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.

 

 

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

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 (www.taqueriapoblano.com). 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! 

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. 

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.

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.

Meeting More of My Team

My wonderful surgeon got me into see her equally wonderful colleague, oncologist the next day. Dr Rizzo - deemed by the Washingtonian Magazine as one of "DC's Very Best Oncology Doctor's of 2017", is a slight blond with thick fashionably round glasses. She speaks knowledgeably about this process called cancer treatment, and without hesitation describes our plan. 20 weeks of chemo first (once every 2 weeks for 8 weeks, followed by once a week for 12 weeks) Triple negative cancer patients respond to chemo. Hopefully well enough to shrink or depose the cancer completely. So chemo first and then surgery.

To be followed by: lumpectomy, mastectomy, with or without reconstruction. A bit overwhelming. I can easily say I've never been a big fan of my boobs. They've never done anything for me except get in the way of sports and attract the opposite sex (which, while perfectly fine humans, are of no interest to me personally if they are attracted to my boobs…make sense?). So I'm absolutely clear I want them both off my body, I'm initially not in favor of reconstruction surgery. I don't need boobs. I don't prescribe (or I don't want to prescribe) to the social “norms” or pressures of what a woman's body ought to look like. I don't need them. They would serve no purpose. But both doctors urged me to give this some thought. And so with everything else we have to decide, I have some time on this decision.

I told Dr Rizzo about my previous adventures with blood clots, hemorrhaging from blood thinners, and subsequent surgery to stop the bleeding. Oh, and also, “the day I thought I was having a heart attack" which turned into a low heart beat followed by numerous tests to figure out why - which were of course all inconclusive. 

In being careful and thorough, though she recommend I see a cardiologist for an echo cardiogram. And, as it turns out, she just happens to have gone to school with one, also according to the Washingtonian – one of 2017 DC's Very Best Cardiology Doctor's. Dr Oskoui, as luck would turn out, could see me on the same day. And some good news. My heart is strong and I'm ready. I liked the cardiologist. I certainly understood why we he respected by his colleagues and by his patients. And by the way he talks of Dr Rizzo, he clearly had a crush on her at some point in their lifetimes. Very cute.