Sunday, February 26, 2017

When it starts...

It started this morning. As I knew it would. It's no surprise. For christsake, they tell you you have cancer and then put a flyer for wigs in your hand -all in a matter of nano seconds. So it's not a surprise. Still. When it starts....

My hair. It has started to come out. In the shower this morning I noticed. Not a lot but a enough to get my attention. My scalp is a bit sore (kinda like when your hair hurts from wearing a cap, if you know what I mean). Or maybe you don't. No bother.

I've never been a vain person. Sure you always want to put your best foot forward as they say, but I've certainly not spent a great deal of time (or stress) over it. Comfort can be fashionable is my motto. But I do like my hair. I always get compliments over the color (I've never altered the color of my hair unless you count the endless bottles of "Sun In" during high school) and or the curl – all natural. I like to think I get my hair from my mom. And I thanked her every time someone took notice.

My mom. She was unique. From her god-given name, Nela. To her nickname given by our cousins, Aunt Law. She was my protector, my coach, and my partner. We grew up together, as she was just shy of 18 years my senior. We played endless softball together. First as coach / player. And then as teammates on numerous women's softball teams. She played a mean second base. We bowled together - earning a spot at the Iowa State Mother-Daughter tournament one year.

Mom called me by several nick names as a child but one stuck into adulthood: Mouse. Not sure why and no one else in my life has ever called me Mouse. It was a term of endearment just between us. We shared a fiery Irish temper. And as I got older and wiser and no longer lived under her roof, I pushed the boundaries of my tolerance of her imperfections. We clashed over numerous silly things like how to plug in her DVD (I believe that tiff had us not talking to each other for months) to more serious issues such as how she behaved around my ailing and failing grandmother, with whom she lived. Regardless of her flaws, I loved my mom. I learned to be a good human being from my mom. She's the reason I am who I am. 

She successfully protected, guided, and nursed me through my childhood and adolescence by putting the needs of my brother and me above her own. When I passed out after she pulled a thorn from my finger, she was the first face I saw, holding my hand and telling me I would be OK. She literally sat on top of me to keep me from driving to Iowa City after major oral surgery the day my high school best friend wrecked her car and we were afraid she wouldn't pull through. It would be nice to have her here now. 

My mom lived 66 years. Pride, ignorance, and fear kept her from knowing and conveying to us the extent of her health issues. Isolation and stubbornness allowed her to die alone surrounded by friends she never saw in a small town community she refused to let in.

As my hair falls out, I'm reminded of her. What she gave me. What she took from me. What she left me with.

However unlike my mom who passively let fate be her guide, I'm taking this bitch by the ears and shaving my head. Liz is calling Ann tomorrow. Fuck cancer.

Wednesday, February 22, 2017

Keeping Me a Well-Oiled Machine: It Takes a Village

So I had what was to be a routine follow-up on my mediport install yesterday. You know, tens day out of an event by where your surgeon inserts a tube directly into your jugular vein, she wants to take a looky-see and make sure everything is ok. I consider this a part of “body maintenance” at this point. I understand that at least for the next 20 weeks or so I will be poked, prodded, jabbed, x-rayed, scanned, and fed medication to keep me alive while eradicating - in the most god-awful way - what could potentially kill me. Sounds like that’s a thin line to walk, but as I mentioned before I trust my doctors implicitly in their efforts to rid me of this disease. And so I go to my follow-up.

As in turns out, the mediport is doing well. It’s still sore – my neck mostly, which was a concern of mine – but the doc said soreness was “normal” since “after all, (as fore mentioned) it’s a tube directly into your jugular”. Well, OK.

I have had a persistent cough for a couple of weeks. I caught something from the family during our most recent visit and it has lingered a bit too long. I mentioned this to my very confident, gregarious, southern, ex-Army surgeon and she immediately ordered a chest x-ray to rule out pneumonia, blood clot (god forbid), or whatever. And she meant IMMEDIATELY. She sent me upstairs to the nearest radiology center – unfortunately they were closed for the day.  And then sent me, via my Ford Escape, to Sibley Hospital. Now, normally, one would freak out about having to drive themselves to the emergency room given the potential severity of their condition. But as luck would have it, I’ve had previous experience driving myself to the ER under a rather urgent and life threatening situation. As you recall, if you’ve been following along with my life, my wife wished to trek to the Base Camp of Mt Everest for her 50th birthday a few years back. And as my luck would have it one result of that wonderful and life-changing “vacation” was the development of a pulmonary embolism that frankly should have done me in on the 23-hour flight back to the US. A persist cough got me in the see our general practitioner the day after arriving home and my symptoms of leg pain and swelling, coupled with difficult breathing, sent me in my Mini to Arlington Hospital where I preceded to spend the next 5 days in the hospital to regulate what would turn out to be a 6-month ordeal of being on blood thinners, two subsequent surgeries, which all led to having two blood transfusions and weekly blood count draws. So, needless to say, experience pays off!

Turns out, my lungs are clear. Nothing but a persistent cough and a sore neck. Mission Accomplished.

I’ve heard from numerous friends and family in the medical (and just caring) field since my post regarding nausea. So thankful for folks in my life. I just want you all to know I heard you. From now on, nausea medication will be my friend, not the nasty nausea. I promise to take – and take as often as needed - the meds my doctors have given me to reduce the side effects of chemotherapy. And, if for some reason, they stop working I promise to let my team know so they can find another solution.

I need to consistently remind myself that even though I am the one with cancer, I am NOT alone in this battle. 

And as for proof, I’ve received a constant stream of well-wishes and care packages since my diagnosis. Each one has created a steady flow of tears and heart-felt gratitude for being thought of and cared for. I know I keep saying it, but it’s true: I am a lucky gal.

Friday, February 17, 2017

My New Friend

“Nausea”. According to Wikipedia: Nausea is a sensation of unease and discomfort in the upper stomach with an involuntary urge to vomit. It may precede vomiting, but a person can have nausea without vomiting. When prolonged, it is a debilitating symptom. Oh my gosh.

It’s worse for me in the early evenings, before heading home from work and then again at night. I’ve been trying to “gut” it out by not taking the nausea medications, but I think I’m quickly loosing that battle. I’m told the chemotherapy is an “accumulative affect”, meaning the treatments build upon each other and its gets worse before it gets better. If I can’t handle week one, where will I be week 15? I have been eating smaller meals more frequently thru out the day to keep it at bay. Still. It’s there, like a constant reminder something’s just not right. And it’s not.

I’ve become a tea drinker, hoping to quell the uneasiness in my belly. I don’t like tea. I’ve cut back on the amount of coffee I’m drinking because I think the coffee has an adverse effect on my nausea. I like coffee. I’m trying to drink a gallon of water every day. You know how much water that is? Honestly, I haven’t gotten close to that goal, but it’s still my goal. Flushing out your system. Sounds like that would be a good thing, given the amount of poison dripping in via my mediport every other week.

Nothing is right about this. While I feel perfectly fine, the nausea is a reminder to me that I am not perfectly fine. In fact, I have cancer. I’m thankful my body has begun to attack the overly-aggressive cancer cells (and unfortunately everything else in the way). I suppose, the sense of nausea is a comforting one in a strange way that something “good” may come from all of this.

It’s just my first week – I try not to panic – how the hell am I going to deal feeling like this for another 19 weeks? Somehow I know this is more than just a test physically, but mentally and perhaps spiritually as well. What’s that old saying: “What doesn’t kill you makes you stronger?” Ready or not, I’ve accepted I’m the passenger on this journey.    

Tuesday, February 14, 2017

Meet My Squad (part 1)

Liz and I have been over-whelmed by the love and kindness shown by our family and friends since my diagnosis. From time to time, I'll be introducing you to "JJB's Squad". I would not want to be citizen in any other village. My heart is full on this Valentine's Day.


Monday, February 13, 2017

Let's Get This Party Started: Some A/C for my D/C

I didn't sleep so well last night. Actually since I've known I have cancer in my left boob (and said left boob is still on my body) I haven't slept so well. My mind just races - not to some dark, horrible corner of bad stuff so much, but races with the names of the drugs, the order of the drugs will go into me, the length of each cycle, did Liz remember the chap stick in our newly purchased "chemo bag" (more on its contents some other time).

The day I've been waiting for since the diagnosis almost a month ago. The day we begin to kick this uninvited fucker's ass - is here.

Ok, now for some medical jimble jamble that I will NOT test you on later. I get it, the medicines are scary on their face, but once you see their names, your veins will start to shrivel. For the first eight weeks, I will have two chemotherapeutic drugs pumped into me -via the nifty mediport installed in my upper chest. Again, for those in the back of the room, that mediport - which will be used for all the blood draws thru out this process as well- will save my veins. Before the chemo drugs come on board, however, I am chocked full of anti-nausea medications to try and get ahead of the nasty side effects of having poison driven directly into your blood stream. Sweet!  As Liz will attest - since I've stopped drinking Boone’s Farm Strawberry Wine (and gave up trying to one-up a young rival with whisky shots) I am not one to pray to the porcelain goddess. I see no need to break that streak now.

The two chemotherapeutic drugs I'm getting every other week for eight weeks are: Doxorubicin (generic for Adriamycin) and Cytoxan. The Doxorubicin is bright red (!) could they not have used some soft pastel blue food coloring in the lab??? I get two large syringes of the stuff that the nurse slowly pushes into my mediport. My A/C (if you are still following along). Oh, D/C (damn cancer). Ok. All caught up!

Both of these drugs basically work by attacking cells that quickly divide. Now, I'm not a doctor nor do I play one anywhere so I'm not being any more technical than that for the sake of the blog. If anyone wants or needs more information, we seem to be quickly building a medical library in our home. Come on over for coffee or tea and bone up.  I will say, these are fascinating drugs and if it weren't for cutting edge research we wouldn't have them (more on the importance of R/D funding later). From what I gather, cancer cells are notorious for their super-fast division. In fact it is that cells are dividing at warp speed that makes them cancer. These drugs target those kinds of cells and kill them dead. Yea! Perfect!

Well, the drugs, albeit "smart" in their targeting cannot seem to decipher between fast dividing cancer cells (bad) and fast dividing normal cells (hair, skin, gut). And so those good cells are also being destroyed by these drugs. I suspect my hair will be gone in just a few weeks (they say it will come back – fingers crossed). I'm getting white cell boosters thru this tiny box that attaches to my arm. It shoots me (after making you tense with some needless beeping countdown) and then dispenses the white cell booster tomorrow (eliminating the need for a return trip to the doctor office). Lotions for my skin and anti-nausea meds for my gut should keep me up right and strong. That's the plan, at least.

After a few hours, Liz drove us home. I've been snoozing off and on with some mindless daytime tv playing. Guzzling water and chilling out. Bolstered by the tremendous support of my "Squad". You have made me laugh, allowed me to remember my childhood, and given me permission to cry.  This is a 20-week battle for my life. Please don't stop. Xoxo

Sunday, February 12, 2017

My Lent

Tonight, I had my last margarita until August. And that sounds so sad. I won't lie, I, personally, fully and thoroughly enjoy tequila- and anything with tequila in it, i.e. the magnificent Margarita. And while I'm at it, the best Margarita in all of metro D.C. Area is right in my neighborhood - the Taqueria Poblano ( None better. Take my word for it. Ok. Back to me.

Folks who know me, know I enjoy a few things in life: funky expensive shoes, nice bed sheets, more than a few t-shirts, and good tequila. Look, everyone has their vices. These are mine. Our linen closet is stuffed with multiple bed sheets, all of which coordinate with each other, making endless combinations thru out the season: flannel for fall/ winter and percale for spring/summer. I have a shoe rack that runs the height of my closet filled with high-priced "comfortable but stylish" loafers and oxfords. I've got so many t shirts, Liz made me a surprise quilt from some of them without permission one Christmas (!). And I have over twenty bottles of tequila and mezcal in the house.

According to Wikipedia (and who doesn't believe everything they read on the internet): "The purpose of Lent is the preparation of the believer through prayer, doing penance, repentance of sins, alms giving, atonement, and self-denial". And so this is my Lent of 2017. But instead of 40 days and 40 nights, we're talking a full 20 weeks! Gawd. Here's to August! Salud! 

Saturday, February 11, 2017

Becoming Comfortable With The Tears

Bettie and I have enjoyed daily morning walks since we lost Asbury in September. At first it was a way to get her more exercise in lieu of having a sister to chase around the back yard, but it quickly became just as beneficial to me. I miss my girl Asbury. We never went on walks, she and I. She wasn't the walking-kind of dog. Always barking at anything and everything. She was perfectly happy and down right joyous in her backyard (more on that later). So Bettie and I have a thing now. We walk every morning. We both need it. We enjoy it together. 

I'm not a woodsy gal. Camping was never my thing. And other than trekking to Everest Base Camp I'm not a hiker either. But I do enjoy the outdoors. I love to watch birds - probably learned behavior from my grandmother who set up numerous bird feeders (quickly taken over by aggressive squirrels) around her yard. She always point out the occasional Blue Bird, big bellied Robin, or her favorite the Cardinal. She'd say a Cardinal represents someone who you have lost, and serves as a reminder that they are always with you and watching over you. She believed stuff like that. And I loved that about her. 

My grandmother was the love of of my life. She and I spent countless hours talking, playing games, cooking, and occasionally sharing a snip of Irish whiskey. She shared with me the history of our family on my mother's side and was the keeper of all heirlooms and keepsakes. When I was in college, she had given me a Saint Christopher medal  she said was specially blessed and carried down through her family. I have carried that medal in my left pocket ever since. For decades I've carried that medal. I give it a rub in particular tough time times and it smooths me. Somehow I believe she's with me whenever I touch it. She passed away in 2006 after falling and breaking her hip. She was 93. Liz and I were in Chicago for the Gay Games when we got the call from mom. I flew home immediately. She had surgery to repair her hip, but she never made it out of the hospital. Her hearing and most of her sight had gone by then and she was in a lot of pain. I remember our last moments together like it was yesterday. She would never say "goodbye". She didn't like those words so it was always "see you soon" or "take care love" whenever we parted ways. Before leaving her side for the last time,
looked into her beautiful blues eyes that were teary and fearful. I took her arm and leaned close to her ear and said "it's ok to go. It's ok". I don't know if she heard me. A freight train could have come thru her room and she wouldn't have heard it. But I believe she heard me. I like to think I gave her permission to let go. To stop fighting. To not be afraid. She passed a few days after I returned home. I miss her every single day. 

Bettie and I came across two cardinals on our walk today. Two beautiful red birds who seemed to be playfully flitting from tree branch to tree branch. Chasing each other. A pair. They came right at Bettie and I and just before I felt I should duck to avoid being smacked, they quickly turned to the right to settle on a branch nearby. I was instantly brought to my knees. Without thinking about what cardinals signify, without a thought of my grandma, I was immediately brought to my knees. Tears streaming down my face and Bettie looking confused and frustrated that we had broken our swift pace. I then felt a presence. A calmness. And a strength. You know this really sucks. Not just kinda sucks. Like a bad hair day, or a headache or some crappy weather pattern, but REALLY sucks. But I'm getting comfortable with the tears. 

Wednesday, February 8, 2017

Armed for Battle

I received my mediport today. Via an out patient procedure, a small medical device was placed under the skin and connected to the big vein in your neck. The needles are poked into the device, saving my veins from having to be continuously jammed at. This is good. This thing  - looks like a lump on my upper chest - will serve as my catheter for chemotherapy, which starts Monday. Everything went well. My neck is a bit sore but otherwise, we are good to go.

Liz, as expected, was a trooper. All in all we were at the hospital for 6 hours. She will read a lot of books thru all this!!!

I also had my haircut super short tonight. I did not want to watch my long, curly red hair fall out. I needed to take control and have it cut short. And I needed to do it now. I felt wonderful. Many thanks to our friend Anne, who ownes a super cool salon in downtown Del Ray. And without hesitation agreed. Having gone thru two brain surgeries herself, I would not want anyone else to care for me Right now. She will also be on call for the time when my hair starts to fall out. 

I'm ready. I feel good. I've heard from folks far and wide today at the request of my wife. They responded in bucket-loads. I have my village. I have my armor. Let's get this party started.

Saturday, February 4, 2017

Telling my Everything

The day I tell my brother. The one conversation I fretted about having was the one where I'd have to tell my little brother his big sister has cancer. If the tables were reversed I'd be devastated. It's just Jeff and I against the world when push comes to shove. The world without him would be meaningless. He's my everything.

After the girl went to school Liz and I sat them down. I said I had news I needed to share and I looked at Jeff and said "I have breast cancer ". I have found it easier – in my short time with the Cancer to deliver the news if I just blurt it out. Folks on the other end of the conversation may feel otherwise, but whatever….It’s not about THEM right now…..

Both he and Mark were fabulous. Supportive. Encouraging. I told them the plan. Liz filled in the details I can no longer hold in my head. We were all ok. I was grateful to have that piece of this journey over. He knows. He wants to come up and be there for me. I can't ask for anything more. They are going tell the girl on a day and time of their choosing. I support their parenting decision.