Days 10, 11, 12: Finding Dr. Wrong

Posted on by caspeakman
Dr Wrong

I realized tonight that picking the right doctors for my medical team is a lot like how my guy friends select their fantasy sports teams – and if I hadn’t already used the photo, this would have been the perfect blog post for my hot football player. Oh well.

First, you rely on the experts – The guys watch what the recruiters and coaches are doing to build their pro teams for the coming season, much like we take the referral paperwork or appointment card given to us by either our oncologist or primary care physician and trust that the surgeon they have selected is the best one for our procedure(s).

If that appointment is at least twelve hours from the time you get the surgeon’s info, odds are the next step is Google. Looking at the medical practice’s website, checking the feedback from other patients on assorted sites, checking credentials, read articles by or about the surgeon and forming an opinion.

If there are no big red flags, you go to the appointment – and this, this is where everything can change.

And that is completely okay – It’s your body. Nothing is more important. This is your life. Don’t worry about hurt feelings. Do what is right for you.

In fantasy sports leagues, guys don’t get face time with their picks, but they can watch interviews and gauge integrity, drive, passion and to an extent ethics – for example, if the player is in handcuffs while he’s talking to the reporter, there might be a bit of a problem.

I did my research before my appointment. Dr. Wrong had formerly been a Medical Director for a hospital breast cancer center, had numerous lovely comments about how kind and caring she was on multiple review sites, and solid medical credentials.  She seemed to be an excellent choice on paper.

In 3-D reality, well, not so much.

I arrived slightly early for my appointment so that I could complete the New Patient paperwork that the front office staff had been unable to either fax or email to me to do ahead of time. The waiting room was filled to the point of being standing room only. The receptionist said she was sorry, but that everyone had arrived for their 4pm appointments at the same time. All those people had the same appointment time I did. Even allowing for family groups there were a minimum of five people with simultaneous bookings. It was so crowded I had to take the clipboard out into the hallway to sit on the floor and fill out. I waited…and waited… and waited. Around 5pm I was the last remaining patient when I was called to the back. She had seen all those patients in an hour – roughly ten minutes per patient for their pre-surgical consults.

Her consult with me was no different. A very brief overview of the mastectomy focusing mostly on the steps for testing the lymph nodes. The she dropped the bomb that I might have to wait 6-8 weeks until sometime in September for surgery.

Here I am still wrapping my mind around the fact that I have cancer and all that entails, and she is very nonchalantly telling me that because I want reconstruction to plan on at least that long. I asked about doing delayed reconstruction instead, and she said that I wouldn’t be happy with the end results and that I should wait. When I expressed my concern over waiting, this was her response.

“I do this every day. I know its a big deal to you, but I can tell you that cancer isn’t that fast growing. It really won’t make much difference if you have to wait a few weeks or even a couple of months until we can get you scheduled. It just isn’t that big a deal.”

By 5:15pm the surgeon had conveyed all the information she felt was necessary and sent me on my way.

Even giving her the benefit of the doubt for my being the last patient of a possibly long day, her lackadaisical attitude was not one I felt comfortable with. Yes, it is in fact a big deal to me. I have something growing in my chest that has the potential to kill me. Granted it won’t put me in a grave tomorrow, but at some point it could. C-A-N-C-E-R is not something I want to screw around with.

So I did what the fantasy football boys do – I trusted my gut and started looking for someone else to fill that spot in the line up.

Days 7,8,9: Will I Be Able To Wipe My Own Butt After DIEP Flap Surgery? #breastcancer #breastcancerawareness

Posted on by caspeakman
#breastcancer Days 7,8 and 9: It's the Little Things - Will I Be Able To Wipe My Own Butt After DIEP Flap Surgery?

It’s odd how different things are important to each person.

As I spoke with survivors about their experiences with the different types of surgery, reconstruction and chemotherapy, there was one big question that loomed in my mind regarding the first couple of weeks at home after surgery –

Would I be able to wipe my own butt?

I know, it seems like a silly thing to think about. It might even be a little bit of displacement behavior on my part, diverting attention from the big issues to something that on the surface is trivial. Let me put it in context for you:

In 2011 I had neck and spine surgery spending most of the year in one or more braces. If the body braces weren’t bad enough, I had one additional small complication – the pressure on my spinal cord prior to surgery was so severe that it resulted in permanent nerve damage. I had partial paralysis of both arms for the first few weeks after surgery.

It was then that I realized there are some basic day to day necessities that no one talks about when you’re getting ready for surgery and signing the huge stack of forms and disclosures. How you will be getting in and out of bed, feeding the dogs, and showering to trying to read your smart phone with progressive lenses when you can’t move your neck. Think that last one should be easy? Try it, the effort drove me crazy (okay, crazier).

But the butt was the single most important thing that I failed to prepare for. There is nothing quite like the first time you are in the bathroom and it hits you that you have to pull the help cord to have one of the nurses come wipe you.  Truly horrifying. I decided then and there that my personal milestone for being able leave the physical rehabilitation facility and go live alone at home was WIPING MY BUTT!

I have learned from my mistakes! That is STILL my main criteria for being home during any recovery phase and I’d be lying if I said it didn’t play into my decision on the type of reconstruction I wanted.

Option 1: Mastectomy / no reconstruction or delayed reconstruction – one night in the hospital, go home taped up in a surgical bra with a drain, big scar, can always be covered with beautiful tattoos

Option 2: Mastectomy / Immediate Reconstruction (DIEP Flap) – 8-10 hour surgery, four or five days in the hospital, go home with a surgical bra over taped up chest, hip to hip slice across abdomen plus tape & surgical corset, four drains, can’t be alone 24/7 for the first one to two weeks, can’t drive for several weeks. Its an investment in time and endurance.

Option 3: Mastectomy / Immediate Reconstruction (Implants) – shorter, more simple surgery and easier recovery

I seriously underestimated the amount of assistance that would be needed after surgery and for how long. I have a lot to think about between now and my appointments with the general surgeon and the plastic surgeon next week.

Now don’t worry friends, whatever I decide I’ll have a contingency plan so that none of you will be faced with a full moon after I get home.

Just curious – if you don’t or didn’t have a spouse to help you in a situation like this, WHO in your circle WOULD YOU ASK to WIPE YOUR BUTT?

Day 6: Meet and Greet: My Chemo Doc Has The Same Name As A Disney Villain

Posted on by caspeakman

Day 6: It Gets Real

Today I met with the Oncologist/Hematologist who will be in charge of my chemotherapy. As I write that sentence it seems surreal that it is about me. At least until I look at my Doctor’s name and I realize that once again the universe is showing that it’s warped sense of humor is even more twisted than mine.

Dr. Jaffar

I swear it’s true. Except for the extra “f” my chemo doc has almost the same name as the villain in Aladdin.

Fortunately that’s where the similarity ends.

The very first thing he did was pull out my reports and go over them with me line by line explaining in detail what the different terms meant in this context, the purpose and results of each test, and how all of those things related to my care plan options.

Breaking it down further:

Infiltrating Mammary Ductal Carcinoma – means that the nasty critter that has decided to camp out in my boob didn’t like his original camp site, so he’s poking around hunting for places to take up permanent residence, maybe even build a vacation home. Unfortunately for me, he’s doing this in my body rather than heading for Tybee Island or the Hamptons. I won’t know until after my surgery if he’s actually poured a foundation anywhere else or if he’s just still shopping around for the perfect view. By the way, I’ve named my tumor Floyd. The name fits how I mentally picture him. We name hurricanes so why not our tumors? Both things have the potential to wreak havoc and take lives.

Size – Floyd was about 20mm at the time of the biopsy so he’s right on the edge between T1 and T2 tumor classifications. The only catch is that he pitched his tent next to my chest wall. If some of that connective tissue is involved then it will push me into T4 territory. So here’s hoping Floyd isn’t into climbing walls!

Hormone Receptors – Estrogen – Positive; Progesterone – Negative; HER2 – Negative – Floyd likes the taste of estrogen but isn’t a fan of the other hormones. What this means is that the presence of estrogen boosts Floyd’s growth, so by utilizing certain hormone therapies we can cut off his estrogen gravy train and try to starve him out, reducing his growth potential. These findings narrow down which drugs will be most effective in fighting any mini-Floyds that try to hang on after the surgery.

After talking through the options and the recurrence probabilities of each the final decision was reached.

Double mastectomy with implant reconstruction when possible

TAC chemotherapy – (Taxotere, Adriamycin, Cytoxan all infused at the same time) I am guaranteed to lose all of my hair and probably be nauseous for the entire 18 weeks.

Happy happy joy joy

Getting diagnosed with breast cancer sucks, but not getting diagnosed and dying would suck infinitely worse.

Day 5: Facing It Head On: Save or Shave? (including 10 Reasons to Cut Your Hair Before Treatment)

Posted on by caspeakman
Save or Shave?

Day 5: The HAIR (Honestly, the hot guy pic above has nothing to do with the topic, but I thought we deserved one at this point.)

I’ve been obsessing the past couple of days over what I was going to do about my hair. It was coming off, that was a given, but when and how did I want to do it?

My hair prior to diagnosis was dark red and flowed to my waist. Okay, so it wasn’t my natural color, but the last time I saw my natural hair color was sometime around 1981 and was indistinguishable from a 20 year old dusty deer head.

Being a born and raised Texas girl of course I spent most of my life with big blonde hair and even, yes I admit it, perms like you saw in American Hustle. No not like the styles worn by Amy Adams or Jennifer Lawrence – I looked like Bradley Cooper. My curls made show poodles jealous.

My (now ex-)husband’s transfer to Washington D.C. and a trip to a high-end salon ended the reign of Big Hair. I had no real option except to cut off all the damaged hair and start over. Demi Moore had recently cut her hair for Ghost, I’d try the same cut. I continued to insert heavy highlights throughout and stayed blonde.

Short hair held the reins until 1994. We were back in Texas and my East Coast blonde spiky almost-crew-cut didn’t exactly fit the small town we lived in. So in a vain attempt to fit the mold, I let my hair grow.

Fast forward to 2001 and the universe pranked me with a fortieth birthday present of infectious colitis. I spent from Halloween to Thanksgiving in the hospital with an IV strapped to my arm just to get stable enough for release. For the next few years the number of pills I took per day required their own backpack if I wanted to tote them anywhere.

I had my first portacath. I had infusions at the center, at home, and even a couple of times in my office. For a few weeks I even had the joy of a pump in a fanny pack with the tube hanging from my chest. If you’re ever in this situation, buy a couple of boxes of those wine glass marker rings. They make a great way to add sparkle to the tubing. I also discovered that it is possible to unload hay bales from a truck with a tube connected. Not advisable, but possible.

Most of my hair fell out. If I sat on a chair with a fabric back, it had to be vacuumed when I stood up. I clung to every last strand, making them symbols of determination, not to mention that they were also a great big flag of denial that the Great Shed of 2001 was happening.

Around 2005 when I was finally clear of the colitis, I saved my pennies until I could afford to go to a destination spa for a day and have a skilled hairdresser figure out what to do with the remaining medicine saturated hair. Once again, I cut it all off and this time we dyed the short hair red.

It looked fabulous! I’d let it grow a little from time to time, but it never got very long before I’d hack it off again.

2011 – neck fusion surgery – I don’t know why it didn’t register beforehand that they would be partially shaving the back of my head. After surgery I was back to square one – what to do?

I’d never had it long since I went red so why not grow it out and see how it looks? It’s now four years later and red hair ripples to my waist. It’s thick, soft and straight.

The point of all the above is that drastic changes to my hair style and length have always marked major events in my life. I knew from when I had the infectious colitis that going through the shedding was more demoralizing than just dealing with the issue head on, so to speak. 

Leaving it long wasn’t an option. In addition to shedding, there were the practical issues of maintenance when my motion would be restricted after surgery and trying to keep it up and out of the way during exams, follow ups, therapy, etc. Add that to the 100+ degree heat of a Texas summer and chopping was even more appealing.

What about shaving my head? I did consider it, but I had read enough to know that not everyone completely loses their hair, in some cases it simply thins to varying degrees. If I wasn’t going to lose it entirely, then I decided I wanted to keep a little bit intact for a backup plan.

I started a Pinterest board and collected photos of styles that could easily make the transition for me. Short enough that if/when it fell out it wouldn’t be as majorly traumatic and long enough that my scalp was covered. The answer was a variation of a pixie cut.

The stylist who originally turned my hair red back in 2005 still does my hair. On the fifth day, Monday, we cut my hair. You can see my before and after photos on either my Pinterest board or on Facebook.

There is an 18″ pony tail curled up on the corner of my desk as I type this. When you consider that I’m only 5’1″ that’s a pretty significant portion of my height. I haven’t decided yet whether I want to use it in making a wig for myself, or if I will donate it. I’m waiting to see how much hair I lose and how/if it comes back.

Oh and by the way, deep underneath all the dyed overgrowth I discovered that my natural color is now a rich dark brown except for the crown which is a blend of white and muddy brown. I’m curious to see what will happen during and after the chemo.

10 Reasons To Cut Your Hair Before Chemo:

1. I will save a ton of money on hair products and on utilities. I can actually raise the temperature of the AC because I am so much cooler without it. I also don’t need to use the hairdryer, straightener, curling iron, or other energy sucking devices when getting ready. I also use less water since I don’t need much time to wash it.

2. No more worries about frizzy hair when it rains or is humid.

3. Don’t have to book a salon appointment weeks ahead, spend hours in a chair for cut and color, and give up most of a treasured Saturday off to deal with my hair. More $ saved.

4. Getting ready for work takes 15 minutes less.

5. No more worries about trying to smuggle aerosol products (hairspray) onto a plane since Big Texas Hair requires 1 can of spray adhesive per day to maintain shape and style.

6. It will no longer fall in my face making me look like Cousin It from Addams Family.

7. The dogs aren’t stepping on my hair when I’m sitting on the club chair in the living room or lying on the sofa. (Cricket prefers to live life above floor level and leaps from the arm of one piece of furniture to another to get around when she can. She’s also been know to climb bookshelves and kitchen counters.)

8. I won’t wake up in the middle of the night being strangled by my hair after I’ve rolled over.

9. My hair still looks kick ass at 8 am, 5pm, or 3 am. No more bedhead!

10. I took control away from cancer on one thing today. This is MY life – that little bastard in my boob better start running.

  

Days 2, 3, 4: Coming Out About Cancer: The Power of Love & Six Degrees of Separation

Posted on by caspeakman
Attitude Is Everything

Since I didn’t start this blog until Day 9, I’m doing some backtracking to get caught up to date.

Fourth of July weekend, 2015 gave me three loooong days to wrap my head around the words I have CANCER. Though I’d had weeks of clues telling my gut that I had it, my brain handled the news like a couple of men arguing over a split decision after a heavyweight title fight.

Logic: You have breast cancer. Do the research, make a plan.

Denial: Not all of the histology reports are back yet. Maybe they’ll say something different. You know, maybe they’ll decide it’s just another phyllodes tumor they can cut out and that will be the end of it. The last two times the malignancy was enclosed in benign tissue so they got the whole thing in one swoop. No chemo or radiation, a day in outpatient surgery and then move right along back to normal.

Logic: Hey dumbass, did you read the top block on the test results that came back? See right there, Infiltrating Mammary (Ductal) Carcinoma. What part of C-A-N-C-E-R is unclear?

Denial: It has to be a mistake. Maybe it was just a few cells and they can use the Vacuum Assisted Breast Biopsy System aka Booby Nail Gun to remove the rest? Less than an hour under local anesthetic and all done.

Logic: Seriously? Just pick up the report and set it next to the computer screen. Every time you even think about opening your mouth with that nonsense look at it and re-read the results. Now shut up and go sit in the corner. I’m putting you in time out while I get some work done.

I am an information geek. I admit it. When doing research for stories I will chase wild hares and links down some crazy rabbit holes just out of curiousity. If we play trivial pursuit, you want me on your team- unless it’s sports related, I suck at sports. So given the above, of course I spent the weekend attached to the internet gathering data and notifying my larger circle of friends. I am single – divorced over twenty years – no kids except two rambunctious shelties. No brothers or sisters. As far as other relatives, well let’s just say that with a handful of exceptions, if I wanted to have a family reunion I’d only have to go a few miles to Fort Sam Houston National Cemetery. My friends are my primary support group through this journey.

One of the first things I did was ask V/K to put me in contact with RA, a breast cancer survivor who in spite of the disease pummeling her with every possible negative outcome, is still standing tall and fighting hard. RA is a strong advocate regarding the role nutrition plays in fighting cancer and we had several conversations in those first few days about not only nutrition but tips on how to handle the day to day challenges.

One of those challenges would be a decreasing ability to multitask as physical and mental resources are reassigned to battle duty against the tumor. While talking to RA by phone and online, I began posting notice of the diagnosis online, starting with the FFWG, an online international community of romance writers that I belong to.

I am so grateful to have those women as part of my life. The outpouring of support was incredible. My fabulous Critique Partner BMc surprised me by organizing the group to send me Amazon gift cards so that I could download books to read while undergoing the surgeries and chemotherapy. Within hours of the online post the emails started coming in with loving messages of support. It was the perfect – and practical – way to give me a boost during the initial days of coping.

I followed with posts and banner changes on Facebook and Twitter. I didn’t want sympathy or condolences, so I thought hard about how I wanted to present this challenge in a way that would inspire. This is what I finally, after multiple rewrites, posted:  On July 2, 2013 I took the first step in beating breast cancer by getting diagnosed. I also challenged all the women I knew to get their mammograms done if they had been putting them off. Over a dozen responded by making appointments. 🙂

Then I told the SARAs, the local romance writers’ group I joined in January of this year. I have been completely overwhelmed by the support offered by the members, many of whom I haven’t met yet. Writing is the thread that pulls us together and lifts us up. Minutes after my post I received IMs asking what I needed and what they could do to help. It’s been a hard year for our group. One of the long time members, LS, is also battling cancer and has recently started her chemotherapy.

SARA member T put me in contact with DW who is a breast cancer survivor and active in the cancer survivor community here. For the remainder of the weekend I had RA on one message thread and DW on another gaining valuable information on real life, day to day living with cancer. I looked at the photos of RA’s journey that she has on her FB page.

And here is where the Six Degrees of Separation kicks in:

RA and DW were referred to me by completely different friends who have never met.

RA and DW were both diagnosed with cancer in July 2013. They are both within days of being two years prior to mine.

RA and DW had the same oncologist.

RA and DW did their chemotherapy side by side and are close friends. In RA’s FB photos, DW is the dark haired woman in the next chair.

I am incredibly grateful to everyone who is supporting me in this fight. By focusing on the positive and finding the humor you give me the strength I need to make it through.

That’s the Power of Love baby