Major Tom/Space Oddity

Why hello, Welcome to Cancer Week! What the heck is happening? I woke up Monday to the news that David Bowie had died of cancer followed shortly by Holley Kitchen, Alan Rickman and Celine Dion’s husband and brother. Now I don’t know these celebrities personally, and some chose to keep their cancer a secret for what ever reason, but I just saw Holley at the DFCI conference on October 17 and she looked vibrant and very much alive. Things change quickly which is what I am learning daily. A lot of women I have met on-line have died in the past month or are having serious set backs with cancer progression. Sadly, a consequence of Holley’s death is that it shines the spotlight back on MBC for a short while, something she wanted and would have appreciated. Her video is here if you want to check it out.

President Obama announced in his last State of the Union address this week that he was appointing Joe Biden to spear head a “moon shot” to cure cancer. Although awesome in intent it is really ambitious– cancer isn’t one disease but hundreds and there will be no one cure although scientists now understand much more about how cancer forms and spreads and are developing new ways to tackle it. I am myself a current beneficiary of a clinical trial for immunotherapy –more on that later.  One big problem is that scientists/researchers function in silos with keys to fantastic data that is not shared. Those silos need to be broken down so cross-disciplinary research can benefit all of us. It is thought that maybe 600,000 cancer deaths could be prevented with shared access to information. The moon shot is going to need a lot of money and research and will be more difficult than actually going to the moon.

Okay enough rumination on the state of cancer affairs in the universe. I can personally attest that cancer sucks! Two weeks ago I crossed over to the other side and kicked the can further down the dead-end road I’m on. The sweet, gentle approach could not get my cancer under control and a new urgency was generated by the discovery that my cancer is now Triple Negative and growing in my liver. One tumor doubled in size, four others grew and two new ones emerged to join the party. Yah, that. I started IV chemo–the dark, scary world of compromised quality of life and endless side effects. I mentioned above that some cancer patients like David Bowie/Major Tom chose to keep their cancer secret. I just cannot do that and be me. I will share a lot of the bad stuff but not all of it–some is too icky and personal but whatever.

My first day of chemo involved a lot of blood work–maybe 15 vials of blood over the course of the day and then into the chair. About 20 minutes in I looked over at Tim sitting quietly in his swivel chair reading with a big window with the Boston skyline behind him. I thought about all we had given up, gone through, lost, to get here and how, 13 years ago, I finished chemo in the chair and swore I would never do it again. The salty tears came then, not so much because I felt sorry for myself, as much as I felt sorry for all of us, everyone who has to sit there and endure a lot of stuff the body was not meant for. Would my moon shot come in time?

The day passed uneventfully considering the toxic nature of the undertaking, and the nausea and vomiting did not start until after the second day. Adjusting to new medications and figuring out a strategy to control the side effects is very trial and error. Side effects roll out whenever and without plan. Sharon took me for blood work the day after chemo and I spent the weekend on the couch. Next, it was Kelsey’s turn at bat. A visit with my doctor– then back in the chemo chair with a bag of fluids for dehydration and IV Zofran added to the mix this time. Amp up the fluids, eat small etc. Again the loss of all appetite and nausea which I kinda controlled by upping my meds but a general feeling of malaise and unwellness set in again after the second day. I admit, I wanted my mother. When I was little and got to stay home sick it was probably the only time I actually got 1:1 attention full on and my mom would make me tomato soup and grilled cheese sandwiches cut up into quarters. She would fuss over me and let the dog sleep on my bed.  I hated going back to school. Wouldn’t you?

But, by Friday Morning I had left work early, too sick to be there, put on my new Victoria Secret jammies and climbed into bed with my cats for a 4 hour nap. I woke up feeling like a I had a head cold–pretty crummy–and I thought if every day is going to feel like this for the rest of my life that is not going to be good. At all. Who wants to be grumpy cat permanently? More sleeping, but Saturday night during the Patriots game I started coughing up blood. A call to my doctor and a decision to wait it out and see if it resolved. It did, after a 10 hour sleep–the conclusion– I actually have a cold. Hello Nyquil, my new best friend. I am telling this story mainly so you can understand the many red herrings and false positives that can crop up and the scariness of not knowing which is which. I am Nancy Drew with a flashlight in the dark. I am relieved it is only a cold. Hurray for me!

 

Now a word about knitting. Yes, I have taken this up vigorously including classes. Weird choice at my age? Not so much. My mother was a world-class knitter and seamstress. My concentration for reading is shot. I spend a lot of time in the hospital in waiting rooms, labs and chemo. I am easily distracted. Knitting is something I can do without a lot of focusing and it takes my mind off the dark places it wants to travel, like will I be here next Christmas? when I watch Tim put the decorations away. It also gives me something to think about in the middle of the night or when I first wake up that isn’t about me or cancer–I can ruminate over yarn and stitches and math problems needing to be sorted out to determine a next step. It’s a good thing. No chemo this week, nursing my cold, mumbling to myself and complaining to Tim is the order of business. I hope Major Tom is happy wherever he is now that his mission on earth is complete.

Love,

Barbara and Tim