Wow! How did I get here? A year ago I had an MRI for a separate spine condition that showed that my spinal stenosis had progressed and was pressing on a root nerve which was causing leg weakness/unsteadiness. Spine surgery and fusion were recommended. I was pretty focused on that info when the spine doctor commented that the MRI also incidentally showed a mass under my right kidney. What did you just say? This was followed by an appointment with my agitated oncologist at the time, a CAT scan, a liver biopsy and a kidney biopsy and voila! It was confirmed that I had advance stage IV metastatic breast cancer. It is surreal to me that it is almost an official year since that diagnosis, not really great news when you have a 28 to 36 month life expectancy. I have now lived through all four seasons–winter, spring, summer, fall and now winter again with this horrible beast. So far nothing has worked and my cancer has morphed from ER+ to TNBC and continues to be awake and on the move. As most of you know I have had to move on to the Big Bad chemo and an experimental drug in a clinical trial as I try to wrestle the monster and knock him back. I can’t tell you how much is riding on my March Scan, both physically and mentally. As I told Tim/Blanket–if this isn’t working I may need to be scraped off the ceiling and put back together piece by piece. It is a heavy mantle to bear. Ask Lucy.
So most of you have noticed that physical changes are afoot. I have lost all of my hair and some weight. Please know that this is not the cancer killing me, it is the toxic poison I am infused with that is trying to kill the cancer. It doesn’t represent well, really anything. I have more side effects and am notably weaker. I can’t do some things independently that I could before, like drive an hour and have lunch and drive back. The fatigue is too great and my drop in red blood cells makes me short-winded, again a side effect of treatment. So we plan out days around what I can physically do and I spend a lot of time on the couch, knitting. I have zero appetite so even the most tantalizing foods turn me off. I have also developed superhuman powers of smell—-perfume, cleaning fluid, cigarettes, food–my stomach flips over and I open a lot of windows which is not much appreciated by my family and co-workers. Yesterday we went to see Star Wars and I could smell cigarettes on the guys next to me –YUCK!!!!!!!!!! Family and friends come to me more and I go out less, but it is all okay if this is working. My cycle is to have back to back chemo infusions within 7 days, and then 2 weeks off. The 2nd infusion is the one that puts me over the top, cumulatively, and when I am the sickest for 3-4 days. The 2 week break helps me to bounce back to a more normal zone.
Tim and the coconuts are unsettled by my baldness–not that they haven’t been through it before but it seemed very temporary then but not so much now. I think it just pains them to be reminded (as if we could forget), so they have pushed for a wig. I had no interest but was willing to oblige them if it makes them happy–I can only wear it in short spurts because my scalp is sensitive and it is uncomfortable. Hats are way more nice!!
Next week I am having a catheter port implanted in my chest wall –kind of like my own purple heart with the catheter threaded into a vein in my neck. Doesn’t everyone spend their school vacation doing this fun stuff? The port will make everything accessible for chemo, blood work, scans etc. and I will not have to be poked in my right hand every time to place an IV–which I gotta say was becoming brutally painful for me. People are surprised I don’t already have one but it is another ones of those things I have resisted because it pulls me further down the cancer road I would rather not be traveling. But sometimes I have to blink and just do it. Kelsey has been my chemo pal for a while now and as a nurse, she was pushing for it every time and getting the chemo nurses to gang up on me about getting it. Ok, UNCLE!
Speaking of chemo, the days are long which is why having Kelsey for companionship is good. We knit and talk, have lunch in the café, hang out. Once we even got a bed instead of a reclining chair and got in it together. Last week we were sitting in the waiting room which is usually a very peaceful, quiet place. Patients are usually reading, knitting, eating, zoning out. A woman seated near us became very agitated and was reaming out a lady in a white lab coat. It did not stop. Now, I appreciate everyone’s pain–we are all battling something. But I could not understand why the lab coat lady did not take her someplace private to talk. I realized my heart rate was going up and my palms were starting to sweat–a sure sign of a hot flash ensuing. I mouthed to Kelsey “this is stressing me out” and she jumped up, grabbed my bag and marched off to the far side of the waiting room. Note to self–avoid situations that cause you stress, don’t stick around, it does not help.
How are the coconuts? Head coconut dropped her phone and smashed the glass, little coconut got her car towed at the gym in Southie. Pretty routine week for us. Jack and Sid visited last weekend, my brother has hernia surgery this week, Tim Blanket has managed not to get the dreaded head cold. Annie and Leila made dinner for us, flowers and baskets arrived. The coconuts sent cupcakes in a jar! I am home today on my second snow day, winter arrived late but it has arrived and I hate it. When I can’t sleep I picture myself snorkeling someplace warm where I am floating and breathing rhythmically, in and out. It helps. Try It!
And now a life lesson: I am writing this blog for the coconuts so I have to occasionally throw one in. Most, if not all problems can be solved by three little words. I AM SORRY. Always lead with that. (Tangential lesson: don’t ask for permission, beg for forgiveness) In the past, when people would say or do something I didn’t like I would never say anything, just stuff it–not particularly a wise strategy coming from a psychologist but I grew up in a house with a lot of yelling and fighting and I avoid conflict like the plague. But since my diagnosis, knowing how little time we all really have, I have been less willing to let things slide. Two close girlfriends did something that really hurt me and I told them they had hurt me. Neither one apologized or said “I am sorry.” One even said she was waiting for me to get over it. Okay–this is not a sign of caring or empathy or anything. Maybe my cancer was not convenient–I have no idea but they took flight and left. C’est la vie.
Again, Kelsey and Bridget–if you hurt someone accidentally or intentionally, always apologize first. Say “I am sorry, how can I fix this?” if you are invested in continuing a relationship. This will help at work, in love, with family and friends.
My song this week is one of Michael M’s favorites and yes, I have seen Rent 3 times!! After the last 4 seasons I have lived through, the amount of love I have received from so many people, and the lessons I have learned, how could it be anything else?
Love from Barbara, Nurse Kelsey, Bridget and Tim Blanket