Phase II (T-H): Round 1 Bone Pain

Phase II (Taxol Herceptin): Round One

Round one of weekly for 12 weeks. Done. Really hard to believe I'm going to be doing this for 11 more weeks.  I just keep trying to liken it to the 50 mile trail run that I had originally planned in March this coming spring. As I said to my trail running coach, Joe Prusaitis : "Joe, I says, I had originally planned Bandera 50 K in January and Nueces 50 Miler in March, but now I'm going to do Chemo and surgery.". So, I would have been doing something difficult for the next 11 weeks anyway. (Would have been a lot more fun though.)

As I think about writing updates, I keep trying to find ways to stay positive and not come across a downer like my co-worker who is older than I, who just recently finished a very similar 1 year 3 month plan to mine.  Every time I talk to her she cries about what i am going to have to go through and i end up consoling her.  The other day, whin i finally began to experience the severe bone pain that she had mentioned on our firsxt talk, i thought of her and it made ME finally cry.  The more i think about her now, the more i want to keep from crying.  I realize theat when i speak to her that i just want her to say something positive about how she is doing now that it is mostly over. (She still has 5 years oral drugs).
With that said, parts of this round have been less than pleasant, but there were some good parts.  The actual day took much longer than expected.  Previously they had painted a  much more pleasant picture of the chemo day with quotes like "yes,you should be a able to drive yourself, and...you might only have to miss 1/2 a day of work".   i had pictured myself In/Out and on to Christmas shopping by the afternoon.   The first delay included a conversation with the Nurse Prationer who was leaving it up to me whether we should do the chemo today or wait until next week due to my Blood Counts being lower than the recommended level.  She initially gave me the option of going ahead with it, and then taking the 3 days of neupogen shots (blood booster), or not, or just waiting.  As we headed off for the chemo, she mentioned that the clinic was closed after tomorrow, so i'd only be able to get one shot, so we'd just go without the shots. Well, here's where my bit of skepticism did pay off a bit.  Due to the fact that i was not totally sure that they were telling me the truth, especially about the driving, i had arranged for my friend Lisa to drive me.
Thank Goodness! After about 2 hours of being Gorked out due to the large dose of Benadryl that they gave me, i woke up and Lisa's sweet Mom, Virginia was sitting there and fluffing my pillows, getting me Sprite, and basically holding me up as i shuffled to the restroom.  she was there to replace Lisa who had to go because the day ended up  being severeal hours longer than expected.  (Don't be upset.  Lisa had to leave in order to help move furniture into a home for a family who had lost the father and all of the furniture).  Virginia also mentioned to me that i could get thosse shots at the hospital, and maybe we shouldn't make a medical decision based on whether the clinic was open or not.  I spoke to the nurse in that regard and then we had the shots set up at another hospital.  Virginia also drove me home and we met Lisa back at my house.  Lisa ended up spending the rest of the evening with me to help me out with the kids on this, Richie's band practice night, which was a mental/emotional lifesaver as much as anything.
I've had some ups and downs throughout the week.  Luckily the ups did land on Christmas Eve and Christmas day which turned out really nice.  We had Christmas at our house for the first time and i really enjoyed it, and i think the kids and other adults did too.



 I was healthy enouth and lucky enough to be able to run a 5 mile trail run on the Greenbelt with Richie on a very near Freezing day, which i love.

 The downs included some bone pain and pain in my mouth that feels like i've been drinking battery acid.  Those are both subsiding somewhat now.

Round 2 was moved to tomorrow due to an error on my part in my work schedule.  I figure it also gives me an extra day to grow some neutrophils. Everyone cross their fingers, pray, wish, ask Santa, do whatever you do best, to get my neutrophils up so that i do not have to take anymore of those shots.
As far as exercise, i've lowered my self-expectations once again.  I was previously expecting 4 day per week exercise, outside of 1-2 days on chemo week.   Now expecting closer to 3 now that I'm doing weekly treatment, but we'll see how things go.  Maybe they'll get easier.  I'd love to maintain 4 days per week with a goal of still being able to run 5-6 miles at the end of this round.
Hope You All have a Happy New Year!
Love, Emily
12/28/10
Dad's Birthday
P.S.  My hair started growing back today!

Phase I (A-C) Round 4 Cautious Optimism vs.Skepticism

Phase I (Adriamycin Cytoxan):Round 4

The doctor said I would not be the same person after cancer treatment.  I hope to not only be two years older, but 2 years better.  Possibly thinner (doubtful at this point) and maybe even a faster runner? Wishful thinking I guess.   Anyway, this has actually been quite a productive round for me.  Due to the fact that I did NOT have a headache this round! Hallelujah! I was somewhat more functional during week one due to lack of Headache that, despite severe weakness leading to abdominal sprain (which I of course thought was cancer) by week 2 I was significantly ahead of previous curves of recovery.  I believe that the Doctor’s statement that the tumor is in the “responding very well to treatment” category lifted my spirits, increased my hope, and decreased my anxiety.  Along with the awesome nursing care I received from Richie this round, I was back to jogging 3 miles on start of week 2 and 6 miles by end of week 2! Richie was a master at keeping me hydrated. I think that helped the headaches too.

 

Along with being ahead of the exercise curve, I’ve been working my way up the technology curve, as well.  I’ve purchased a new laptop, learned how to use iTunes, how to download photos and videos from my phone to the computer, move music from the computer to my iphone, and a whole host of other things.  I even set my computer up on wireless at my home, almost all by myself.  (With just a little emotional support at the end from my friend Mike R., who took 2 hours out of his Saturday to educate me on how to use my new computer!  Thank you Mike and Cindy!!).
On a personal note, I’ve continued to maintain a good relationship with my husband (?) enjoyed my 2 kids, and honestly enjoyed the holiday season for the first time in a while.  I’ve even re-connected with my Uncle Terry who is my closest living relative on my Dad’s side.  I always enjoy talking with Uncle Terry, because I have a lot in common with him, and Ace does too.
Its funny how during the first week after the A-C treatment, when I’m lying there awake yet really unable to move, how my mind races.  I think that the Adriomycin drug is somewhat of a psychedelic.  I sometimes see faces….they are in black and white and like 3 dimensional negatives, but look exactly like the people that I see.  It’s kind of cool.  I also lie there and think really crazy (or insightful) thoughts that seem less interesting by week 3.

The one thought that I kept perseverating on this time was the idea of Cautious Optimism versus Skepticism.   I’ve never really thought of myself as an optimist, but I’m not exactly a Pessimist or full on skeptic either.  I’d like to be optimistic, but that, in my opinion requires blind faith.   So, anyway, I wasn’t really sure if Cautious Optimism was something I made up or if it is an actual thing….So I, of course, googled it.  There is very little out there on Cautious Optimism….some stuff about cautious optimism regarding the spawning of salmon, and recent increased use as a media phrase.  The media skeptics see it as a cop out.  I liked the California Psychics opinion that it is OK to be both cautious and optimistic at the same time.  Anyway, this is how I was feeling about my cancer treatment.  Optimistic, yet cautious and still desiring objective proof.  I feel that it is an improvement over plain fear and depression.  Even though the doctor made the statement that the tumor has shrunk, and this did raise my spirit and my hopes, and even though I can even feel it for myself (I think), I still also  want to see the follow up MRI, and continue to seek more objective proof.  I have learned through my own actions and reflections, though, that I am more of an optimist than I thought.   Once, on day 3 or 4 when I was still very out of it, my friend Chuck texted me…”How are you doing E” and I simply replied….”Lying in bed with clothes on”. I had gotten up, showered and dressed, getting ready for the day, and then proceeded to just lie there the rest of the day.  I realized that that was an optimist’s move.
After my last not  so impressive visit with the oncologist, I had told his nurse that I needed some more objective proof of my odds.  This time around she handed me a printout of my odds.  In summary it was that I have a 76 to 80% chance of being alive in 10 years.  I thought that sounded pretty good.  When I told Richie, he said…”That’s not good enough”.  I thought that was a bit pessimistic, but at the same time made me feel good.


Regarding my schedule:
Tomorrow I start what I’m calling Phase II:  this is the start of weekly, for 12 weeks, chemo/infusion of 2 new drugs Taxol and Herceptin.  They say it will not knock me down the way the first 2 drugs did, but will be somewhat cumulative.  Some side effects could be worse at the end of the 12 weeks.  Then a short break, and then the surgery.  The doctor said the possibility of radiation will be determined on whether they still find active cancer during the surgery, etc.

I hope everyone has an awesome holiday season! I'm looking forward to our first christmas at our house!

Love,
Emily
12/20/2010

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

History of Ballotable Records

History of Ballotable Records:

Pronunciation: bal-ot′ă-bĕl   (short o, like lot)

But, I like to say: ba lo ta bel (long o, like lo)

Ballotable is a word that I've been attracted to since I learned it back in 1993 when I was in PT school.  It is primarily a medical term, meaning: adj. exhibiting the ability to rise and fall in a floating manner.  Capable of exhibiting the phenomenon of ballottement. To be palpated and bounce back.   A knee cap and fetus in utero can be ballotable in medical discussion, for example.  I like the ideas of floating and bouncing, down and up, and particularly of bouncing back.   I originally used “Ballotable Records” with The Knievels’ first CD, “!Que Sabor!”, which was actually produced by Sweatbox Records in coordination with The Knievels themselves. The Knievel powers that be (Richie and John) let me use my little Ballotable Records label design and put it on the back side of the record cover to represent our part of the production.  Even prior to “Que Sabor!” I had wanted to own my own .com called BallotableRecords.com and just never knew how to make that happen. I never knew why I wanted that, I just did. ( I do own that .com now, but ended up using the blogspot site/address because it seemed much easier to design the site.) Anyway, when I decided to start blogging, I, of course, immediately thought of Ballotable Records.  I’m sure it’s a bit confusing with the “Records” part, because it is not a musical recording, but I thought it was still applicable, and possibly even more so, as a record of my current life during treatment for Breast Cancer.   You will find that the first several entries are simply status emails to family and friends but then the blog begins to take on a life of it's own soon after.

Ballotable Records
Of Cancer and Trail Dreams


Now a Breast Cancer Blog