Dec 09 Update From Patient Siggy
Dear Friends
I can’t believe Christmas is almost here and the last six weeks of recovery have flown by. Jim has turned into the caregiver of the century. From the day I went to the hospital, he has been with me every step of the way, following my meds, following my blood levels, being there to talk with the docs each day and turning into a gourmet chef at night. I will say, “How about beef stroganoff?” And off he will go to a cookbook declaring, “I could really get into this,” and then to the market for food and then humming in the kitchen and chopping and dicing away. He brings me my dinner by the fire and then takes the dishes and cleans the kitchen to a sparkling finish. He never seems to be impatient. I remember when he had his hip replaced and my impatience and I feel guilty. I have seen a side of him that is new and shiny and I am so blessed and in love all over again. His kidney stones seem to be a thing of the past. Grandpa, however, is in the nursing home at Blakeford and struggling with the physical therapy people each day to stand on his own and take a few steps and eventually get back to his walker and assisted living. Being motivated to improve when you are 91 is not an easy hurdle.
To summarize where I left off on our last update, I came home from the hospital – a five day stay – on Halloween night and the month of November followed a set pattern. I am at Vanderbilt almost every day and from my barker lounger, curled up in one of my shawls, I read emails and light novels, if it is a good day and just sit if it is a bad day as I wait for fluids to drip into my octopus port. I can tell from the first week my octopus is an unhappy camper. And I have been so nice to him, including him in my story and emails. And a friend even sent me a cloth version of my octopus to sit on the chair in my bedroom and keep me company. What more could the real octopus want? He didn’t mind the drugs dripping into my little body but he was very stingy in giving back any blood and I tried to explain to him that part of the drill was they would need new blood every day to measure and track the progress of turning my blood into my donor’s blood. The docs put the port in the last week of October. By the first Tuesday in November, the nurses were having trouble drawing blood from the lines. They would try one and when nothing happened they would go to the next and maybe get blood out of the third. By the fourth day, they needed to add a fluid to stimulate the line enough to get a little blood. Something was wrong. I could never understand the doctor’s explanation of the problem but the bottom line is they want me to go back to the operation room, go back under “twilight sleep”, and “thread” a new line through the existing space. Say what? I don’t know how they do this nor do I want to know but I suddenly have a new octopus port. I’m am sore for a few days and then begin to adjust but a week later I am sore again and think maybe I have slept on my octopus and he is in need of oxygen. I tell the doc the next day. He takes one look and says, “That needs to come out today, as soon as possible. You have gotten a “tunnel” infection in your line and I will need to put you in the hospital.” Say what?
So back in the hospital, they take away my octopus, not a pleasant procedure, and put what is called a piq (pick), in my arm, on the other side, with two lines instead of three. I am not sure the new port is worthy of a name, with only two measly arms. I’m still thinking about that one. I have tears running down my cheeks as they put it in, in the hospital room. I chalk it up to too many procedures in too short a time and my tolerance is at ground zero. And then I try to remember how lucky I am.
How can I complain? 90% of people under going a stem cell transplant live in a hotel room or small apartment next to the hospital for three months. I come home each and look at the birds from the feeders outside my bedroom window. In the afternoon, I move to my cozy fake fire and sit in my chintz chair and read responses from hundreds of supporters who write wonderful soothing words of encouragement and healing. One friend told me she would come and eat off of my super clean kitchen floor and another friend declared, “We will sling unhygienic mud at each other next summer in Mallorca.” I love all my supporters who thank me for sharing and who have asked to be a part of my journey. I love this from Joan, “Your attitude is a strong message to all of us.” I am certainly going through dry periods of non writing but when I finally sit down the words just pour out as I type the keys. Even when I am not writing, I think about my cyberspace team and think about what I can share, what I can pass on, what will help me heal and maybe you heal.
And how can I not heal and grow ever stronger when Beth writes, “As you travel the wild, curvy, and bumpy road of your “medical procedure”, YIKES, I am thinking of you all surrounded by pink light, and radiant health blossoming out of the fervent prayers of the growing circle of people who care about you.”
Daniel and Anne are here for Thanksgiving and we have a great but quiet visit. The picture Anne takes of Daniel and me in the living room, by the fire, sums up the tone of the weekend. As you can see, I am back in my scarf. My hair started to shed as soon as I got home from the first hospital visit. It disappears so quickly this time, or is it with round three the drill is embedded. Hair loss is still a bitch. I like to think my granddaughter, Baker’s haircut while daddy was supposed to be watching, is a sympathy move. Her mom is not happy about this creative move right before the Christmas.
During Daniel’s visit, he records Grandpa talking about his life, especially his experiences during WWII and his participation in the Battle of the Bulge. These sessions really perk Grandpa up and bring out the twinkle in his eyes.
My road is slow but I am making good progress. My blood counts went to zero after the transplant – which is what they are supposed to do - but are now moving up the scale. Over the last month, I have been fighting several infections, no surprise with no immune system. So when I have a cough and nasal congestions they hit me with IV antibiotics. Last week I had some nausea and low appetite and they did an endoscopy – tube into tummy but I was in another “twilight sleep” and didn’t feel a thing – and found a small amount of graft vs host disease as well as another infection. Dr. John told me at the beginning you want to have some graft vs host so you know your cells are fighting and building strength. So I am now taking steroids and more IV antibiotic for the other bug they found but this is just part of the drill. The steroids give me much more energy but I hope won’t keep me awake at night. I just started two days ago and the jury is still in the back room deliberating about how many hours I will sleep.
Even if I have a little less sleep, there is no Christmas stress this year. As those who have been following me remember, I can have no live or fake tree or garland or flowers or anything added to my sterile house that will be a dust collector. Don’t tell the nurses but I did get out my Santa collection. My helper, Marcia, dusted them for days outside. I also have a selection of angels scattered on tables and windowsills through out the house and watching over me. Just as I made offerings in the temples of Japan last fall, I am leaving all doors open and I am a huge believer in angels watching over me. But they will see no shopping or wrapping or mess.
The best news is Barbara and Kevin will join us from Madrid for Christmas week and Matthew and Jessie will visit from Colorado. We will hunker down and do puzzles and chat and have mellow festivities, en famille. Christmas parties and gatherings with friends will have to wait for next year. And you know, it’s kind of nice. I am more relaxed than I have ever been during the month of December when I am usually running ragged trying to fit it all in adding more each year to make the season bright.
The hardest is not seeing our Christmas tree touching the ceiling and squinting my eyes at night to add a magical glow to the way the little white lights twinkle. And even harder is not watching my amaryllis bulbs sprouting green shoots out of the top and then turning into luscious big blooms by Christmas eve and lasting though the end of February when the first spring flowers start to push out of the ground outside my windows. But the big tree outside, by the front door, is covered with white lights and the ground around my garden will still burst with bloom before I know it. And by March my first crucial 100 days will be almost over.
By the beginning of December, I only need to go to the hospital three times a week. I can even do an IV antibiotic at home with Medical Home Health Care. Whoever is here helps insert the portable IV in my new piq and I can put the small bag in my pocket and walk around. I have a small group of friends who took the caregiver class at Vanderbilt. I have a wonderful woman, Anne, who is with me each Monday through Friday from 8 to 4. And then one of my caregivers comes for a visit in front of the fire from 4 to 5:30 and then Jim is usually home and ready to heat up one of cook and friend Rachel’s delicious dinners or he is coming up with something imaginative himself. And then we sit in front of our no fuss, no bother, fire that turns on with the quick turn of a knob and savor the sound and heat from the flames and count our blessings. Even with the few glitches and germs, I am following the bench mark of blood count numbers going back up and soon, if all goes well, my blood will be that of a twenty three year old, generous boy, who was one of the many who are willing to be a stem cell donor. I understand that after two years, I will be able to contact him, if he is willing, and say thank you.
I can hardly wait for next week when my brother and his bride and youngest son and his bride will all join us around the fire for a week of Christmas joy. Maybe, in the stillness of paired down rituals, we can experience new insight into the true meaning of Christmas. I thank you all for being with me and wish you all the joys of the season.
Bless you all,
Hugs, Sigourney
I have an improved web site, www.patientsiggy.com, if you want to see back updates.
I love this poem about living. This poem makes me grab life and hold tight.
By Nazim Hikmet
Living is no laughing matter:
you must live with great seriousness
like a squirrel, for example--
I mean without looking for something beyond and above living,
I mean living must be your whole occupation.
Living is no laughing matter:
you must take it seriously,
so much so and to such a degree
that, for example, your hands tied behind your back,
your back to the wall,
or else in a laboratory
in your white coat and safety glasses,
you can die for people--
even for people whose faces you've never seen,
even though you know living
is the most real, the most beautiful thing.
I mean, you must take living so seriously
that even at seventy, for example, you'll plant olive trees--
and not for your children, either,
but because although you fear death you don't believe it,
because living, I mean, weighs heavier.
II
Let's say you're seriously ill, need surgery--
which is to say we might not get up
from the white table.
Even though it's impossible not to feel sad
about going a little too soon,
we'll still laugh at the jokes being told,
we'll look out the window to see it's raining,
or still wait anxiously
for the latest newscast ...
Let's say we're at the front--
for something worth fighting for, say.
There, in the first offensive, on that very day,
we might fall on our face, dead.
We'll know this with a curious anger,
but we'll still worry ourselves to death
about the outcome of the war, which could last years.
Let's say we're in prison
and close to fifty,
and we have eighteen more years, say,
before the iron doors will open.
We'll still live with the outside,
with its people and animals, struggle and wind--
I mean with the outside beyond the walls.
I mean, however and wherever we are,
we must live as if we will never die.
III
This earth will grow cold,
a star among stars
and one of the smallest,
a gilded mote on blue velvet--
I mean this, our great earth.
This earth will grow cold one day,
not like a block of ice
or a dead cloud even
but like an empty walnut it will roll along
in pitch-black space ...
You must grieve for this right now
--you have to feel this sorrow now--
for the world must be loved this much
if you're going to say "I lived" ...