Recognized worldwide as one of the best in his field of medicine, Dr. Sagar Lonial, Jimmy's doctor, accepts a prestigious award he received last month.
This morning our good friend, Cathy Bright emailed us an article published in the January 30, 2008, issue of The New Yorker magazine, about Kathy Giusti and the Multiple Myeloma Research Consortium. Although a long article, it's fascinating. You can read it at
http://www.newyorker.com/reporting/2008/01/28/080128fa_fact_groopman
Thursday, January 31, 2008
Superman
Late yesterday afternoon, Jamey came to the hospital to help us, and we packed up and moved back to the apartment. Moving into the Rollins Suite was also an option, but Jimmy wouldn't hear of it, and as usual, got his way. Since we're only a five minute drive from the hospital, and engraftment has begun, Dr. Waller thought it was OK, but the caregiver (me) was in a state of acute anxiety.
We've come so far, and have been in this thing for such a long time, and we don't need to blow it now. We were not in the hospital two and a half weeks. In spite of my being such a Nervous Nelly, I slept hard for ten hours last night, the first good night's sleep I've had in ages.
2PM We're at the infusion center where Jimmy is starting to get various fluids and substances his body is running short on; just the potassium takes four hours to administer. We'll be back here again Saturday morning doing the same. Jimmy says he feels like he's been run over by a Mack truck, but he's doing amazingly well, especially when you consider that it's only Day 13 of transplant.
Wednesday, January 30, 2008
4.9!!!!
Neupogen shots the last two days probably helped, but Jimmy's WBC has jumped to an incredible 4.9 since yesterday! Although a return to a normal immune system takes months and months, it is a tremendous relief that his body is rebounding so quickly. His platelets are still low, only 6000, but those are typically slower to come back, and Jimmy is getting a transfusion of them right now. It's expected that he will need additional blood and platelets over the next week or so, but in general, he's doing very, very well, and now he's pushing to move back to the apartment.
7E
The staff on 7E is remarkable. Their technical training is, of course, top notch, but it's their attitude about their work that is so touching: they stay very busy, often working twelve hour shifts, but their kindness and caring and cheerful demeanor are constant.
One of our nurses, Jessica Thomas (who is so precious we wish we could pack her up and take her with us) was telling me that they sometimes become quite attached to their patients, many of whom spend an extended period of time on 7E. She told me about one young woman, a twenty-eight year old named Katy, who spent several months on this floor. While she was here, Katy's boyfriend asked her to marry him, and the staff, with her doctor's permission, gave her a wedding.
They had a bridal shower for her, and got her a wedding gown and veil. On her wedding day, they rolled her in a wheelchair down to the little chapel on the second floor. It was filled with people, and the bride, the groom, the minister who married them, and the entire congregation all wore masks. They took lots of photographs, and Jessica said that it was a beautiful service.
Tuesday, January 29, 2008
We're engrafting!
Jimmy's WBC is up to 1.6 today, and he looks and feels better than he has in days. I'm almost afraid to say it, but I believe the worst is over. When Jimmy's fever was so high, we didn't do much walking; we tried, but he was terribly weak. This morning, Dr. Waller told Jimmy he wanted to see him out walking the halls. "Let's see," he said, quickly figuring on the blackboard, " you've been in the hospital for 14 days, and at 21 laps a day, you owe me 194 laps." He was kidding, of course. I think.
Monday, January 28, 2008
Day 10
Jimmy's fever went up during the night, but not too badly, only 101, and it's back to normal this morning. His hair started falling out again, so we went ahead and shaved it all off. It wasn't a big deal this time. His skin is peeling like he's had a bad sunburn, even his ears and his scalp. He is one huge flake, from head to toe.
His mouth is still sore, and he has no appetite, but he's trying very hard to eat a little solid food. His diet for the last two weeks has been almost entirely liquids, and I'm glad we fattened him up some before we started all this.
His mouth is still sore, and he has no appetite, but he's trying very hard to eat a little solid food. His diet for the last two weeks has been almost entirely liquids, and I'm glad we fattened him up some before we started all this.
Sunday, January 27, 2008
Bahama Dreamin'
Yesterday, after Jimmy's fever broke, Jamey came to sit with him so that I could go to the apartment and change clothes. While Jimmy was so sick, I had hardly left the room except to go across the hall for ice, and although it was a cold and dreary Atlanta day, it felt good to get out of the hospital for a while, to be outside and get some fresh air.
It's lovely to sink into a bathtub full of hot water, to lie back and close your eyes and drift away, to a shiny blue day in the Abacos. You picture yourself on a reef at the north end of Great Guana Cay, not moving, just floating face down on the surface of the warm tropical waters; the only sounds you hear are your own slow breath through the snorkel and the rhythmic roll of the ocean.
A school of yellowtail snapper threads its way through purple coral fans that sway in the cooler currents that flow beneath you, and a sea turtle glides over an outcropping of staghorn coral. Brazen sergeant majors flaunt their black and gold stripes, dipping and darting past a shy Nassau grouper, camouflaged under a ledge. Two pairs, then three, of long waving antennae protrude from a crevice: lobsters; they're out of season, and know that they're safe for now.
Sea biscuits and sand dollars are scattered across a grassy spit, alongside conch shells and one lone spiny starfish. Large turquoise parrotfish lazily graze on the coral close by, their crunching audible under the water.
When I open my eyes, the water is cold, and and so is reality. But we'll go back. Before we know it, we'll be in the sunshine, listening to the steel drums, swimming in the Sea of Abaco again.
Sea biscuits and sand dollars are scattered across a grassy spit, alongside conch shells and one lone spiny starfish. Large turquoise parrotfish lazily graze on the coral close by, their crunching audible under the water.
When I open my eyes, the water is cold, and and so is reality. But we'll go back. Before we know it, we'll be in the sunshine, listening to the steel drums, swimming in the Sea of Abaco again.
Things are looking up
It appears that we have turned a corner. Jimmy's fever has not returned, and he feels much, much better. At .9, his white cell counts are on the way up. If he continues to improve at this rate, we'll be able to move back to the apartment sooner rather than later.
Saturday, January 26, 2008
7PM Jimmy had hung on to a significant fever for the last several days, with its staying high all last night, and topping out at 103. It held steady at 102 all morning, then around noon, he broke into a drenching sweat, and the fever broke. He has slept for much of the afternoon, and his temperature is still normal.
As often happens, one problem gave rise to another: because of the fever, Jimmy was spending more time in bed, and that aggravated his back. To alleviate the back pain, he had to take more pain medication, which made him sleepier and dopier, and a vicious cycle was starting.
Dr. Waller requested that Jimmy's mattress be swapped for one that gives his back more support, and that has helped a lot. If Jimmy is over these fevers now, we can get back to walking, and his back will feel better, and we can get on with the program.
As often happens, one problem gave rise to another: because of the fever, Jimmy was spending more time in bed, and that aggravated his back. To alleviate the back pain, he had to take more pain medication, which made him sleepier and dopier, and a vicious cycle was starting.
Dr. Waller requested that Jimmy's mattress be swapped for one that gives his back more support, and that has helped a lot. If Jimmy is over these fevers now, we can get back to walking, and his back will feel better, and we can get on with the program.
Friday, January 25, 2008
From our window
Day 7
7:30 AM The last twenty-four hours have been difficult, and the primary culprit has been this persistent fever. It went to 104 during the night, and we've gotten it down again to 101. It has been rollercoastering like this since yesterday afternoon; it spikes up, and he is given Tylenol, and at one point last night we put bags of ice under his arms and wiped him off with a cool cloth. It helps, but he remains febrile. There's no cause for alarm, but it is miserable for Jimmy, and unnerving for this inexperienced caregiver.
He has also developed some sore places in his mouth: not too bad, but enough to make him talk like he has a mouthful of marbles. I told him that he sounds like Lou Holtz on ESPN.
6PM Jimmy rallied some this morning, and managed to walk two laps, falling far short of the prescribed twenty-one. His fever has been inching up all afternoon, but we're hoping we won't have a repeat of last night. Cultures are still not showing anything; a CT scan was done on his chest yesterday, and another one on his sinuses this afternoon, to make sure nothing is being overlooked.
Today his platelets were 11,000, so he got a bag of those; his hematocrit was 24, so he got two units of blood; his white blood cells are still gone, so he 's getting an arsenal of antibiotics. All the i's are being dotted, and all the t's are being crossed, and it is reassuring to know that he is being so well cared for.
He has also developed some sore places in his mouth: not too bad, but enough to make him talk like he has a mouthful of marbles. I told him that he sounds like Lou Holtz on ESPN.
6PM Jimmy rallied some this morning, and managed to walk two laps, falling far short of the prescribed twenty-one. His fever has been inching up all afternoon, but we're hoping we won't have a repeat of last night. Cultures are still not showing anything; a CT scan was done on his chest yesterday, and another one on his sinuses this afternoon, to make sure nothing is being overlooked.
Today his platelets were 11,000, so he got a bag of those; his hematocrit was 24, so he got two units of blood; his white blood cells are still gone, so he 's getting an arsenal of antibiotics. All the i's are being dotted, and all the t's are being crossed, and it is reassuring to know that he is being so well cared for.
Thursday, January 24, 2008
A Celebration
After a patient has a transplant, all the nurses have a little "birthday party" for him, in celebration of the arrival of the new stem cells, and for the patient's bright new start in life. They all come into his room and sing, and present him with a hat signed by the staff, and put balloons on the door.
Jimmy's fever is around 102 degrees today, and because nothing has shown up in the cultures, they finally let him have some Tylenol. Tylenol is avoided in transplant situations, as it can mask infection, but Jimmy can be very persistent, and eventually he wore them down.
He's getting platelets today, but his hematocrit is still high enough that he doesn't need more blood yet. We have switched from Ativan to Compazine for nausea; it appears to be more effective, and he's not as zonked. Feeling rotten is endemic to this stage of the process, so we'll get through it, knowing that Jimmy will be better soon. The transplant team is in support mode as we wait for the stem cells to engraft, which may start in another week.
Wednesday, January 23, 2008
What year is this?
10PM Are we caught in a time warp, mired in a day that goes on and on and on forever? Most days float by, not unpleasantly, in that strange hospital-time sort of way, but this one has been interminable. Jimmy has felt awful: completely wiped out, with intermittent bouts of nausea, and his Kepivance rash is itchy, and his fever has returned, although not as high as it was last week. It's most likely coming from having no white blood cells, rather than infection.
"What day is it?" Jimmy has asked, more than once, waking from a nap.
"It's Wednesday."
"STILL?" It's been Wednesday for days!"
We haven't walked our mile today, although we did about eight laps, and in his condition, that took a Herculean effort. But SLOW...you don't know slow. He could hardly get one foot in front of the other, and I was having to step-step-shuffle-ball-chain the whole way, in an attempt to slow down my pace.
"What day is it?" Jimmy has asked, more than once, waking from a nap.
"It's Wednesday."
"STILL?" It's been Wednesday for days!"
We haven't walked our mile today, although we did about eight laps, and in his condition, that took a Herculean effort. But SLOW...you don't know slow. He could hardly get one foot in front of the other, and I was having to step-step-shuffle-ball-chain the whole way, in an attempt to slow down my pace.
Dr. Waller
Dr. Edmund Waller is our attending physician this week. Professor of hematology and oncology here at Emory, he is Program Director of Bone Marrow and Stem Cell Transplant. He went to medical school at Cornell, and did his internship and residency at Stanford, and is a very fine doctor. Below, Dr. Waller and Jimmy confer. The second photo below is of Jimmy with Dr. Pakkala, a Fellow at Emory, and another of Jimmy's excellent physicians
Day 5
It has been five days now since the transplant, eight days in the hospital, and exactly ten months since Jimmy's vertebra collapsed. Our pre-myeloma world seems a lifetime away, and that the unthinkable has become commonplace says much about the resilience and adaptability of human nature.
Jimmy was given intravenous Ativan this morning for nausea, and has slept a lot. He says that he feels terribly weak. His white blood count is below .3, which means it is virtually undetectable; a healthy person has 5000-10,000 white cells per microliter of blood, and Jimmy has less than 300. His hematocrit is also dropping, and the transfusion of blood and platelets that he will, in all probability, be getting tomorrow should boost him up a bit.
Jimmy was given intravenous Ativan this morning for nausea, and has slept a lot. He says that he feels terribly weak. His white blood count is below .3, which means it is virtually undetectable; a healthy person has 5000-10,000 white cells per microliter of blood, and Jimmy has less than 300. His hematocrit is also dropping, and the transfusion of blood and platelets that he will, in all probability, be getting tomorrow should boost him up a bit.
Tuesday, January 22, 2008
Day 4, and all is well
At .3, white blood counts are close to bottoming out, but Jimmy continues to do very well. The Kepivance has made him break out in a rash, and his skin is bright red all over, like he has a bad sunburn, but the good news, the GREAT news, is that it looks like he is going to dodge the oral and esophageal mucositis bullet, thanks to the Kepivance. The benefits from it are huge, compared to minor downsides, like skin rashes and cotton mouth.
Up until about two years ago, when Kepivance first came out, mouth and throat ulcers were a devastating side effect of high dose chemotherapy, a real nightmare. Patients who developed them often had to use a morphine pump just to swallow, and the nurses say their mouths were like raw hamburger. We are so thankful that this miraculous drug is available now, to save Jimmy from that awful experience. The AMD3100 that enabled us to harvest enough stem cells for the transplant was another little miracle.
Although there are blessedly no sores, the lining of Jimmy's mouth is very dry and thick, and he has no appetite, and is eating very little. Everyone says this is normal, and not to worry about it, but the inclination to nag has been overpowering at times, and I'm having to bite my tongue to keep from driving him and myself crazy. We have compromised on a couple of cans of Ensure, and juice.
The next few weeks are just a waiting game: barring any complications, we'll stay in this room and keep Jimmy safe from infection, and let those 4.6 million stem cells do their thing.
Up until about two years ago, when Kepivance first came out, mouth and throat ulcers were a devastating side effect of high dose chemotherapy, a real nightmare. Patients who developed them often had to use a morphine pump just to swallow, and the nurses say their mouths were like raw hamburger. We are so thankful that this miraculous drug is available now, to save Jimmy from that awful experience. The AMD3100 that enabled us to harvest enough stem cells for the transplant was another little miracle.
Although there are blessedly no sores, the lining of Jimmy's mouth is very dry and thick, and he has no appetite, and is eating very little. Everyone says this is normal, and not to worry about it, but the inclination to nag has been overpowering at times, and I'm having to bite my tongue to keep from driving him and myself crazy. We have compromised on a couple of cans of Ensure, and juice.
The next few weeks are just a waiting game: barring any complications, we'll stay in this room and keep Jimmy safe from infection, and let those 4.6 million stem cells do their thing.
Monday, January 21, 2008
Day 3
Jimmy's blood counts are continuing to fall. His white blood count is down to .7 today, and in a day or two will be close to zero, which is expected. He's very tired, and is experiencing some nausea, but Dr. Waller is pleased with his progress.
Sunday, January 20, 2008
Day 2
Jimmy and Jamey, getting in some laps. Isn't Jimmy a vision?
**********
**********
7E is the transplant wing. It is closed off from the rest of the hospital, and the doors are locked at all times. There are special air filters and fans to reduce germs and bacteria and contaminants, and the medical personnel wear masks. Visitors are kept to a minimum, and they have to wear masks in the patients' rooms. Children and plants and flowers and perfumes and, of course, anyone with any sign of infection are not allowed on the floor. Jimmy and I don't have to wear masks in our room, but Jimmy has to put his on if he goes out in the hall.
Jimmy still feels pretty good, but no matter how badly you feel, the last thing they want you to do is lie in bed all day. They want all the transplant patients to walk at least a mile, every day. The hall is a large circle, and twenty-one laps make a mile, so all day long there are masked patients walking the hall, often pulling their IV poles. Jimmy told me that he had periods of sleeplessness last night, so at 4AM, he got up and did seven laps.
This is such a petty complaint, but the stem cells that were transplanted back into Jimmy had been frozen and treated with a preservative, DMSO, and had an odor. Ever since the transplant, he has smelled like he was steeped in garlic for a month: he positively reeks. This lovely aroma will dissipate eventually, but in the meantime, I've thought about wearing a mask in our room out of self defense.
Saturday, January 19, 2008
Waiting For Engraftment
Jimmy has had a good day; he still has a fever, but it's not as high. His blood counts are low, so he had to get two more units of blood this afternoon, and that made him feel better.
As we understand it, the brunt of the side effects of the chemo doesn't really hit until after Day 4, when the blood counts are the lowest. (Yesterday, the day of the transplant, is considered Day 0, so today is Day 1, and tomorrow Day 2, etc.) Symptoms can range from mild to severe, and everybody experiences them differently, and not all patients experience all side effects.
The next phase of the transplant process is called the waiting for engraftment period, and all the blood counts will continue to be low, increasing the danger of anemia, bleeding, and infection. In this phase, the stem cells circulate through the bloodstream, and relocate in the bone morrow cavities. Until the stem cells engraft in the cavities, the bone marrow cannot produce its own blood cells, so Jimmy will be closely monitored, and will be given blood and platelets as needed, as well as oral antibiotics to prevent infection. The waiting for engraftment period generally takes two to four weeks.
And yes, I AM going a little stir crazy.
As we understand it, the brunt of the side effects of the chemo doesn't really hit until after Day 4, when the blood counts are the lowest. (Yesterday, the day of the transplant, is considered Day 0, so today is Day 1, and tomorrow Day 2, etc.) Symptoms can range from mild to severe, and everybody experiences them differently, and not all patients experience all side effects.
The next phase of the transplant process is called the waiting for engraftment period, and all the blood counts will continue to be low, increasing the danger of anemia, bleeding, and infection. In this phase, the stem cells circulate through the bloodstream, and relocate in the bone morrow cavities. Until the stem cells engraft in the cavities, the bone marrow cannot produce its own blood cells, so Jimmy will be closely monitored, and will be given blood and platelets as needed, as well as oral antibiotics to prevent infection. The waiting for engraftment period generally takes two to four weeks.
And yes, I AM going a little stir crazy.
The War
* * * * * * Jimmy and nurse Jessica Thomas * * * * * * *
5AM It's hard to sleep in hospitals, with the constant activity, and people in and out of the room all night long; they're quiet and considerate, but still...
This stem cell transplant really is like a war. It IS a war. Jimmy is the country that has been invaded and taken over by the enemy, the evil Myeloma. Dr. Lonial is General George Patton, the military strategist ,who is going to orchestrate the attack, wipe the Myeloma out, and restore the country to its rightful inhabitants.
The first wave of the attack is the heavy chemotherapy, the Melphalan, the B-52's that bomb everything; it destroys the Myeloma, but there is also collateral damage: Jimmy's hair follicles, the lining of the mouth and gastrointestinal tract, the bone marrow. The next day, the Melphalan bombers come back in a second wave, and attack again.
On the third day, General Lonial sends in the special forces, the Velcade, paratroopers who come in to mop up any surviving Myeloma. The Velcade is a molecular chemotherapy, sort of like a Smart Bomb, that targets only the myeloma cells; additionally, it destroys the myeloma's DNA, to keep it from mutating and coming back.
With the Myeloma now destroyed, the war-ravaged country needs outside help, so General Lonial sends in the good guys, the pristine, healthy Stem Cells, who go about repopulating the country, and restoring it to its former health and glory. Another part that needs to be mentioned is that of the Resistance: Jimmy's fever. Dr. Lonial thinks that some patients, like Jimmy, perceive the enzymes created by the dying cancer cells, and attack them with fever. Like one of our favorite nurses, Jessica Thomas, was telling us last night, "Fever is your friend."
Dr. Lonial is a brilliant medical scientist and a great general, and he's right on the edge of curing multiple myeloma, and winning this war.
Friday, January 18, 2008
Our excellent nurse, Lauren Singletary, administered the five bags of stem cells that were re-introduced into Jimmy's blood this afternoon: 4.6 million in all. He continues to have a fever of unknown origin, but Tylenol is making him feel better. Between the transplant and the fever and the bone marrow biopsy this morning, he's had a pretty rough day, but his courage and his wonderful attitide and his good humor are unfailing. He is one tough cookie.
Thursday, January 17, 2008
Jimmy spiked a fever of over 103 degrees late this afternoon, and has been started on antibiotics as a precaution, while they do blood and urine cultures to see if there is any infection. He has been lethargic all day, and has been sleeping a lot, but other than complaining of a mild headache, seems OK.
Wednesday, January 16, 2008
Jimmy's second infusion of melphalan today was without incident, and although he's sleeping a lot, and has a poor appetite, no serious reactions have set in yet. We have been assured that they will in a few days, but all in all, Jimmy is doing very well. His hematocrit dropped below 27 again, so he is supposed to get two more units of blood today. Cross-typing has to be re-done if it's over 72 hours since your last transfusion, but after waiting all afternoon for the lab to send it up, Jimmy told our sweet nurse Heather, "Dracula could have gotten blood faster than this."
Maybe it's because it's flu season, but the hospital is full, and when we checked in yesterday, the only available room was a tiny cubicle that faced a concrete wall. Today, a much nicer room across the hall was vacated, so we happily changed locations.
The first thing we saw when we looked out our new window was a view of the Emory campus, and a glimpse of the Atlanta skyline, and SNOW: a dazzling blizzard of fat white swirling feathers. The temptation to run outside and frolic in the snow with the college kids was strong, but was deemed unseemly, and dignity prevailed.
While Jimmy was napping this morning, I went to the apartment to change clothes, then made a quick detour to Target, hoping to improve my sleeping situation. A small floor lamp (so that my late night reading doesn't disturb Jimmy) and an egg-crate foam mattress pad (this chair thing is murder on the back) and some new pillows have made my little nest a lot cozier.
Tuesday, January 15, 2008
Day One
* * * * * * * *Dr. Amelia Langston * * * * * *
* * * * * * * * It's hard to believe Jimmy's sick* * * * * * *
Jimmy and Jamey and an ice chest full of popsicles, waiting to be admitted to the hospital
* * * *above, Jimmy's bed; below, my bed * * * *
(* * * * ** A Room With A View * * * * * *
* * * * * * * * It's hard to believe Jimmy's sick* * * * * * *
Jimmy and Jamey and an ice chest full of popsicles, waiting to be admitted to the hospital
* * * *above, Jimmy's bed; below, my bed * * * *
(* * * * ** A Room With A View * * * * * *
We were processed in today to begin serving our sentence. If Jimmy behaves himself, we'll be placed under house arrest in the apartment for two more months, and then on indefinite parole.
Jimmy had his first dose of melphalan at the infusion center this afternoon, then we checked into the hospital. No side effects so far.
Monday, January 14, 2008
Medical Trivia
You can pick up all kinds of informative tidbits when you spend your time hanging around hospitals. One of the nurses who used to work in bone marrow transplant told us that in addition to the Kepivance, if you keep something cold in your mouth during, and for thirty minutes after, the administration of chemo, it'll prevent mouth sores. I bought a big box of popcicles today, and we figure that between those and crushed ice, we can keep the inside of Jimmy's mouth cold for a few hours tomorrow and Wednesday and Thursday.
Last week, Jimmy was complaining to the nurses about the neuropathy in his feet (painful tingling nerve damage caused by chemo, that makes his feet feel like they're asleep). Another patient sitting nearby overheard, and told us that soaking your feet in warm water with epsom salts helps. We tried it last night, and Jimmy said it gave him a lot of relief.
We also learned that after after the transplant, Jimmy will have to be re-vaccinated for everything. His immune system will be gone, so he'll be starting over at ground zero, just like a baby.
Last week, Jimmy was complaining to the nurses about the neuropathy in his feet (painful tingling nerve damage caused by chemo, that makes his feet feel like they're asleep). Another patient sitting nearby overheard, and told us that soaking your feet in warm water with epsom salts helps. We tried it last night, and Jimmy said it gave him a lot of relief.
We also learned that after after the transplant, Jimmy will have to be re-vaccinated for everything. His immune system will be gone, so he'll be starting over at ground zero, just like a baby.
Sunday, January 13, 2008
Kepivance
One of the most common and serious side effects of the high-dose chemotherapy that Jimmy will be getting this coming week is severe oral mucositis: painful ulcerative lesions of the mouth and throat, which make eating, drinking, and swallowing very difficult. A couple of years ago, a drug called Kepivance came out, that greatly reduces the severity and duration of these sores. Yesterday and this morning, Jimmy started intravenous infusions of Kepivance, and we hope it lives up to its reputation.
Jimmy is doing so well. He looks great, and feels good, and we have every expectation that in a few months, we'll get our life back. Maybe it's a good thing that the first stem cell collection attempt was less than successful; Jimmy is in much better shape now than he was four months ago.
We have to be back at Emory at eight in the morning, for more Kepivance, and a bone marrow biopsy. (He'll have another biopsy done Friday.) We check into the hospital Tuesday.
Jimmy is doing so well. He looks great, and feels good, and we have every expectation that in a few months, we'll get our life back. Maybe it's a good thing that the first stem cell collection attempt was less than successful; Jimmy is in much better shape now than he was four months ago.
We have to be back at Emory at eight in the morning, for more Kepivance, and a bone marrow biopsy. (He'll have another biopsy done Friday.) We check into the hospital Tuesday.
Friday, January 11, 2008
Jimmy Bolen
Jimmy and I are spending most of our time these days in rooms populated by cancer patients and their caregivers. On some of their faces, you can see the stunned, bewildered expression of the newly-diagnosed, and on others, battle-hardened warriors like we are, a numbed, weary acceptance, but the common thread that runs through it all is hope. Hope is a great thing to have, but you also need to be in the right place, with the right team of doctors.
Not many days go by that Jimmy and I don't talk about how fortunate we are to be here at Emory. When this life-shattering bomb falls on you, you're so shocked and frightened and confused, you don't know where to turn. We ended up taking the advice of our friend, Jimmy Bolen, and we will be eternally grateful to him for pointing us in the right direction, and getting involved on our behalf.
Jimmy Bolen went to Valdosta High School with my Jimmy, then on to Emory, and later to medical school at Johns Hopkins in Baltimore. He's married to the former Phyllis Giles from Valdosta, and is Virginia Bennett's brother, and Leigh Pendleton Smith's uncle. He lives in Orlando, where he is a cardiologist. As bright a person as you'll ever meet, he's a whiz kid in both medicine and business, is energetic and gregarious, and has tons of friends. He and Phyllis have a house near ours in the Bahamas, so Jimmy and I see them fairly often there.
A few days after we found out that Jimmy had multiple myeloma, Jimmy Bolen called. "I hear you've got some problems," he said. " Do you want a second opinion? I think you need to talk to some people at Emory."
Not many days go by that Jimmy and I don't talk about how fortunate we are to be here at Emory. When this life-shattering bomb falls on you, you're so shocked and frightened and confused, you don't know where to turn. We ended up taking the advice of our friend, Jimmy Bolen, and we will be eternally grateful to him for pointing us in the right direction, and getting involved on our behalf.
Jimmy Bolen went to Valdosta High School with my Jimmy, then on to Emory, and later to medical school at Johns Hopkins in Baltimore. He's married to the former Phyllis Giles from Valdosta, and is Virginia Bennett's brother, and Leigh Pendleton Smith's uncle. He lives in Orlando, where he is a cardiologist. As bright a person as you'll ever meet, he's a whiz kid in both medicine and business, is energetic and gregarious, and has tons of friends. He and Phyllis have a house near ours in the Bahamas, so Jimmy and I see them fairly often there.
A few days after we found out that Jimmy had multiple myeloma, Jimmy Bolen called. "I hear you've got some problems," he said. " Do you want a second opinion? I think you need to talk to some people at Emory."
Within hours, Jimmy (Dewar) was on the phone with Dr. Rein Saral, oncologist and chief medical director at Emory (and with whom we had had dinner several times in the Bahamas, when he and his wife were there as guests of the Bolens), and with Dr. Sagar Lonial, who is recognized as one of the top hematological oncologists in the world for multiple myeloma. Only last month, the Multiple Myeloma Research Consortium (MMRC) gave Emory Hospital and Dr. Lonial the 2007 MMRC Center of the Year Award.
We hate it that Jimmy got this awful thing, but it's the journey we're on now, and every day we find so much to be thankful for, not the least of which are good friends like Jimmy Bolen, and this wonderful medical community we've become a part of, here at Emory.
Thursday, January 10, 2008
Jimmy's diet
We finished our last collection procedure today; we don't expect this latest number to be very high, but that's OK. We have more than enough. Jimmy is a stem cell Scrooge: his body hoards them stingily, and fights letting them go, but persistence and three good doses of AMD3100 have persuaded him to part with well over eight million cells. During the last several months, one of our biggest fears has been that we could not harvest what was needed, so this success is a tremendous relief.
With that behind us, our new project is to build Jimmy's blood back up; they may need to give him another transfusion tomorrow, but we're also working on it from the dietary angle. When we left the hospital, we headed for a nearby restaurant, Evans Fine Foods, recommended by some of the nurses, that's sort of like Bynum's Diner in Valdosta. Jimmy over-ordered, and couldn't eat half of it, but he made a valiant effort trying. He ate baked chicken with dressing, fried eggplant, turnip greens, tomatoes and okra, and corn muffins with lots of butter. When he wakes up from his nap, I'm going to force some pre-dinner milkshakes on him, and maybe a peanut butter and banana sandwich, with French fries on the side, as instructed.
This whole thing is too surreal for words.
With that behind us, our new project is to build Jimmy's blood back up; they may need to give him another transfusion tomorrow, but we're also working on it from the dietary angle. When we left the hospital, we headed for a nearby restaurant, Evans Fine Foods, recommended by some of the nurses, that's sort of like Bynum's Diner in Valdosta. Jimmy over-ordered, and couldn't eat half of it, but he made a valiant effort trying. He ate baked chicken with dressing, fried eggplant, turnip greens, tomatoes and okra, and corn muffins with lots of butter. When he wakes up from his nap, I'm going to force some pre-dinner milkshakes on him, and maybe a peanut butter and banana sandwich, with French fries on the side, as instructed.
This whole thing is too surreal for words.
Wednesday, January 9, 2008
1.8 M and collecting again tomorrow
Long days, these. Again, we arrived at the hospital before daybreak, and it was almost dark by the time we got home. Jimmy is bone tired, and there's still more to come; he's in bed now, resting up for the next event.
Today's dawn to dusk stem cell foray culminated in the capture of 1.8 million more of the elusive little rascals. Although our numbers are much more comfortable now, we're collecting again tomorrow, thus Barbara Henry's ten o'clock AMD3100 injection tonight, and the same old song and dance in the morning. Having never been early risers, Jimmy and I are finding our current schedule most disagreeable.
Already low, Jimmy's red blood count dropped to below 8 after today's harvest, so they sent us over to hematology for a transfusion. By the time they had cross-typed his blood, and processed the order, and transfused Jimmy, another day had passed, and we were the last to leave the building.
Today's dawn to dusk stem cell foray culminated in the capture of 1.8 million more of the elusive little rascals. Although our numbers are much more comfortable now, we're collecting again tomorrow, thus Barbara Henry's ten o'clock AMD3100 injection tonight, and the same old song and dance in the morning. Having never been early risers, Jimmy and I are finding our current schedule most disagreeable.
Already low, Jimmy's red blood count dropped to below 8 after today's harvest, so they sent us over to hematology for a transfusion. By the time they had cross-typed his blood, and processed the order, and transfused Jimmy, another day had passed, and we were the last to leave the building.
Tuesday, January 8, 2008
Almost 6 million, and climbing
We collected 2.7 million stem cells today: respectable, but Jimmy and I were hoping for a little higher count than that. Added to those we have stored from the September collection, there are more than enough to go into transplant next week, but optimally, Dr. Lonial would like to have around ten million , so we'll go through the process again tomorrow, and Thursday and Friday, too, if necessary.
We were at the hospital before dawn this morning, and were not back at the apartment until mid-afternoon. Sleepy and serene, Jimmy napped, and chatted with the nurses, but my antsy Mackey genes were in high gear, and Jimmy said that I could have walked to Valdosta and back, for all the pacing I did.
We're continuing the Neupogen shots, and Barbara comes back again at ten tonight to give Jimmy the AMD3100, then it's back to Emory before daylight tomorrow.
Monday, January 7, 2008
AMD3100
After all the fuss we've made over this "new drug", AMD3100, one would expect, at the very least, that it would be ushered in with a brass band, or a flourish of trumpets heralding its arrival. Not so. At ten o'clock tonight, a very nice home health nurse named Barbara Henry came to the apartment, took Jimmy's vital signs, and a couple of vials of blood, gave him the shot and left. That simple.
However, because of that simple little shot , when we get home from the hospital tomorrow afternoon, we expect to be well on our way to having enough stem cells to do Jimmy's transplant next week. Barbara told us tonight that it usually takes two or three sessions to get enough, but that's OK, as long a we get them. We should know tomorrow's count by six o'clock PM.
However, because of that simple little shot , when we get home from the hospital tomorrow afternoon, we expect to be well on our way to having enough stem cells to do Jimmy's transplant next week. Barbara told us tonight that it usually takes two or three sessions to get enough, but that's OK, as long a we get them. We should know tomorrow's count by six o'clock PM.
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