Steve got home last evening from the hospital. He's fatigued, and (so am I BTW), but doing much better than a week ago. The plan is to continue with daily outpatient IV antibiotics through Sunday.
He's almost done needing stuff pumped into him -- yippee!
There is no describing the elation and relief we feel. I can finally stop holding my breath and come up for some fresh air. And for Steve, well, he's not sappy, as you know, but now that he's finally over this trauma, it feels like the first day of the rest of his life.
His blood counts are rising but he will probably need some blood during the next week. He's received about 30 units of red blood cells and 50 units of platelets since all this started last November. Thank you, thank you blood donors. Without you, this aggressive treatment would never be possible. You are the unsung heroes of leukemia treatment.
We are looking forward to mowing the knee-high lawn. And yesterday I bought myself a present -- a beautiful ornamental Japanese maple tree (shrub), that I will plant today in the perennial garden. It is a reminder of the beautiful sublime gardens we saw last summer in Japan -- a place we want to visit again. And the sake is much better there than here.
For now, we are enjoying this blissful morning in Maine and planning some camping trips to places in Maine. Chuck Lakin is retrofitting the mini van with a bed and a kitchen. We also bought a special tent made to fit over the back of the Honda Odyssey van that we just bought. Our plan is to drive across the country in the fall, something I have never done before. This trip is dubbed 'Gina's Odyssey.'
Thursday, May 30, 2013
Tuesday, May 28, 2013
It's out! The long slithering forked tongue snake known lovingly as "my Hickman" was removed yesterday in a relatively painless procedure. Widely praised by every nurse that ever had to use it, I don't miss it. Even better, I didn't spike a fever last night for the first time in almost a week. I was tempted to ask the surgeon if I could take my Hickman home in a jar but thought better of it. Gina took a picture of it so I'll always be able to remember the guy.
To make matters even better I scored a trifecta yesterday....my white blood cell count rose significantly and my platelets held their own instead of dropping. So, with no fever and rising white blood counts, I'm going to press to get out of the hospital today. I'm working on my speech now.
To make matters even better I scored a trifecta yesterday....my white blood cell count rose significantly and my platelets held their own instead of dropping. So, with no fever and rising white blood counts, I'm going to press to get out of the hospital today. I'm working on my speech now.
Monday, May 27, 2013
This will be the day I get my line removed. It's a tricky situation because my body hasn't begun producing platelets yet. So they'll pump me up with platelets before the removal. The incisions are small and the tubes are supposed to pull out easily.
The doctors believe it is the source of the infection. Apparently staph bacteria like to glom onto plastic and other foreign stuff in your body and it is hard to get rid of them without removing the plastic. The past four days in the hospital have all been the same. I wake up with a headache and my temperature hangs around 99-100. In the evening I start to feel worse and my temperature rises above 101. By midnight, my fever breaks and I feel good. The antibiotics seem be holding the infection at bay but they haven't gotten rid of it.
Last night my chest cavity started to fill with fluid due to the immense amount of intravenous fluids they've pumped in to me over past four days. This makes your breathing very shallow and your heart starts to race. The nurse called my doctor and they gave me a drug called Lasix that clears the fluid. Feels a little like drowning...Not a good experience over-all! My lungs still don't feel right this morning.
My white and red blood cell counts are disappointingly low, but my neutrophil count is 180 today. This is good news and the first sign that the bone marrow is starting to ramp-up its cell production.
Gina and I are going to watch the French Open this morning and try to relax. The next few days are important. We'll see.
I know this all sounds depressing. I'm optimistic but worried.
The doctors believe it is the source of the infection. Apparently staph bacteria like to glom onto plastic and other foreign stuff in your body and it is hard to get rid of them without removing the plastic. The past four days in the hospital have all been the same. I wake up with a headache and my temperature hangs around 99-100. In the evening I start to feel worse and my temperature rises above 101. By midnight, my fever breaks and I feel good. The antibiotics seem be holding the infection at bay but they haven't gotten rid of it.
Last night my chest cavity started to fill with fluid due to the immense amount of intravenous fluids they've pumped in to me over past four days. This makes your breathing very shallow and your heart starts to race. The nurse called my doctor and they gave me a drug called Lasix that clears the fluid. Feels a little like drowning...Not a good experience over-all! My lungs still don't feel right this morning.
My white and red blood cell counts are disappointingly low, but my neutrophil count is 180 today. This is good news and the first sign that the bone marrow is starting to ramp-up its cell production.
Gina and I are going to watch the French Open this morning and try to relax. The next few days are important. We'll see.
I know this all sounds depressing. I'm optimistic but worried.
Sunday, May 26, 2013
Once again he spiked a fever this evening. Now that it's been 72 hours since the antibiotic started , maybe this is the last fever.
He is eating better today, but he has some fluid in his lungs and is short of breath with all the IV fluids he's received. Now he'll have to get a drug to get rid of the extra fluid.
I can't wait until all of this -- infection, fluid, low blood counts, weariness -- has passed.
He is eating better today, but he has some fluid in his lungs and is short of breath with all the IV fluids he's received. Now he'll have to get a drug to get rid of the extra fluid.
I can't wait until all of this -- infection, fluid, low blood counts, weariness -- has passed.
Saturday, May 25, 2013
"Your temperature is 101.4," the nurse's aid said to Steve.
"I just drank some hot tea," he said.
"Ok -- I'll check it under your arm -- still 101.4,"she said.
"I splashed some tea under there too," he said, deadpan, eyes shut, feeling miserable.
There you have it -- still feverish but still able to crack a joke. The doctor told him to expect fevers at night for a few days. I guess this is some small comfort to this worn out guy.
On the way home from the hospital I got stopped by a cop.
"Do you know why I stopped you?"
"No," which was true -- I didn't think I was speeding, but apparently I was.
"Where are you going?" he asked me.
"I'm coming from the hospital. My husband has leukemia. I guess I was distracted."
He blanched and asked to check my license. In two minutes he was back, practically apologizing for pulling me over.
Another shameless use of what we call 'playing the leukemia card.' This ought to give Steve a chuckle.
"I just drank some hot tea," he said.
"Ok -- I'll check it under your arm -- still 101.4,"she said.
"I splashed some tea under there too," he said, deadpan, eyes shut, feeling miserable.
There you have it -- still feverish but still able to crack a joke. The doctor told him to expect fevers at night for a few days. I guess this is some small comfort to this worn out guy.
On the way home from the hospital I got stopped by a cop.
"Do you know why I stopped you?"
"No," which was true -- I didn't think I was speeding, but apparently I was.
"Where are you going?" he asked me.
"I'm coming from the hospital. My husband has leukemia. I guess I was distracted."
He blanched and asked to check my license. In two minutes he was back, practically apologizing for pulling me over.
Another shameless use of what we call 'playing the leukemia card.' This ought to give Steve a chuckle.
Friday, May 24, 2013
much better today!
The patience of Job is required for this job. I may be in the hospital for a while. They won't let me go until the fevers are gone....
The good news is that the antibiotics appear to have knocked the crap out of the bacteria. The difference between how I feel today and how I felt yesterday is amazing.
The infectious disease doctor said it's some type of Staph infection, and it probably started in my central line. They probably will need to pull it out. It has served me well since November and anyway soon I won't be needing all this stuff pumped into me.
Thursday, May 23, 2013
Hopefully this is the last bump in the road
Despite our best efforts at keeping Steve out of the hospital, the blood cultures that were drawn yesterday showed bacteria in his blood. This is a serious situation for anyone, never mind Steve with no neutrophils, so he had to be admitted to the hospital this afternoon.
He still feels very sick and is running a fever. They were able to identify the type of bacteria that's growing, and have now changed his antibiotics to target the specific bacteria, as well as giving him another antibiotic to kill any other bacteria that has yet to be revealed.
This is a low point but hopefully things will turn around soon. As if he hasn't been through enough!
He still feels very sick and is running a fever. They were able to identify the type of bacteria that's growing, and have now changed his antibiotics to target the specific bacteria, as well as giving him another antibiotic to kill any other bacteria that has yet to be revealed.
This is a low point but hopefully things will turn around soon. As if he hasn't been through enough!
Wednesday, May 22, 2013
Seeking calm at home in Belgrade
Can we have a group hand-wring?
Not unexpectedly, this third week post-chemo is a doozy.
Steve has been running a fever off and on since yesterday but is loathe to go back into the hospital. He not only has a fever but he feels like shit -- kind of like a bad case of the flu.
As a compromise, his doctor said she'd give him IV antibiotics as an outpatient everyday, unless he spikes another fever, and then he has to go to the hospital. With zero neutrophils, he is in a precarious situation, which she doesn't want to take any chances with.
"We have too much invested in getting you better to mess it up now," she said.
Amen, sister.
He's home now, in bed sleeping, and I am keeping an eye on him, wringing my hands.
Not unexpectedly, this third week post-chemo is a doozy.
Steve has been running a fever off and on since yesterday but is loathe to go back into the hospital. He not only has a fever but he feels like shit -- kind of like a bad case of the flu.
As a compromise, his doctor said she'd give him IV antibiotics as an outpatient everyday, unless he spikes another fever, and then he has to go to the hospital. With zero neutrophils, he is in a precarious situation, which she doesn't want to take any chances with.
"We have too much invested in getting you better to mess it up now," she said.
Amen, sister.
He's home now, in bed sleeping, and I am keeping an eye on him, wringing my hands.
Thursday, May 16, 2013
From the NYT
I read this blog today on the NYT -- glad we have this behind us! Steve is doing well, recovering better than he did after his previous chemo treatments. In another couple of weeks he'll be out the woods.
Seeking Calm on the Cancer Ward
By MIKKAEL A. SEKERES, M.D.
Darren Hauck for The New York TimesOn the shores of Lake Michigan.- GOOGLE+
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When people choose to have their leukemia treated aggressively, it’s a big commitment, more so than for almost any other cancer.
With this therapy — three days of the drug daunorubicin, which comes in a reddish color so distinctive that one of my patients, a former chemist, used it in his professional life as a dye for plastics, and seven days of the drug cytarabine, which is infused continuously over 168 hours — we offer them the chance to be cured of a disease moving like wildfire with a stiff breeze behind it at the height of drought.
The offer can be seen as a Faustian bargain, though. In return comes the very real possibility of dying from our treatment, along with immersion into a kind of purgatory of a hospital stay lasting four to six weeks. We joke with our patients that we love boring — it is, in fact, a medical ideal that our patients complain of nothing more than ennui on a daily basis. But the psychological mettle it takes to endure this experience is remarkable, and there’s little that can prepare a person for it.
We make our rounds as a group — nurses, physician assistants, residents, a fellow, a pharmacist, a case manager, me and occasionally additional observers. It can be quite absurd, really, this thundering herd walking slowly down the hallway of the leukemia unit, stopping at each doorway. A few weeks ago, when I was attending on the leukemia service, we came to our eighth patient of 25, a 72-year-old man whose leukemia persisted despite our first round of chemotherapy, so we gave him more. It was now his 36th day in the hospital, and his blood counts showed no signs of recovery, a wasteland of emptiness.
A few of us walked into his room, where his wife sat in a chair by his bed, reading. She looked up and gave us a half-smirk as we glanced over at him. His sheets were pulled completely over his head and then tucked underneath it, creating the image of a starched white cocoon.
“Don’t mind him. He always sleeps like that,” she said. “On the ship, the couch where he rested was directly under a vent, and this was the only way he could ever grab any shut-eye.” He stirred and pulled the sheets down, squinting against the room’s lights.
He was captain of a barge that traversed the Great Lakes, hauling iron ore for the steel mills, back when steel mills were still open and the Steinbrenners controlled a lot of this commerce. He steered these massive vessels from the back (“aft,” he liked to remind us landlubbers), staring out across the two football fields of their length.
“He’d be gone from March through October,” his wife said. “I was one of the lake widows!” She laughed, but stopped herself quickly, realizing the nickname threatened to become a reality. “But I knew what I was getting myself into. His father was a ship captain, too, so my mother-in-law sat me down before our wedding day to prepare me.”
I asked what it was like to go eight months without seeing each other.
“I missed her, but we’d meet up every month or two,” my patient chimed in, now awake.
“I would track the ship,” his wife added. “I knew what day they would set out from Duluth and approximately when they’d be getting into Chicago. So I’d pile the kids into the car and we’d go see him. We’d have 24 hours as a family, but if we were lucky, and there was a maintenance issue on the ship, sometimes we’d get 36.” She smiled at the memory. “But mostly, there was a lot of waiting.”
My patient said: “It got better when the kids went off to college. Then she could join me on the ship for two weeks at a time.” He gestured to a photograph on his wall, of the sun rising over a body of water in a cloudless sky. “It was beautiful, really, seeing that every day.”
“Beautiful,” his wife echoed. Everyone in the room was still, thinking about the expanse of water, the miles he had already covered and what lay ahead.
“So, I guess there’s no change in my blood counts?” my patient asked.
“Nope, not yet,” I answered. “But they could improve any day now.”
“It’s O.K.,” he said. “We’re not in a hurry. We’ll see you tomorrow.”
His wife waved goodbye and went back to her book as we left his room, the waters calm, the air without breeze.
Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic.
Monday, May 6, 2013
He's out
The last round of chemo ended this morning and now Steve's home and feeling pretty well.
It's a great feeling to get this behind us.
It's a great feeling to get this behind us.
Wednesday, May 1, 2013
100,000 on the nose
Steve started his last round of chemo this evening. He has been feeling so well that it's hard to go back to this again. On the other hand, this three week delay in treatment gave him the chance to feel stronger and more like himself. There's no going back for chemo after this recovery -- he can just get better and get back to living his life.
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