Nov 09 Update From Patient Siggy
Dear Friends,
My octopus and I sit next to each other in an aqua leatherette Barker lounger chair on the second floor of Vanderbilt in the outpatient stem cell clinic. The octopus, my new port for those who have just joined us, has three legs and is very quiet, dangling just above my left boob, one leg accessed on Day One through four to drip chemo. At Day Five I start in on a second chemo drug in the next leg. This next chemo is designed to knock out my existing stem cells to make space for the new ones to come. I have one more day, Monday, as an outpatient. Tuesday I start my four day hospital stay for the big guns and the transplant on Thursday.
Before the hospital, I go home every afternoon to my pristine house and spray the kitchen counter with a Clorox solution and feel in control. I could eat off of our bare floors but I promise not to. I change all my down pillows for new ones with hypo-allergic covers and throw out the existing ones, trying not to think about a serious collection of dust mites. Don’t ask how long some of these pillows have supported our heads for a book before sleep. I have become less of a hoarder since the beginning of the preparation for this journey. Cathartic cleaning for cancer is good.
I will probably send more updates during the beginning of this journey. I need my e-mail community close by during this period of isolation. I open a dozen or so messages a day and try to write a quick response to as many as I can. Be patient. I will get back to you all in time.
My dear friend Rachel is bringing meals. Her daughter-in-law had a stem cell at Vandy two years ago and she is a retired caterer who used to do all our big parties so we are blessed.
The Monday I started the pre-day of treatment, I figured I was supposed to be the star of the family. Apparently the Cheek men did not get the memo.
Anne brought me in as Jim was having a “procedure” to break up a big kidney stone.
Wait ‘til you hear what happened the day before. We went on Sunday to visit Jim’s dad, 91, in an assisted living facility nearby. I told him I wouldn’t be seeing him for a while. We have resisted telling him about what I am going through. He has withdrawn into a small world where bodily intake and outtake are the center of his universe and a state of the art walker taking him to three meals is his biggest challenge. He no longer wants to come to our house for dinner. He might fall.
He asked me, “Where are you going?” “I am getting ready to have a medical procedure” I told him. He turned away and waved his hand. I knew I had given him too much information. He doesn’t want bad news from the next generation.
At 5:30 Sunday night we were on our way over to Jamie and Lisa’s for a family dinner and got a call from the nurse at Grandpa’s. He fell in the bath and was on his way in an ambulance to St. Thomas. It was confirmed that night. He broke his hip.
So on Monday, I started my procedure, Jim had his procedure and Grandpa was on the operating table for a shattered hip. And I have had to give up the wine. I have to deal with all of this, drinking herbal tea. But I am not curled up in the corner yet.
Many weeks ago, we learned we couldn’t have a real fire or even real logs in the fireplace. So I had a new – state of the art – gas log fire installed in the living room. We turn it on every night and I curl up there.
My littlest Matthew (six feet but still my littlest) came to visit last week. One of the things we talked about is communication with the grand kids via Skype – the phone with visual pictures of the two people talking. He went and got a portable one and clipped it to my loyal, but old Sony Viao. The picture on his new Apple Mac was great but you could barely see me on the old Sony and the voice was delayed like some old movie that you finally turn off because it’s torture to follow.
“Mom, you need a new computer and you really need to convert to a Mac.” I remember Anne T. and Cindy skiing last spring and over the top about their Macs before and after the slopes. Mattie and I went to the Apple store. Just being there is a trip as I am sure most of you know. I was skeptical and Matt mentioned his brothers would kill him if he talked me into something that added to my frustration as I enter this phase of my life. What to do, what to do, But I fell in love with the new – under three pound – Mac Book Air.
For a hundred bucks they take your old laptop, convert all your stuff and give you an hour intro lesson the next day. They give you support, as much as you want, any time you want for a year. So here I am with my new, shiny, silver laptop that I can barely feel on my own lap. Jim took a picture of me choosing to work on the Apple or continue reading Alice’s new book, Rebel Yell.
I need several distractions as Jim and I dance to a new tune, trying to stay in sync, sometimes working, sometimes not. He has his health issues, which I really am not in the mood to even hear about and he is now caregiver for two. Grandpa has already been transported to the nursing home section of his retirement community but he is very down, not eating, not enthusiastic about pushing his physical therapy needs.
Jim is a rocket scientist lawyer and traveler and restaurant chooser and wine chooser – not applicable to Patient Siggy for the next six months – but a caregiver? He is a star caring for his clients but is in the low part of the learning curve translating these skills to family in peril.
Oldest Jamie and Lisa have been great but they do have a six and four year old and a full life and now have to help with Grandpa. I asked if I could go see him in the nursing home and three nurses at their station at Vandy said in unison, “No.” I guess there are lots of germs in nursing homes. There are germs everywhere. And now I need to be very careful of anyone who gets the Swine Flu spay instead of a shot. Stay away from me if you have had the spray. It could be very dangerous so I need to avoid any public place.
Daniel and Anne also come for a brief visit and we have a family dinner in our kitchen with Baker and Jamie doing acrobatic tricks.
I have a team of about 20 friends in the inner circle who have taken a caregiver class or passed on the info to one or two others. They are sharing duties taking me back and forth to the hospital when Jim is not available. I o have a professional caregiver who will help me between 8 a.m. and 4 p.m. during the week.
So here I am with my octopus and new Mac Air to keep me company each day and I am turning into Grandpa. I need to write down everything that goes into my body and everything coming out and write it down and turn it in.
The first day in the hospital, for the strong immunosuppressant drugs, I knew why I was in the hospital, chills, shakes, fever, headaches, vomiting and several at the same time. The fever and headache are my favorite combination. Day Two and Three do get a lot better and then the stem cell is almost a non-event. Kelley and Martie and Jim and I watch the two small bags of red potion, like blood, drip into my veins and then it is done, over. Is this it? Yes, this is it. For two years we have been thinking about this procedure and it is over. Oh, and most important, the best donors are male and if female with the fewest pregnancies (as we give our immunities to our children.) My donor is a young male, 23, with my same blood type and a perfect 10/10 match. I think the stars are aligned.
When I walked into my hospital room, there was a small sign on the door that read, “Life is not measured by the breath we take but by the moments that take our breath away.” When I was about to leave, the staff gives me a tee shirt that says, “Life begins at day “0”.
I get home the day before Halloween and find a blown up picture of six of my friends sitting at the wall, ready for the sunset at “El Barco” last August in Mallorca. Will I be back next summer? I think so. I hope so. I sit the picture in my bedroom and dream.
Hugs, Siggy
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