And I had the thought stepping on to the ship, but who will make you coffee? Who will tell you look! day stands in silvered sandals at you door? Who will say our lives are given to us not to keep but to burn for the heat they can create?
Us
- Danette and Joseph
- This Blog was first started to keep family and friends posted on my trek through the maze of chemotherapy. Now it will be used to keep those same folks updated on Joseph's trek through that same maze. We're all in this together.
Friday, July 13, 2012
Twenty-one cups
When I boarded Davis 8 with my ticket guaranteeing three weeks passage, I felt a surge of panic leaving land. The idea of closing one door, then another, neither of which I can step beyond for the entire passage made me shudder. I looked out the window and saw the wind, the waves of heat, people walking in the street, hospital staff arriving - but I could not feel any of it. On windy days the hospital seemed most like a ship, the trees planted to the houses north of the tall building were green water tossing, swirling, slamming their green waves against the passive, mute walls.
And I had the thought stepping on to the ship, but who will make you coffee? Who will tell you look! day stands in silvered sandals at you door? Who will say our lives are given to us not to keep but to burn for the heat they can create?
And I had the thought stepping on to the ship, but who will make you coffee? Who will tell you look! day stands in silvered sandals at you door? Who will say our lives are given to us not to keep but to burn for the heat they can create?
Thursday, July 12, 2012
Second interlude
Dr. Pai, the fellow, arriving every day except Sunday shortly after nine. Gray wisps streaking his black hair, thin with bright alert eyes, the grey from fourteen years of school to specialize in oncology. He will teach for his clarity. Ask him a question about myleoablation or vaccinating your children the first Friday you are in the hospital, he takes his time explaining in detail what is known and what is not. "Varicella is a live vaccine so it will be shed in several weeks. A similar question came up with another patient. The only paper I am aware of treating the subject suggests 2-4 weeks of virus shed. It would have been better to do it a month ago!" His interviews started with how are you? Hearing no complaints he went (felt compelled?) through the list. No nausea? No shortness of breath? No pain? Did you ride the bike this morning? How long? Any sores in you mouth? And then with a glance at the calendar, " excellent, we'll you are at day 5. You are nearing the time when you will feel the effects of the therapy." Nothing remotely British about him, I half-expected him to eject a "carry on!" as he passed into my foyer.
During my stay, I had the chance to meet - and be patient to - all 3 attending bone marrow transplant physicians. They rotate on fourteen day cycles, spelling each other for meetings or vacations. Drs. Abedi, Richman and Tuscano work with their fellows - in my case the constant Dr. Pai - in different ways. Although deeply practiced in East coast hospitals, Dr. Abedi made his own physical exam daily for the ten days we were together. His exams varied in relation to the stage in treatment. Dr. Richman never laid a hand on me, but her eyes were busy and her direction of the conversation could ferret any problems. Dr. Richman has been with the tranplant unit since its inception. The nursing staff speak with awe of her complete awareness of patient status when she is the attending.
Dr. T is like a friend from school with whom you dreamed about your futures and here is taking care of you. His exams varied with the day. In fact at the exit clinic visit - that is the first visit after leaving the hospital within 7 days - after listening to heart and lungs, and then checking the spleen and the liver for swelling, he commented, " with imaging as powerful as it is today, there is not much we do in clinic to assess status" . Keep two images in mind. One the day he hustled into my room with Abedi, the double barreled catheter spitting blood on my chest, ready for action but letting the nurse work through the problem. The second is his hands - wide, fleshy, strong with grip ready to spiral a needle into you iliac crest as he stands on the bed above you for leverage. "Bone despite it regular cycling of it calcium and phosphorus content is remarkably hard". The same hands fix bicycle flats or change toilets as needed. A man for the day, whatever it might bring.
I must not forget my most constant of companions during my stay " Igore". We met and became formally attached in room 77. If I placed Igore in the center of the room, I could almost reach everything I needed - my clothes, the table, the phone whose daily ring meant tomorrow's meal will be scheduled. Igore is a stainless steel version with good wheel bearings - the opposite to the plastic ones used in the clinic where uneven floor surface could spit you to the ground, your IV pole chasing you down. Igore quickly took over room 77, making it clear that we were in this together. Physical adornment and the ability to be heard were important to Igore. Here the two of us are taking the hallowed daily shower. If you look closely, you can see the bells to remove all obstacles, or the way through all thresholds hanging on Igore.
During my stay, I had the chance to meet - and be patient to - all 3 attending bone marrow transplant physicians. They rotate on fourteen day cycles, spelling each other for meetings or vacations. Drs. Abedi, Richman and Tuscano work with their fellows - in my case the constant Dr. Pai - in different ways. Although deeply practiced in East coast hospitals, Dr. Abedi made his own physical exam daily for the ten days we were together. His exams varied in relation to the stage in treatment. Dr. Richman never laid a hand on me, but her eyes were busy and her direction of the conversation could ferret any problems. Dr. Richman has been with the tranplant unit since its inception. The nursing staff speak with awe of her complete awareness of patient status when she is the attending.
Dr. T is like a friend from school with whom you dreamed about your futures and here is taking care of you. His exams varied with the day. In fact at the exit clinic visit - that is the first visit after leaving the hospital within 7 days - after listening to heart and lungs, and then checking the spleen and the liver for swelling, he commented, " with imaging as powerful as it is today, there is not much we do in clinic to assess status" . Keep two images in mind. One the day he hustled into my room with Abedi, the double barreled catheter spitting blood on my chest, ready for action but letting the nurse work through the problem. The second is his hands - wide, fleshy, strong with grip ready to spiral a needle into you iliac crest as he stands on the bed above you for leverage. "Bone despite it regular cycling of it calcium and phosphorus content is remarkably hard". The same hands fix bicycle flats or change toilets as needed. A man for the day, whatever it might bring.
I must not forget my most constant of companions during my stay " Igore". We met and became formally attached in room 77. If I placed Igore in the center of the room, I could almost reach everything I needed - my clothes, the table, the phone whose daily ring meant tomorrow's meal will be scheduled. Igore is a stainless steel version with good wheel bearings - the opposite to the plastic ones used in the clinic where uneven floor surface could spit you to the ground, your IV pole chasing you down. Igore quickly took over room 77, making it clear that we were in this together. Physical adornment and the ability to be heard were important to Igore. Here the two of us are taking the hallowed daily shower. If you look closely, you can see the bells to remove all obstacles, or the way through all thresholds hanging on Igore.
Tuesday, July 10, 2012
Sweeping up
Twenty days in the hospital and twenty infusions, the last of which was today. The last three infusions have been a dose of Rituxan weekly. The first dose was at the end of my trip at sea while I was still aboard the ship. Rituxan is a chimeric - part human part mouse - antibody that binds to B cells bearing the cell surface marker CD 20 in the blood, lymph and bone. The antibody bound B cells then begin to die off, through a process directed by the immune system. Rituxan does not bind to the progenitors of those B cells, the hematapoetic stem cells.
Although Rituxan is cytotoxic ( kills cells) to B cells with CD 20 surface proteins, it is not "chemotherapy". The antibody- antigen binding is highly specific targeting B cells. Chemotherapy targets actively growing cells of the body. The collateral damage of chemotherapy is that non- malignant cells are also damaged. You lose your hair. Your mouth, esophagus, and gut hurt because these rapidly dividing cells are also taken out by the chemotherapy. Most chemotherapies do not cross the blood brain barrier. There is experimental evidence that Rituxan plus CHOP crosses the barrier into the cereborspinal fluid, significantly reducing the incidence of CSF cancers (http://www.rituxan.com/hem/hcp/mechanism-action/index.htm). When I was diagnosed 10 years ago, Rituxan was still in clinical trials. The first antibody to be approved in cancer therapy, in combination with traditional chemotherapies it prolongs overall survival, the gold standard for therapy. Rituxan does have a dark side. It can produce such a rapid die off of tumour cells that the blood floods with the toxic contents of millions of cells disrupting blood chemistry, 'tumor lysis syndrome'. Patients can also have a strong allergic like reaction to the murine portion of the antibody. Rituxan can also re- activate dormant hepatitis B. Not surprising as it reduces an important component of your immune system - B cells those that are malignant and those providing immune protection. Most people react to Rituxan on the first infusion; administration of pre-meds that rein in the infusion rate, gradual increase of infusion rate, and close monitoring of vitals during infusion make clinical management of reactions possible.
Doctors administer Rituxan with chemotherapy, use it as a in vivo purge when "priming" the body for transplant, use it on the first day of hi dose chemotherapy, and then use it to sweep up the blood of any residual malignancy post transplant.
Shortly after 1 PM, both Dr. T and Richard (remember Cerberus) surprised D and I with a visit in the infusion room. After asking if I was doing OK, he said the nurses called and said my body surface area - the metric used to determine all infusion mixes - had changed due to weight loss.
" You loosing weight?"
" At my lowest last week, back up to 170" .
" The nurses wanted to know if I wanted to change the rate. I told them full strentgh because a life half lived leaves room for regret. Want none of that around here".
He left the room laughing.
Those interested in the proposed mechanisms of how Rituxan works should take a look at http://www.rituxan.com/hem/hcp/mechanism-action/index.htm.
Although Rituxan is cytotoxic ( kills cells) to B cells with CD 20 surface proteins, it is not "chemotherapy". The antibody- antigen binding is highly specific targeting B cells. Chemotherapy targets actively growing cells of the body. The collateral damage of chemotherapy is that non- malignant cells are also damaged. You lose your hair. Your mouth, esophagus, and gut hurt because these rapidly dividing cells are also taken out by the chemotherapy. Most chemotherapies do not cross the blood brain barrier. There is experimental evidence that Rituxan plus CHOP crosses the barrier into the cereborspinal fluid, significantly reducing the incidence of CSF cancers (http://www.rituxan.com/hem/hcp/mechanism-action/index.htm). When I was diagnosed 10 years ago, Rituxan was still in clinical trials. The first antibody to be approved in cancer therapy, in combination with traditional chemotherapies it prolongs overall survival, the gold standard for therapy. Rituxan does have a dark side. It can produce such a rapid die off of tumour cells that the blood floods with the toxic contents of millions of cells disrupting blood chemistry, 'tumor lysis syndrome'. Patients can also have a strong allergic like reaction to the murine portion of the antibody. Rituxan can also re- activate dormant hepatitis B. Not surprising as it reduces an important component of your immune system - B cells those that are malignant and those providing immune protection. Most people react to Rituxan on the first infusion; administration of pre-meds that rein in the infusion rate, gradual increase of infusion rate, and close monitoring of vitals during infusion make clinical management of reactions possible.
Doctors administer Rituxan with chemotherapy, use it as a in vivo purge when "priming" the body for transplant, use it on the first day of hi dose chemotherapy, and then use it to sweep up the blood of any residual malignancy post transplant.
Shortly after 1 PM, both Dr. T and Richard (remember Cerberus) surprised D and I with a visit in the infusion room. After asking if I was doing OK, he said the nurses called and said my body surface area - the metric used to determine all infusion mixes - had changed due to weight loss.
" You loosing weight?"
" At my lowest last week, back up to 170" .
" The nurses wanted to know if I wanted to change the rate. I told them full strentgh because a life half lived leaves room for regret. Want none of that around here".
He left the room laughing.
Monday, July 9, 2012
Life After Transplant
People have been asking what's going on now that Joseph is two weeks out of the hospital.
I feel as if we're standing with an enormous peak shadowing our backs, and airy lightness ahead.
So, what have we been up to? Healing.
This was a couple days after coming home. Doesn't he look good?
Here we are at the arboretum a week after, having a full moon picnic. Well, the moonlight came out later.
And here is an Anise Swallowtail that the kids nursed back to health. We watched her fly away above the trees in that special, awkward, flopsy motion.
Zoe and Kai have been a great help around the house. They're learning the value of chores, and are pitching in whenever we ask. Unloading groceries, folding laundry, wiping knobs and switches, picking up their rooms, and feeding the animals are the new standards.
Joseph has been riding his stationary bike in the backyard, although his body is itching to get out on the open road. He's feeling so strong and energetically fit that he has to hold back from many activities. He can't wait to swim, go to the gym, play in the dirt, hike and run. But he loves reminding me that he can't scrub a toilet or touch raw meat for a few more months. He hasn't gone out in public yet because he says the mandatory mask just screams, "Look at me! I'm a sick person!" For now he's just laying low.
Last weekend we rented a canoe and explored Solano Lake for a few hours. It was lovely being on the water watching blue herons fishing for crawdads, swallows swooping for insects, peacocks herding their babies, and wood ducks preening.
The kids and I have been frequenting our favorite store, Target, where we find much-earned treasures.
We go to movies, cafes, the swimming pool, and on scooter rides so Joseph can work from home in peace. Kai is starting to swim like a fish, and Zoe is training for a kids' triathlon. They both have another week of science camp coming up, which they loved earlier in the summer. I am running 3-4 times a week, and getting out with friends for coffee, and occasionally sketching.
Yesterday we went to the Marin Headlands. Found a nice walk, and then played in the sand.
Only two weeks and it feels like months. We've lived every day to its full potential. We make delicious meals together, take walks, read, talk about worries and fears, draw, and play together.
We are healing.
Saturday, June 30, 2012
libellula
Zoe finally had a visitor.
She was very excited to tell the tale...Out in the garden, while collecting eggs, she looked up at one of Joseph's metal sculptures. Somewhere between the basil and the peppers there was a copper colored dragonfly, warming in the morning sun. So, Zoe walked up to this firey insect, and plucked it off of its perch with her pincher fingers. After getting a close-up look, she let go, and the dragonfly fluttered away, over the trees.
Wednesday, June 27, 2012
Eam roseae
Even though my window faced north, there was a corner of my room that opened with the sunrise everyday. Coffee made, I would sit in the breaking light to watch the sunrise- bullfire- fill the room. How I have lived from that sun!
Monday, June 25, 2012
At the Beginning
So, Joseph is home. It is surreal. We pulled up in front of the house and face-timed the kids, pretending we were still at the hospital. Kai asked, "Where are you? Are you outside? They let you in the parking lot?" Next thing we knew, Zoe was running out of screen-view and into real-view. It was heart-wrenching. The kids' faces were priceless as they realized their dad was back. Wow. I wanted to wrap the moment up and put it in my pocket. I think I did, actually.
But let's rewind...After getting his port yanked from Dr. Ross, the surgeon who installed the crazy thing, we started packing up his room. I could tell that Joseph was agitated and a bit reluctant to leave his 8th story view. But we walked out with bike in tow and heads held high through the hall. His nurse, Natalie, gave him a parting hug and told him she never wanted to see him again. We made it to the elevator and down. Walking, walking, walking the maze toward the parking lot, neither of us speaking. As we passed through the double doors to the outside, I was hauling ass toward the car, and realized I had lost my partner. As I stopped and turned around, there he was, at a stand-still. Eyes closed, hat off, face to the sun. Of course. It's the first breeze, the first light, the first breath of outside in 20 days. Of course. I found his shoulder and cried. And cried. And cried. He's been through so much. so so much. And he made it. We made it. And drove home with his hand on my leg in silence. Traffic was thick, and crazy drivers abounded. None of it mattered. We were free and on our way home.
But let's rewind...After getting his port yanked from Dr. Ross, the surgeon who installed the crazy thing, we started packing up his room. I could tell that Joseph was agitated and a bit reluctant to leave his 8th story view. But we walked out with bike in tow and heads held high through the hall. His nurse, Natalie, gave him a parting hug and told him she never wanted to see him again. We made it to the elevator and down. Walking, walking, walking the maze toward the parking lot, neither of us speaking. As we passed through the double doors to the outside, I was hauling ass toward the car, and realized I had lost my partner. As I stopped and turned around, there he was, at a stand-still. Eyes closed, hat off, face to the sun. Of course. It's the first breeze, the first light, the first breath of outside in 20 days. Of course. I found his shoulder and cried. And cried. And cried. He's been through so much. so so much. And he made it. We made it. And drove home with his hand on my leg in silence. Traffic was thick, and crazy drivers abounded. None of it mattered. We were free and on our way home.
Port
Coming into port was easier than expected. One of the anchor lines caught early causing the boat to lurch. I was thrown into the porthole wall of my cabin bruising my shoulder. Fortunately, the Rituxan was finished so the fact that my port was yanked out with the fall is ok. Not to worry, captain sent his best attendants to make sure the catheter exit did not bleed.
Now to test this sea legs on solid land again.
Now to test this sea legs on solid land again.
Land Ho!
Through the weekend, the doctors after asking how I was feeling, told me that any day (+10, friday) I should start to feel better. The first pop came Saturday. If you have ever seen footage of rocket launches where the first rockets 'warm' the firing system but do not generate any thrust - what you see is a rocket with fire and smoke at its base just beginning to tremble. Well that was Saturday. On Sunday (lift-off) my counts rocketed to 12,000 neutrophils per cubic millimeter of blood ( think eye dropper drop of water), almost 3 times normal amount. But this is medicine and the beauty of the body in action. The daily shots of the cytokines, GCSF, tickle the nested stem cells into increased differentiation and production of neutrophils, the white blood cells best suited to fight bacterial infections. And they give me a ticket home.
Before I walk out the door and feel the sun again on my face, I have three activities to finish my stay. The first is receive an infusion of Rituxan, the antibody that binds to B cells and drives their removal. You can think of it as sweeping up. Next, one of the surgeons will pull my double barreled aphoresis catheter and we wait to make sure there is no bleeding. Last, the BMT nurse prepares you for discharge by talking you through exposures to avoid. This includes what foods to not eat, what places and what behaviors to avoid.
What? My counts are good, even better than good and I have to watch what I eat, be wary of places with lots of people? The number of neutrophils provides a barometer for leaving the hospital. What physicians also know is that your immune system, although populated with the essential components, remains naive , as if you were a newborn. The components of your immune system that recognize pathogens needs to be re-educated. Some of the cells that will do the teaching are in your blood and some were with the frozen stem cells that were transplanted back into you. The time to re- inform the immune system depends upon the patient, the amount of cytoxic treatments, and the type of transplant made. Ballpark figures are 3-6 months to a year for "return to normal" state. Dr. T speaks in terms of steps - 1 month, 3 months, GO.
The next part of rebuilding health happens at home.
Chart show trajectory of rocket launch. Alternatively, chart shows effects of HDT on neutrophil counts. Below the red line, patient is neutropenia and at risk of infection. From the patient perspective the time spent below the red line is the most difficult. Both you and time move in a very slow dance.
Before I walk out the door and feel the sun again on my face, I have three activities to finish my stay. The first is receive an infusion of Rituxan, the antibody that binds to B cells and drives their removal. You can think of it as sweeping up. Next, one of the surgeons will pull my double barreled aphoresis catheter and we wait to make sure there is no bleeding. Last, the BMT nurse prepares you for discharge by talking you through exposures to avoid. This includes what foods to not eat, what places and what behaviors to avoid.
What? My counts are good, even better than good and I have to watch what I eat, be wary of places with lots of people? The number of neutrophils provides a barometer for leaving the hospital. What physicians also know is that your immune system, although populated with the essential components, remains naive , as if you were a newborn. The components of your immune system that recognize pathogens needs to be re-educated. Some of the cells that will do the teaching are in your blood and some were with the frozen stem cells that were transplanted back into you. The time to re- inform the immune system depends upon the patient, the amount of cytoxic treatments, and the type of transplant made. Ballpark figures are 3-6 months to a year for "return to normal" state. Dr. T speaks in terms of steps - 1 month, 3 months, GO.
The next part of rebuilding health happens at home.
Chart show trajectory of rocket launch. Alternatively, chart shows effects of HDT on neutrophil counts. Below the red line, patient is neutropenia and at risk of infection. From the patient perspective the time spent below the red line is the most difficult. Both you and time move in a very slow dance.
Day 20
Joseph's coming home to-day, do-da, do-da!!!!!!
Woke up with the light, head full of last minute details that need attention before his release. Bleach wipes in the bathrooms, paper towels by the sinks, hand sanitizers sprinkled around the house, bottled water a-plenty, and a pantry shelf dedicated to Joseph's (only!) snacks. Off to Nugget for ingredients to make his favorite dinner...Linguini with marinara sauce, chicken sausage, green salad and bread. The sauce is cooking already in anticipation of his foot through the door.
The kids don't know today is The day. They are at science camp and will come home to a Gargantuan Surprise!
I have mixed emotions at the moment. Excitement prevails, but there is a skosh of anxiety around the exposure risks. The nurses and doctors don't mean to frighten their transplant families, but it is essential that he follow certain guidelines that will take vigilance.
I also am wondering who this new Joseph will be, and how he will fit into our old life. If any change occurred within me throughout the last 20 days, it is that I love him even more than before. When the shit hits the fan, you see a person's true character emerge. I always knew Joseph was strong and positive and passionate, but during the past three weeks I also saw a determination that was ever-present. He didn't give in to his situation. Never felt sorry for himself when he was sick. Never got upset at the nurses for interrupting him. Didn't get angry at being attached to a pole 24/7.
I watched him adapt and accept his surroundings, yet not succumb to them.
So, hugs are the order for the day. Scrubbed ones, of course.
Woke up with the light, head full of last minute details that need attention before his release. Bleach wipes in the bathrooms, paper towels by the sinks, hand sanitizers sprinkled around the house, bottled water a-plenty, and a pantry shelf dedicated to Joseph's (only!) snacks. Off to Nugget for ingredients to make his favorite dinner...Linguini with marinara sauce, chicken sausage, green salad and bread. The sauce is cooking already in anticipation of his foot through the door.
The kids don't know today is The day. They are at science camp and will come home to a Gargantuan Surprise!
I have mixed emotions at the moment. Excitement prevails, but there is a skosh of anxiety around the exposure risks. The nurses and doctors don't mean to frighten their transplant families, but it is essential that he follow certain guidelines that will take vigilance.
I also am wondering who this new Joseph will be, and how he will fit into our old life. If any change occurred within me throughout the last 20 days, it is that I love him even more than before. When the shit hits the fan, you see a person's true character emerge. I always knew Joseph was strong and positive and passionate, but during the past three weeks I also saw a determination that was ever-present. He didn't give in to his situation. Never felt sorry for himself when he was sick. Never got upset at the nurses for interrupting him. Didn't get angry at being attached to a pole 24/7.
I watched him adapt and accept his surroundings, yet not succumb to them.
So, hugs are the order for the day. Scrubbed ones, of course.
Saturday, June 23, 2012
Fiona's magic
Even before she stepped in the room, the voice of my new night nurse carried her into the room. Hoarse, deep and more than a little raspy, her voice spoke of cigarettes loved through the good and bad times of her life. The light she could trust whenever things turned from OK into something else. Had not life been like that? Wasn't she always moving from situations that were good to they less than good? Reality check she says to herself, do a reality check Fiona. Your life is one of compartments. At work, where you can control your actions and people have defined roles, like nurse or patient or doctor, things stay OK because people excell at fitting those roles. Outside of work is another story.
As she came close to me, I could tell that cigarettes had been a tool of the past. Working on the 8th floor, a cigarette break would take all of her time. Unless she wanted to copy the patient and his friend and risk getting caught for smoking in the stairwell, to smoke she would have to take the elevator down eight floors, join the staff shuffle across the parking lot to stand in the shade of nearby houses where she could smoke in peace off UC property. But the part of her that needed to smoke smoldered inside her. Compared to free time, work was clear-eyed, consistent. Even though patients in the ward presented with different needs based on their particular life threatening disease and it's stage of treatment, most reactions could be and were calendarized. In fact the calendar was an essential tool for communication between patient and staff.
Her voice still had the urgency and excitement of a loud noisy bar on Friday night in it. It was Friday night! She spoke louder than the space required, perhaps hearing assurance in her own rough laugh. Who was the last one to say he loved her laugh? Her hair showed the effects of time, the tell-tale streaks that maturing women have put there as if to say "Time you will write no more here." She quickly assumed control of the room, telling me what the plan for evening care was. Rather simple really: check vitals at 8; meds (antibiotic, antiviral, digestive, ativan) at 9; check vitals again at midnight, sample blood and change all of your tubing. If the blood work comes back normal, I will let you sleep till 6 am. As she walked out of the room, she paused by the chart on the door. "Looks like your counts might be turning. I will have to work some of my magic".
Magic was not a word she felt in her life. The days when anything was possible had changed into getting her son to school, getting herself to work, buying food, preparing the food, cleaning up from the same. Once finished, repeat. Where in this endless cycle was there a place for transformation, or shape shifting or being simply other than herself? Although it was not, definitely not, magic she had noticed a shift at work. She did not think herself heroic for working with cancer patients. She felt like she had made the obvious choice. Nurses take care of sick people - who are the really sick people? And cancer patients usually felt better after treatment. Not immediately after, those first few weeks could be hell, but then the body righted itself once treatment finished. Many former patients sent notes or stopped by on occasion with words of thanks.
So what was the change she had noticed? The part of her that enjoyed life - listening to music, dancing, drinking with friends, discovering new lovers, eating! seemed to demand less of her. Being a single mother with a teenage son did complicate her life and she was aware of time's effect on her but she still loved to live life. And wasn't it proof enough of your love that your appetites pushed you to new experiences? Once she had briefly thought that working with people who could die in treatment contrasted and strenghtened her choices in how to live her live. Made her life seemed fuller even. But that was not it. The shift had come at work with a patient. It had happened one day with a woman that discharged the very next day. An older patient who dressed herself as if for the outdoors, full of restless energy even with all of the treatments, had said to Fiona " we are each of us magicians. In our heads we have created our world. Our days are spent fitting this vision into our the lives we actually live".
Since that conversation, Fiona had starting paying attention to her choices. She became aware of a tendency on her part to try and steer the day a certain way. Usually, this steering took form in conversation and in trying to push people's reactions or at least the energy of the conversation a particular direction. She noticed that she wanted to leave conversations feeling a certain way. So, she just stopped doing this. Fiona did not know what to call this new "space" or "energy" she was living in. But she felt rather different about herself and thought she was beginning to see different sides of people.
At 620 am, Fiona came into my room with a printed sheet of paper in hand. She seemed surprised to see me awake, " had to make sure the sun comes up".
"Guess what? My magic worked. You are no longer neutropenic. I love being able to share good news with patients!"
As she came close to me, I could tell that cigarettes had been a tool of the past. Working on the 8th floor, a cigarette break would take all of her time. Unless she wanted to copy the patient and his friend and risk getting caught for smoking in the stairwell, to smoke she would have to take the elevator down eight floors, join the staff shuffle across the parking lot to stand in the shade of nearby houses where she could smoke in peace off UC property. But the part of her that needed to smoke smoldered inside her. Compared to free time, work was clear-eyed, consistent. Even though patients in the ward presented with different needs based on their particular life threatening disease and it's stage of treatment, most reactions could be and were calendarized. In fact the calendar was an essential tool for communication between patient and staff.
Her voice still had the urgency and excitement of a loud noisy bar on Friday night in it. It was Friday night! She spoke louder than the space required, perhaps hearing assurance in her own rough laugh. Who was the last one to say he loved her laugh? Her hair showed the effects of time, the tell-tale streaks that maturing women have put there as if to say "Time you will write no more here." She quickly assumed control of the room, telling me what the plan for evening care was. Rather simple really: check vitals at 8; meds (antibiotic, antiviral, digestive, ativan) at 9; check vitals again at midnight, sample blood and change all of your tubing. If the blood work comes back normal, I will let you sleep till 6 am. As she walked out of the room, she paused by the chart on the door. "Looks like your counts might be turning. I will have to work some of my magic".
Magic was not a word she felt in her life. The days when anything was possible had changed into getting her son to school, getting herself to work, buying food, preparing the food, cleaning up from the same. Once finished, repeat. Where in this endless cycle was there a place for transformation, or shape shifting or being simply other than herself? Although it was not, definitely not, magic she had noticed a shift at work. She did not think herself heroic for working with cancer patients. She felt like she had made the obvious choice. Nurses take care of sick people - who are the really sick people? And cancer patients usually felt better after treatment. Not immediately after, those first few weeks could be hell, but then the body righted itself once treatment finished. Many former patients sent notes or stopped by on occasion with words of thanks.
So what was the change she had noticed? The part of her that enjoyed life - listening to music, dancing, drinking with friends, discovering new lovers, eating! seemed to demand less of her. Being a single mother with a teenage son did complicate her life and she was aware of time's effect on her but she still loved to live life. And wasn't it proof enough of your love that your appetites pushed you to new experiences? Once she had briefly thought that working with people who could die in treatment contrasted and strenghtened her choices in how to live her live. Made her life seemed fuller even. But that was not it. The shift had come at work with a patient. It had happened one day with a woman that discharged the very next day. An older patient who dressed herself as if for the outdoors, full of restless energy even with all of the treatments, had said to Fiona " we are each of us magicians. In our heads we have created our world. Our days are spent fitting this vision into our the lives we actually live".
Since that conversation, Fiona had starting paying attention to her choices. She became aware of a tendency on her part to try and steer the day a certain way. Usually, this steering took form in conversation and in trying to push people's reactions or at least the energy of the conversation a particular direction. She noticed that she wanted to leave conversations feeling a certain way. So, she just stopped doing this. Fiona did not know what to call this new "space" or "energy" she was living in. But she felt rather different about herself and thought she was beginning to see different sides of people.
At 620 am, Fiona came into my room with a printed sheet of paper in hand. She seemed surprised to see me awake, " had to make sure the sun comes up".
"Guess what? My magic worked. You are no longer neutropenic. I love being able to share good news with patients!"
Grafting Achieved
This is the term used when cells multiply exponentially and suddenly. Joseph's blood officially popped this morning! For the past few days, his counts haven't been doing much. Just hovering in the neutropenic (danger) zone, meaning he was highly susceptible to infection. He is now out of "the woods" and on his way to recovery. His gnarly mouth sores will begin to heal and his energy will climb. The prediction is that he will be able to come home next week. We are on high.....
Wednesday, June 20, 2012
Visitors
Three nights ago after coming home from the hospital and getting ready for bed, I found that Kai and Zoe were still awake. They asked if we could go outside to look at the stars. As we made our way to the door, Kai said, "It's my wish to see a shooting star before I die." Zoe informed him that that's what you call a bucket list. And Kai said, "Well then, seeing a shooting star is on my bucket list." As we walked onto the back patio, there was a magnificent shooting star blazing across the northern sky. Kai just about peed his pants he was so excited. It was a gift from somewhere. And so he crossed it off his bucket list.
Two days ago, I was on a run with a friend. We stopped in our tracks when we came upon this Golden Eagle that had just caught a squirrel. He didn't want to leave his meal, so we got pretty close. All of a sudden, he took off and flew straight at our heads. Because the squirrel was so heavy, he was having a hard time gaining elevation. We had to duck in order avoid collision. After some squealing like school girls, we gathered our wits and reflected how special, and possibly symbolic that encounter was.
Yesterday Joseph was visited by a nun named Sister Francesca. She was checking on his well-being and wanted to make sure he was taking time to reflect and connect with his spiritual side, whatever that may be. Joseph described her as exuding a light that was positive and comforting to have in the room. After summating that he had "cut the mustard" and was successfully tapped into something greater than himself, she parted promising to call again.
So, today I told Zoe to keep her eyes open for a visitation, since it's her turn. Who knows what will show up next!
Dog days
Day after day, day after day
We stuck, nor breath nor motion;
As idle as a painted ship
Upon a painted ocean.
Unable to sleep last night, I went up on deck. Midnight had already struck. Most of the crew lay on cots in the sweltering heat. How any one could sleep in this heat was beyond me. I made my way to the forecastle where a glowing red light lit the night watchmen's face.
The ship I put on with is part oil, part wind driven. When winds are favorable the engines are cut and we glide through the water. Our route passes through 2 areas where winds are very rare which is why we have the oil engines. When the ship is being loaded the captain decides between how much cargo and how much oil to carry. Since the captain is paid by the load, he prefers to sail with a full cargo, just bringing enough oil to get through the doldrums. He has also invested in equipment that lets him measure ocean temperatures and see real time satellite data for our route. He changes the route according to ocean temperature and satellite imagery, moving the ship ahead of the low pressures as much as possible.
When I reached the forecastle deck, I was surprised to see the captain there, not the night wtachman. "Midnight passes and you are above deck, Mr. Jacobs. Is that really the best choice? When you put on with us, I understood that you were to remain in your cabin. You cannot trust this crew and your condition, especially now requires you to remain isolated".
"We are becalmed Captain, and I grow restless in my cabin. I have done my work. I have read what I could. Although it may not appear so, I long for the world of action. I want to feel the weight of lines resisting my pull. Surely, there is something I can do above deck".
"The only thing you can do, Mr. Jacobs is return immediately to your room. My orders may not be interpreted. Your life is at risk with every minute above decks. Even more so if you pass by that heathen lot" he hissed pointing at the sleeping crew in cots. " Either you go now or I call your two attendants - but what have you done with them? How did you get past them"?
My two constant companions were sleeping comfortably in the anteroom to my cabin. I had saved my nightly doses of Ativan and made them tea for the evening.
Above deck even with the stagnant air, the great leaden horizon penciled in dark grey, the night sky pierced with so many brilliant lflickerings, the men's voices floating above the heavy listless sea took me, if brieflly, out of myself. Gone was the pain, gone was the weakness, gone was my medicine pack with its constant drip, gone were the hourly interruptions of the two constant ones as they monitored my condition.
How to find the strength to return to my cabin, knowing that the ship's stagnation equalled mine? Every minute longer on the sea meant time away from port. Port, the very place where my condition must improve, might as well be on the opposite side of the world.
We stuck, nor breath nor motion;
As idle as a painted ship
Upon a painted ocean.
Unable to sleep last night, I went up on deck. Midnight had already struck. Most of the crew lay on cots in the sweltering heat. How any one could sleep in this heat was beyond me. I made my way to the forecastle where a glowing red light lit the night watchmen's face.
The ship I put on with is part oil, part wind driven. When winds are favorable the engines are cut and we glide through the water. Our route passes through 2 areas where winds are very rare which is why we have the oil engines. When the ship is being loaded the captain decides between how much cargo and how much oil to carry. Since the captain is paid by the load, he prefers to sail with a full cargo, just bringing enough oil to get through the doldrums. He has also invested in equipment that lets him measure ocean temperatures and see real time satellite data for our route. He changes the route according to ocean temperature and satellite imagery, moving the ship ahead of the low pressures as much as possible.
When I reached the forecastle deck, I was surprised to see the captain there, not the night wtachman. "Midnight passes and you are above deck, Mr. Jacobs. Is that really the best choice? When you put on with us, I understood that you were to remain in your cabin. You cannot trust this crew and your condition, especially now requires you to remain isolated".
"We are becalmed Captain, and I grow restless in my cabin. I have done my work. I have read what I could. Although it may not appear so, I long for the world of action. I want to feel the weight of lines resisting my pull. Surely, there is something I can do above deck".
"The only thing you can do, Mr. Jacobs is return immediately to your room. My orders may not be interpreted. Your life is at risk with every minute above decks. Even more so if you pass by that heathen lot" he hissed pointing at the sleeping crew in cots. " Either you go now or I call your two attendants - but what have you done with them? How did you get past them"?
My two constant companions were sleeping comfortably in the anteroom to my cabin. I had saved my nightly doses of Ativan and made them tea for the evening.
Above deck even with the stagnant air, the great leaden horizon penciled in dark grey, the night sky pierced with so many brilliant lflickerings, the men's voices floating above the heavy listless sea took me, if brieflly, out of myself. Gone was the pain, gone was the weakness, gone was my medicine pack with its constant drip, gone were the hourly interruptions of the two constant ones as they monitored my condition.
How to find the strength to return to my cabin, knowing that the ship's stagnation equalled mine? Every minute longer on the sea meant time away from port. Port, the very place where my condition must improve, might as well be on the opposite side of the world.
Tuesday, June 19, 2012
People are saying, "I read the blog and it's great to be updated, but how is Joseph doing? And how are you doing? And how are the kids?" I guess it's true, I have a fact-recording tendency, while Joseph is fascinated by the process and data.
So, how is Joseph? Up until a few days ago, he was bored, which was a good thing. But then after the transplant, his counts started dropping and he began to feel the effects of the chemo. He only sprouted one sensitive part of his tongue, which is great. Sometimes folks break out in terrible blisters all over their mouths, causing pain while eating. Instead, Joseph has developed those blisters in his gut, causing a more southern pain. He also has been experiencing strong waves of nausea throughout the day. Both the pain and the sick feelings can be subdued with medication, and being with him during these cycles, I can tell that they work. He is functioning at a lower energy level than usual, but that is to be expected with his low blood counts. He takes a couple of naps during the day now, and feels refreshed afterward. He continues to eat his meals, even if he doesn't feel like it, as Dr. Tuscano said that he'll get out of there faster if he eats.
Joseph has developed somewhat of a reputation among the nurses in the ward. They call his the "fun room" because he continues to keep his spirits up and is quite friendly with everyone. He asks them personal questions about their families and hobbies, and they start to open up with him. He hardly ever rings the call button, so they think he's a quiet, low-maintenance patient. They sort of beg for him to need something so they can feel productive. It's funny. The nurses are also amazed that he is out of bed as often as he is. He rides his bike every single day, no matter how low he's feeling, and he sits at the window reading or working on the computer. They comment on how he never watches TV, but finds other things to do to fill his time. They are impressed with the active role he's taking with his healing.
The kids...Because of the wonderful help we've had at home, first Kim and Michelle, and now my parents, the kids are having a great summer so far. Lots of special outings and love. Because of Face Time and me coming home each night, they feel better about the whole situation. Zoe still asks questions that show she is worried, but once she is reassured, it's okay again. They've made a huge calendar of June to help see time passing. Every day they get to cross off, means one day closer to Joseph coming home. They draw pictures for him and then Joseph colors and tapes them to his walls. They're remarkable, sensitive, intuitive kids. And they're ready to see their dad again.
How am I? Sometimes stressed out. Sometimes on autopilot. Sometimes tired. But always happy to see Joseph, and sad when I leave him. The hours spent in the hospital room are quiet. I draw and listen to NPR. I read to Joseph, and sometimes rub his back. We share meals together and chat about the kids. We sometimes touch on how this experience will change him, change us. We always end the evening in his bed, watching one of the BBC shows on the ipad. Right now it's The Murdoch Mysteries. We cuddle and wave goodbye. I use the drive home to process the day. Cry if I need to, or sing, or shout.
And so it goes.
So, how is Joseph? Up until a few days ago, he was bored, which was a good thing. But then after the transplant, his counts started dropping and he began to feel the effects of the chemo. He only sprouted one sensitive part of his tongue, which is great. Sometimes folks break out in terrible blisters all over their mouths, causing pain while eating. Instead, Joseph has developed those blisters in his gut, causing a more southern pain. He also has been experiencing strong waves of nausea throughout the day. Both the pain and the sick feelings can be subdued with medication, and being with him during these cycles, I can tell that they work. He is functioning at a lower energy level than usual, but that is to be expected with his low blood counts. He takes a couple of naps during the day now, and feels refreshed afterward. He continues to eat his meals, even if he doesn't feel like it, as Dr. Tuscano said that he'll get out of there faster if he eats.
Joseph has developed somewhat of a reputation among the nurses in the ward. They call his the "fun room" because he continues to keep his spirits up and is quite friendly with everyone. He asks them personal questions about their families and hobbies, and they start to open up with him. He hardly ever rings the call button, so they think he's a quiet, low-maintenance patient. They sort of beg for him to need something so they can feel productive. It's funny. The nurses are also amazed that he is out of bed as often as he is. He rides his bike every single day, no matter how low he's feeling, and he sits at the window reading or working on the computer. They comment on how he never watches TV, but finds other things to do to fill his time. They are impressed with the active role he's taking with his healing.
The kids...Because of the wonderful help we've had at home, first Kim and Michelle, and now my parents, the kids are having a great summer so far. Lots of special outings and love. Because of Face Time and me coming home each night, they feel better about the whole situation. Zoe still asks questions that show she is worried, but once she is reassured, it's okay again. They've made a huge calendar of June to help see time passing. Every day they get to cross off, means one day closer to Joseph coming home. They draw pictures for him and then Joseph colors and tapes them to his walls. They're remarkable, sensitive, intuitive kids. And they're ready to see their dad again.
How am I? Sometimes stressed out. Sometimes on autopilot. Sometimes tired. But always happy to see Joseph, and sad when I leave him. The hours spent in the hospital room are quiet. I draw and listen to NPR. I read to Joseph, and sometimes rub his back. We share meals together and chat about the kids. We sometimes touch on how this experience will change him, change us. We always end the evening in his bed, watching one of the BBC shows on the ipad. Right now it's The Murdoch Mysteries. We cuddle and wave goodbye. I use the drive home to process the day. Cry if I need to, or sing, or shout.
And so it goes.
Monday, June 18, 2012
Blood poetry part 2
During the 1950's, Dr. Thomas at the Fred Hutchinson Cancer Institute showed that stem cells re-infused into a patient would repopulate the bone marrow (think cells swimming in blood, finding bone, tunneling into the marrow, finding a home, making that home, quiescing, waiting for the day they will be needed). Five Yugoslavian nuclear workers with radiation damaged bone marrow received the first bone marrow (BMT) transplant in 1959 by the french oncologist Georges Mathe. Dr. Mathe then used BMT to treat luekemia patients. Fifty years later, more than 50,000 people had their bone marrow transplanted. Doctor's specializing in blood cancers, hematologists or hemoncs have an excellent (Damocoles' sword) tool in bone marrow transplantation. Even at diagnosis, Dr. T recommended the BMT has a treatment option with the potential of curative outcome; all other therapies give you time...
I remember reading 10 years ago about how bone marrow is harvested from either the sternum or the iliac crest. And then there is the image of Dr. T standing over me as he used a rather large (6 inches) corkscrew needle to aspirate my bone marrow to complete disease staging. Transplant therapy was one of several new therapies in clinical trials so I decided to try something off the medical grid and wait for the comparative results.
During the 10 years since diagnosis, BMT has changed names to ASCT (Autologous Stem Cell Transplant). The important distinction is that bone marrow releases stem cells into the blood supply (peripheral blood) in response to cytoreduction of blood components. Your marrow reads your blood. Blood has four main functions 1) oxygenation of tissues, 2) carry nutrients and wastes to or from tissues, 3) immune response to disease and 4) clotting. Hematapoetic stem cells (blood poetry) are the source of the cells that carry out these functions.
Myleoablative (destruction of the bone marrow) chemotherapies destroy all actively growing cells in the body. Because of the myleoablation, patients see their blood counts drop precipitously. Most patients become anemic ( too few red blood cells with their beautiful green hemoglobin bringing oxygen, bringing energy), all patients become neutropenic (unable to fight disease especially of bacterial origin), many require transfusions of platelets so they don't bleed out (night nurse Pam, " now if you blow your nose, do not(!) do it in a mainly way. Dab it, snuff it son, sniffle, but don't blow it!"). In addition to the impact on the blood, their is collateral damage on the alimentary canal (nausea, emesis, pain) an area where research continues to improve the patient experience.
The clinical experience of ASCT follows 3 stages: chemotherapy (6 days with the BEAM protocol), transplantation of hematapoetic stem cells, waiting for the transplanted cells to assume their rightful role, the re-constitution of the blood. Because of the extreme immunocompromise, the hospital is the only setting to play this drama out.
Reading about ASCT how can you not agree with Dr. T?
"Most people don't see the miracle it is".
I remember reading 10 years ago about how bone marrow is harvested from either the sternum or the iliac crest. And then there is the image of Dr. T standing over me as he used a rather large (6 inches) corkscrew needle to aspirate my bone marrow to complete disease staging. Transplant therapy was one of several new therapies in clinical trials so I decided to try something off the medical grid and wait for the comparative results.
During the 10 years since diagnosis, BMT has changed names to ASCT (Autologous Stem Cell Transplant). The important distinction is that bone marrow releases stem cells into the blood supply (peripheral blood) in response to cytoreduction of blood components. Your marrow reads your blood. Blood has four main functions 1) oxygenation of tissues, 2) carry nutrients and wastes to or from tissues, 3) immune response to disease and 4) clotting. Hematapoetic stem cells (blood poetry) are the source of the cells that carry out these functions.
Myleoablative (destruction of the bone marrow) chemotherapies destroy all actively growing cells in the body. Because of the myleoablation, patients see their blood counts drop precipitously. Most patients become anemic ( too few red blood cells with their beautiful green hemoglobin bringing oxygen, bringing energy), all patients become neutropenic (unable to fight disease especially of bacterial origin), many require transfusions of platelets so they don't bleed out (night nurse Pam, " now if you blow your nose, do not(!) do it in a mainly way. Dab it, snuff it son, sniffle, but don't blow it!"). In addition to the impact on the blood, their is collateral damage on the alimentary canal (nausea, emesis, pain) an area where research continues to improve the patient experience.
The clinical experience of ASCT follows 3 stages: chemotherapy (6 days with the BEAM protocol), transplantation of hematapoetic stem cells, waiting for the transplanted cells to assume their rightful role, the re-constitution of the blood. Because of the extreme immunocompromise, the hospital is the only setting to play this drama out.
Reading about ASCT how can you not agree with Dr. T?
"Most people don't see the miracle it is".
Blood poetry
Even now, the great trees are walking. Mountain ridges catch in their gnarled root toes, sending granitic slabs crashing to the valley floor.
Sunday, June 17, 2012
Sea change
"You are officially neutropenic" declared the night nurse Pam as she delivered my morning medicine. "Your neutrophil count has dropped below 1000. Now you cannot leave your room." Had I known that I would have been walking in the halls every night. I am nearing the time described as the nadir, the time when my blood counts show the effects of the high dose therapy. Neutropenic, anemic, low platelets - I dare not scratch myself- are all clear signs to the clinician that the treatment had it's desired effect. Riding the bike today felt like straight uphill. The chart below shows my white blood cell count since admission until yesterday. You can trace the blue line to below one today. The yellow line marks end of chemotherapy. Red shows my 2nd birthday, reinfusion of stem cells. (Black Coal by Kenneth White would make a nice present).
Now we begin to call the stem cells, the same ones transplanted last Tuesday. Nurse Dara pricked me with GCSF as K and Z told me happy father's day over the phone. GCSF is a cellular hormone that stimulates the stem cells to start hematapoesis and begin remaking the immune and circulatory systems. This is where the art of stem cell transplants takes shape. Patients are kept, hopefully, comfortably bored, as their immune systems flicker out. Nurses monitor every four hours any changes in the patient and react. The transplanted stem cells re-ignite the immune system between 5-10 days post transplant.
How a patient feels depends on where and to what severity the body is affected by the therapy. Everyone is different. In the last 24 hours, I have had some powerful nausea induced by the shedding of my gut. Wet sand rubbing sunburned skin. But it passes. And I am subdued, waiting, a seed buried in the frozen earth.
How a patient feels depends on where and to what severity the body is affected by the therapy. Everyone is different. In the last 24 hours, I have had some powerful nausea induced by the shedding of my gut. Wet sand rubbing sunburned skin. But it passes. And I am subdued, waiting, a seed buried in the frozen earth.
Saturday, June 16, 2012
HDT Compass
Ever wonder what the compass of an oncologist might look like? Cancer doctors target actively growing, unregulated cells. When these cells are localized in a discrete area of the body, surgical removal is the method of choice. Blood cancers differ from their solid counterparts by circulating in the blood and lymph supply, occasionally stopping in a lymph node to set up shop.
So how do you stop a malignancy that floats throughout the body? Chemotherapy melts most naive lymphomas. Responses can be strong enough to create a syndrome where lysed cells release their cytoplasmic contents into the blood, dramatically changing blood chemistry. While sensitivity to chemotherapy is an important predictor of outcome, this is not the whole story. Within a given disease, a patient might have multiple cell lines generating the overall clinical condition.
And this is where an oncologists needs a compass. Since the root source of disease is unregulated cellular growth, the compass of an oncologist charts the cell cycle. Cell cycles are four (G1,S,G2,M) in number and describe the essential activity of the cell. A mature cell does its normal work (G1), duplicates its nuclear (DNA) (S), accumulates sufficient metabolites in preparation to divide (G2) and then divides (M). Since cells may be in any one of these four states, oncologists chose chemotherapies that will attack cells in all four stages. Which is why you gotta getta a cocktail, Jack.
The preparatory regime for autologous (self) transplant mixes four cocktails daily for 6 days with the goal of killing any dividing cells. Each chemical targets a cells in a different cycle. In addition to attacking the cancer, the therapy attacks those cells of the body that are actively growing - hair, mouth, intestine, skin cells generating most of the side effects of treatment.
Although the basic approach of chemotherarepy is similiar to when first discovered >50 years ago, newer formulations of cytotoxic drugs and better support to damaged body areas is improving the conditions of patients in treatment.
Friday, June 15, 2012
Day + 3
Friday afternooon. The great ship moves slowly through the rising afternoon breeze. Wind from the north, tomorrow gonna be hot. Natalie, the nurse just made her pm round. D shared the story of one (guess!) of our children saying," I better get something big for going through this". Her wise response is that all of us are going through this, all of us feel the effects of transplant therapy. Day +3 means that we are now 10 days into it. This huge ship turns slowly even with the afternoon breeze. Holding onto the railing, I lean out into the wind where the day blows my scalp dry. From my balcony, I can see people walking in the sun. Briefly, I feel the hot afternoon sun on my face.
Wednesday, June 13, 2012
Day Zero
Tuesday was THE TRANSPLANT! What an amazing procedure. Everything we've been learning and deciding and waiting for has led to this moment. The anticipation has been sometimes agonizing, so it's no wonder there was intensity and excitement in the air.
Thank goodness it started with calming meds. This picture shows Joseph in his Ativan state, a drug that sedates the senses. Aaaaahhhh.
Then, the vitals were monitored until Dr. Abeti gave the thumbs up to begin. Rick, the keeper of the cells, defrosted the first bag from 300 degrees below F, to 37 degrees F. Then the nurses infused them into Joseph. There was a sense of urgency throughout the infusion because as the cells reach body temperature, their viability decreases. Four bags and an hour later, the transplant was finished. The only sensation Joseph had was a tickling in his tonsils, a direct effect of the preservative in which the stem cells are carried. Some patients cough and break out in hives, or their airway starts to close. But Joseph had only a scratchy throat that was relieved with popsicles.
Because the preservative has a base of sulfur, there came a distinct smell that filled the room, and will continue to seep from Joseph for the next few days. The doctor said that it's a garlic odor, but that's not what my nose detects. It's more like a pungent, sweet, over-ripe fruit, composty aroma. Not something you'd want to bottle and wear later.
Looks like a salmon steak.
Zoe sewed the pillow case, by the way. A touch of home away from home.
Happy Birthday Joseph!
Well-done!
Love Altars
The kids have been missing Joseph something fierce. So, they've created sacred spots in our garden where they place flowers, rocks and seeds along with lighting incense. Yesterday they said their well-wishes for Joseph's health and quick return. The whole process allows them to have some control over their feelings and soothes their worries.
Tuesday, June 12, 2012
What do you see?
A swirling dervish surrounded with love.
A touch of light, day beginning.
Be it ever so.
Monday, June 11, 2012
Interlude
(And in the evening I lie like a ship
With lights out, just at the right distance
From reality)
The seed kicking inside the earth.
Grey haze rising from the valley floor, the horizon smeared away.
The light moves west. Unfinished, the day pulls the breeze around its shoulders and goes for a walk. Birds slide out of the way.
and the trees lift and toss the great ship into the night air.
Sunday
 |
| Day Minus 2 was yesterday. He rode an hour on the bike and did some Tai Chi. |
 |
He spotted his favorite hike, Pyramid Peak from his window.
Our reflection at night.....
Joseph requested walking privileges within the BMTU. The doc approved this because his neutrophil counts are high enough. He had to go after 9:00 PM, and get suited up. But he was Giddy with the prospect of freedom. After 5 days of being in a small room, this was a gift. We walked and walked the short halls and had the nurses tired out from watching.
We met a man named Claude who was also given pacing privileges. Interesting to watch two masked men having a casual conversation about their cancer treatments. I'll show you my port if you show me yours.
Joseph's room. Visitors step into the ante room to scrub, gown up, and then pass through his door.
Sunday, June 10, 2012
Day Minus 2
Joseph is in great spirits today. Noticing a man on the street walking in his bright red crocks, and the crows in a nearby sycamore tree. As he stares out the window, he asks me, "What do you notice that's different from yesterday?" I look and see nothing out of the ordinary. He points out that the parking lot lines have all been repainted. A time to reflect. To watch. To wait. And see.
Saturday, June 9, 2012
Settling In
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