due to new HER+
*2-3 week break then surgery
*Resume Chemo herceptin on 3week intervals for 9 months.
So, the good news according to the PA  is that Her2+ responds well to herceptin.  According to her as well, the taxol and herceptin side effects are not as severe,yet tend to be cumulative. 

Moving on, day 1 was much better because we did not go to that godawful wig store and rested instead. Day 2 I felt pretty good in the morning, but was already scheduled to get the magic juice at 10:30.  Majic juice probably helped..I had a really nice evening with richie and the kids...but , the experience was far from magical.  Anti-Disney even.  During the hour wait, mom was in a political argument with an 80 year old lady over the death sentence, who later explained that she was in her second battle with the breast cancer and her mom and sister died from it. Didn't anyone tell her that you are not supposed to tell people who are fighting cancer stories about cancer that end in death. Even if it is your second time through it!!  So, once the old lady,along with my severe time based anxiety, had me crying, Mom stood up and announced that we were leaving. I was very proud of her at that moment and realized that I did get some things from her.  Suddenly they took me back.  While I don't believe that they got to me any sooner I was thankful to be rid of the old woman (no not mom- the other lady).
 

 

So, day 2 overall better, day 3 about the same, day 4 worse. 

 Day 5 ok and was able to attend and enjoy Jenn and Johns wedding which was a beautiful outdoor wedding at Lockhart state park. I even got to walk a bit on a short trail down and up a big hill.

 Thank goodness Mom and Derek stayed and took care of the kids until Richie got home from the Livestrong ride.

Day 6 tried to go jogging with Cindy R. At hill of life, but ended up walking the whole thing and then was pretty much worn out until about 5 pm. 

P.S. Thanks to everyone who donated for his cause-he raised a ton of cash.

By Monday I was ok to go to work, but still too tired to exercise.  Tuesday I was able to exercise easy and feel pretty good today.

 

Well, probably more than anyone wanted to know, but what the hell.  Thanks to all again for all of your support, food, hats, help with the kids, etc.

Emily

Phase I (A-C) Round I - Here We Go

Phase I (A-C) round I
Before and After
10/19/10

OK.  The weekend was beautiful.  Saturday got to ride bikes and eat Breakfast with Richie, then relax.  Sunday, got to run one of my favorite Trails: HOL to Moonshadow with one of my favorite Running friends and cool off in Barton creek, then eat tacos.  Then, hung out again at the Creek at Gus Fruth with Richie and the kids.  It was absolutely perfect.  The creek was clear, sparkling, and cool.  Fun was had by all.  Then, Mom came with dinner and hung out and discussed the big day.

Monday- Yikes-
It’s all really too much to speak of, but I’ll try with the energy I have.
Prior to the actual hook up of the Chemo, I was thinking it, but I thought funny that Mom said it out loud..”Here we Go”.
Then, if you saw Pulp Fiction, you can imagine how the needle was inserted into the port.  Wow- she was the sweetest nurse, but really did rare back, aim and stab.  And my leg did jump up and almost kick her in the head, but thankfully it all worked.

The time on the line was about 3 hours. Pretty relaxing overall.  The wig store was actually MUCH worse, and pretty much kicked off the  downhill plunge for Monday night. The anti-nausea drugs worked, but quite a headache and a very fried feeling.   I was very out of it and at one point did wake up laughing about how the  Cancer card does not really work at the cancer clinic, but the Disabled Child card does.  Mom had pulled that card when trying to finagle my times for my next chemo.  Mom did instruct me to DEFINITELY NOT pull the running club card which was the real reason I needed to move my time to Tuesday.  I could see her point and stuck with the DC card.

Tuesday was a bit better, did get out to get hair cut, but did fall asleep at the salon. Was able to hang out with the kids a bit in the evening.
Wednesday,  I got up, took shower and got my clothes on for work, then laid down and really didn’t get back up until 5:00 pm.  Just so weak and tired.
Finally got up, thanks to delivery of the Velveeta from Lisa, to make a grilled cheese sandwich. (I have a long history with Velveeta and it’s unstudied healing properties).   Went outside with Ace for about 20 minutes, then tried to walk for about 20 minutes- I could barely move, barely made it back to the house, then back to bed 6:45 pm until this morning.
At work today.  Very weak but here.  Hoping tomorrow will be better.  Next Chemo Tues. 10/19/10.
Thank you all for your thoughts, prayers, food, and help with the kids!

Emily

9/24/10... 3 days 'til first chemo

Hello All,

Just a note that first chemo starts Monday 9/27/10 8:30 a.m.  See the oncologist first then apparently 10 minutes of the A drug and 2 hours of the Cytoxin drug.  Mom will be there with me. Then, possibly off to wig store unless vomiting. They said my hair would fall out between 2-3 weeks of this first treatment.

I made my case that I should be a candidate for the Blood cell booster shot whether my counts were too low or not based on my addiction to exercise and my 2 snotty nosed kids, but the nurse just sort of laughed.  When I said “ I will not be happy if I am not able to exercise due to low counts” she simply stated “I can see that about you”.
She also said that some people just get right through this without much trouble,  then she said “ I can see that happening it this case- oh I don’t usually say that out loud”.  Well ,that made me feel good anyway.

They say that Chemo can decrease your appetite.  We’ll see.  Nothing’s ever done that to me before, except that one time Richie broke up with me. Correction: One of those times Richie broke up with me.

As far as this port is concerned, it is still sore, but I still plan to jog on day 11.  They said to wait 10 days.
Not to worry, I’ve kept up with stationary bike, spin class and stair machine.  But, they were right about the jogging. Because, as you might have suspected, I’ve tried several times the elliptical and jogging, and it just wasn’t right, so back to bike.

Anyway, I’ll be off work Monday and then see how it goes Tues. and Wednesday.  They said day 2 and 3 are often the worst.  Wish me luck-

Emily

Control Issues Vs. Methodology-Update

Control Issues Vs. Methodology-Update

Sent: Monday, September 13, 2010 10:18 AM
Subject: RE: Control Issues vs. Methodology-Update

Hello all,

Thanks to my baseline anxiety,  plus heightened anxiety due to Cancer and the support of certain OCD friends,  I went into full panic mode Friday pm around 4:00 and began calling every doctor I know.   At 4:50 pm the oncologist did call me back and told me he just received the pathology report on the hormones, and it is ER+ -which is apparently good because there are drugs for that.  “That is your gift for the weekend”, he said.  And, as crazy as it sounds, it really was a gift for me to have spoken with him and have some… not to quote the worst president in the history of USA (given my limited knowledge of history, of course) …resolve.
Anyway, he told me that he spoke with the surgeon “discussed your case over breakfast” and they decided to do chemo first.  He instructed me to call the surgeon on Monday to make appt. to get port/cath.  placed for use with the chemo, and we’d begin the chemo sometime next week.  So, I have an appt tomorrow with Surgeon to discuss  this port placement, etc, then on Wednesday at 1:30 p.m.  to actually put it in.    Apparently it takes 30 minutes, but has to be done at the hospital.  Then, I have the Oncologist appointment on Thursday 8:00 am, which Richie will be at.  His job is to make sure that the doctors understand that I am addicted to running, and that  I too (like Lance) will require EPO treatment during, or after the Chemo, and that other details/plans are laid out and written down.

Thank you all for hanging in there with me.  Again.

Emily

 

PortaCath and Pre Chemo

PortaCath and Pre Chemo

PortaCath and Pre Chemo Treatment 9/13/10 ish


Hello all,
Saw Surgeon, Dr. Lamar Jones, this Tuesday am to discuss placement of PortaCath. http://en.wikipedia.org/wiki/Port_(medical) It is basically a disc that is placed under the skin that replaces having to have an IV inserted for chemo and blood draws.  Yesterday had the thing put in.  It turns out it was a small day surgery.  More than I had expected, but still like day spa treatment compared to the Biopsy.  I was put under sedation for the procedure, got a good nap, then got pretty buzzed on Percocet afterwards and had P.Terry’s because it is hormone free beef, and therefore good for you.  Then some pain later, but tolerable, once I laid down again.  Thanks to Cindy being there it was mostly enjoyable chatting and catching up, and keeping my mind off of things. 
Today, met with the Oncologist, Dr. Sandbach, with Richie there to take notes and help me ask questions.
So what I know (take that l word with a grain of salt please) so far is:
Ductal Carcinoma.  Invasive.  He did not stage it.  It’s at least Stage II because it’s about 5 cm and in the lymph node.  Most likely stage IIIA.It’s ER+.  It will be chemo first, then Bilateral mastectomy and reconstruction.  Radiation is undecided at this point, but Oncologist and Surgeon lean away from it if all is going well with the chemo and surgery.
On Monday 9/20/11  I’m scheduled for CT scan of abdomen and MRI of brain to see if we can see anything anywhere else.  On Thursday 9/23/10 we go to Chemo instructional class for more detailed info on chemo.

9/27/10  will be the 1st  Chemo treatment:
There will be four rounds of a drug called AC in 3 week cycles to = 12 weeks.Then another 12 weeks of another drug which I cannot think of the name right now, starts with a T.
24 weeks of Chemo total, then 2 weeks recovery, then Surgery.
Then apparently 5 more years of an oral drug that the oncologist says is no problem.
If the Genetic BRCA test comes back (+) for genetic mutation, there will be more drugs for up to 10 years, maybe, and the ovaries will need to come out at some point.
I guess that’s all I can think of right now.Emily

Control Issues vs. Methodology

From: Howell, Emily
Sent: Friday, September 10, 2010 11:23

Subject: Control Issues vs. Methodology

Hey guys,

I’m writing a quick email just to update everyone.  My appointment with the Oncologist today was unfortunately postponed until next Thursday.  The reason given for the delay was that the pathology report was not all back yet.  They thought it would be.  They are waiting on the results of the hormone receptors.  They need this information before making a full plan of action.  This should be to the Doctor by Monday, but the doctor is out until Wednesday, so the appointment is now scheduled for Thursday 8:00 a.m. next week.  I’m sure you can all imagine how I reacted when the poor (stupid) girl who had called me, asked me if I was OK with that.  Rest assured that I did make this girl come to near tears.

Then, after a few tears of my own,  I succumbed to the method.

But….I am still driving this train, damn it.    I will show up to that fucking appointment on Thursday.

Emily