Yesterday was my day-long visit to Dana-Farber. It was a very long day. I fell asleep 5 minutes after we started the drive home.
Overall, it was a very positive and encouraging day. Dr. Anderson continues to be impressed with my rapid and complete response to the treatment. He noted that it bodes well for my living a long life. To quote him: "I think, even with the myeloma, you will live as long as you would have without having developed myeloma." That was excellent news! Should I have told him that my paternal grandfather lived to 91 and my Uncle Joe lived to 95?? I always believed I would live as long as Uncle Joe.
My day started with an appointment with my transplant nurse Muriel and Dr. Anderson later joined us. Muriel was very thorough and explained each day in detail. The good news: I may not be on a severely restricted diet for a year! Eating processed food for a year was...unappetizing to me. The bad news: I probably won't lose the anticipated 15 lbs, but maybe only 7lbs. I almost called the transplant off when I heard that! Hey, if I'm going down that long dark road, I want to be accompanied by some good weight loss!
But seriously, after talking with Muriel, I feel better about the Cytoxan. As long as I start drinking 2 liters of water a day, the side effects should be minimal. The downside, though, is that I will be wearing a mask earlier than I thought. I thought I'd be wearing a mask maybe after the stem cell harvest until I arrived at the hospital. Unfortunately, the mask goes on August 5th, after the Cytoxan. That means the following week I will need to work from home, not the office - definitely not in my original plans. I can still go to morning Mass, though, if I sit in the empty front rows and wear a mask.
I also feel better about the harvest. I don't need to sit perfectly still since they will be drawing blood from my Hickman rather than my arm. I even feel a little better about the Melphalan. I'll have a few days of no side effects - I might even make it to my birthday! Then it goes downhill rather rapidly for a week. Anyone ever swallow razor blades? She said it may possibly feel like that as I try to down my 2 liters of fluid a day...and as I resist the urge to....never mind - it's ugly. Really ugly. But a week later, I'll feel better :-) I can make it through an ugly week! (would someone please remind me of that when I start to whine??)
After Muriel and Dr. A, I had a lab appointment. Remember in my last posting I wrote "what would a day be without a lab test"? Well, this was quite a lab visit: 26 vials of blood were drawn. Yes, that's right, no typo - 26 vials! Holy moly! (Holy moly?? That's lame. Batman or Robin would have something much more creative to say). As I saw the lab nurse walking toward me with the tray of vials, I assumed she was restocking her cart, but no, they were all for me. Every last one of them. And she couldn't access my port, so it all came from my arm - and you know how my veins feel about that!
A visit with the social worker (she said it seems like we have a good support system. Thank you very much, to all of you!) and a pulmonary function test (Dr. Weil and your breathing CD helped me through this) and a bit of waiting around in between and we were done. Start time at D-F: 9am. End time: 4:30. 26 vials in-between = long day.
And now the counting starts. T minus 9 days to 'mobilization.' I'm ready!
Tuesday, July 26, 2011
Saturday, July 16, 2011
Upcoming dates
Yesterday was my last day of my regular chemo! The chemo was effective and had few side effects. How fortunate I have been! Truly, how fortunate I have been. And now I have time to focus on good eating, exercising, and settling in, if only briefly, at work. No more worrying about drug-induced insomnia; no more worrying about drug-induced swollen legs and feet; no more worrying about drug-induced....wait - there's actually no more worrying about drugs! I'll have more time, too, to prepare myself for the next phase of treatment: stem cell transplant.
Some upcoming dates:
July 25th - 'Consent Day' at Dana-Farber, a full day of information exchange, conversation, tests (what would a day be without lab tests??), and meeting my entire healthcare team
July 30th - Mom arrives
August 2nd - sister Linda arrives
August 5th - 'Mobilization' (the beginning phase of the stem cell process) begins with a full day in the chemo chair with a new and more powerful drug - Cytoxan, meant begin the demolition of my immune system. A bit more scary than what I've received thus far.
August 6th - Levaquin, a broad spectrum antibiotic, starts...hmmm, don't know for how long.
August 7th - the beginning of 10 days of injections of neupogen to boost the production of my stem cells. Thankfully, I can give myself the injections since the needle is similar to the insulin needles I used for so many years, so I don't need to worry about traveling to the doctor's office.
August 15th - the out-patient placement of a Hickman line under my right chestbone. The Hickman line has been described as 'garden hoses.' Unlike the implanted port on the left side, the Hickman will protrude and have 2 'garden hoses' extending from it. Now won't that be an interesting sight??
August 16th - the first harvest of my stem cells. I heard that I must sit perfectly still during the harvest. I don't know how many stem cells need to be harvested, but I understand the number is in the millions. Also out-patient.
August 17th - more harvesting if needed
August 20th - I'll be admitted to Brigham and Women's Hospital. I'll have my own sterile little bubble room. Nothing can enter the room without the item being wiped down, and all visitors must wear a mask and gloves and be healthy.
August 21st and 22nd - Melphalan days, which I'm calling demolition days. I'm not looking forward to these days. No, I'm not looking forward to these days at all. Though I have escaped serious side effects from my regular RVD chemo, melphalan will be considerably less kind, but it will seek out and destroy any myeloma cells hiding in my body. It will all but destroy my immune system, too.
August 23rd - my stem cells come home! My stem cells will be infused back into me at some point during the day in a very short procedure - we're talking 15 or 20 minutes!
September 7th - my anticipated hospital discharge.
There are many more details to add, but I wanted to let everyone know what my schedule will be like in the coming month. I'll update again after my July 25th Dana-Farber appointment.
Until then, it's summer and the days are perfect! And I'm going for a tiny, little, very small, no-steeper-than-my-driveway hike! The beat goes on :-)
Some upcoming dates:
July 25th - 'Consent Day' at Dana-Farber, a full day of information exchange, conversation, tests (what would a day be without lab tests??), and meeting my entire healthcare team
July 30th - Mom arrives
August 2nd - sister Linda arrives
August 5th - 'Mobilization' (the beginning phase of the stem cell process) begins with a full day in the chemo chair with a new and more powerful drug - Cytoxan, meant begin the demolition of my immune system. A bit more scary than what I've received thus far.
August 6th - Levaquin, a broad spectrum antibiotic, starts...hmmm, don't know for how long.
August 7th - the beginning of 10 days of injections of neupogen to boost the production of my stem cells. Thankfully, I can give myself the injections since the needle is similar to the insulin needles I used for so many years, so I don't need to worry about traveling to the doctor's office.
August 15th - the out-patient placement of a Hickman line under my right chestbone. The Hickman line has been described as 'garden hoses.' Unlike the implanted port on the left side, the Hickman will protrude and have 2 'garden hoses' extending from it. Now won't that be an interesting sight??
August 16th - the first harvest of my stem cells. I heard that I must sit perfectly still during the harvest. I don't know how many stem cells need to be harvested, but I understand the number is in the millions. Also out-patient.
August 17th - more harvesting if needed
August 20th - I'll be admitted to Brigham and Women's Hospital. I'll have my own sterile little bubble room. Nothing can enter the room without the item being wiped down, and all visitors must wear a mask and gloves and be healthy.
August 21st and 22nd - Melphalan days, which I'm calling demolition days. I'm not looking forward to these days. No, I'm not looking forward to these days at all. Though I have escaped serious side effects from my regular RVD chemo, melphalan will be considerably less kind, but it will seek out and destroy any myeloma cells hiding in my body. It will all but destroy my immune system, too.
August 23rd - my stem cells come home! My stem cells will be infused back into me at some point during the day in a very short procedure - we're talking 15 or 20 minutes!
September 7th - my anticipated hospital discharge.
There are many more details to add, but I wanted to let everyone know what my schedule will be like in the coming month. I'll update again after my July 25th Dana-Farber appointment.
Until then, it's summer and the days are perfect! And I'm going for a tiny, little, very small, no-steeper-than-my-driveway hike! The beat goes on :-)
Friday, July 8, 2011
News of the day
Blood work - normal
Skeletal survey - normal
Bone marrow biopsy - normal
Yes, those were my results from today! No multiple myeloma present in my body. I'd been having normal blood work for the last few weeks, so that wasn't a surprise. But the latest bone marrow biopsy, well, that was a surprise.
You're probably wondering what this all means. Me, too. Hmmm. The PA said I had outstanding response to the treatment and I'm in remission.
Do I still need the stem cell transplant scheduled for August 20th?
Yes.
I'm not cured?
No, we're hesitant to talk about 'being cured' when it comes to multiple myeloma.
Then why is everything normal?
Because you had an outstanding response to treatment.
Hmmm.
I think it's because grace is shining on me.
Skeletal survey - normal
Bone marrow biopsy - normal
Yes, those were my results from today! No multiple myeloma present in my body. I'd been having normal blood work for the last few weeks, so that wasn't a surprise. But the latest bone marrow biopsy, well, that was a surprise.
You're probably wondering what this all means. Me, too. Hmmm. The PA said I had outstanding response to the treatment and I'm in remission.
Do I still need the stem cell transplant scheduled for August 20th?
Yes.
I'm not cured?
No, we're hesitant to talk about 'being cured' when it comes to multiple myeloma.
Then why is everything normal?
Because you had an outstanding response to treatment.
Hmmm.
I think it's because grace is shining on me.
Friday, July 1, 2011
The kindness of strangers
Something unusual happened to me yesterday, but I think it was something meant to happen in the greater plan of life.
I had met a colleague in the parking lot of a small local plaza. I had ended my position as treasurer on a non-profit board and was delivering my files to the new treasurer. I parked a few rows over from her, not seeing her at first, grabbed my filebox, my keys, and my debit card, thinking I would treat her to coffee and a pastry as we reviewed the role of treasurer. I think she planned to just take the files and run, ready to assume her role. However, as I began explaining the paperwork to her, she said, "Wait, let's put that filebox in the backseat of my car and we can look at the files from there." Ok, no coffee and pastry. I slid the debit card into my back pocket, placed the filebox and my keys on the backseat, and began my tutorial.
An hour later, still coffee-less, we finished. She drove away, I went to get my long-awaited coffee (and I did skip the pastry...really!), walked back to my car and - "Where are my keys??" I looked under my car, I looked in the parking spot where we exchanged files, I went inside the coffee shop - no keys. Oh boy. This was going to be a problem. My cellphone was in my locked car. My wallet was in my locked car. My house was 5 miles away. And I was wearing $2 flip-flops. And it was hot.
Hmmmm. What to do? I asked a lovely old lady, sitting outside of Dunkin' Donuts, if I might use her cellphone. After explaining my conundrum, she loaned me her phone. I called home once, twice, thrice....no answer. Now I knew my son Joseph was at home, asleep. Joseph, however, has the gift of solid sleep that I do so envy. He often has to be shaken awake. Oh to sleep so soundly!!
There seemed to be no choice but to take my coffee and walk. But should I get a pastry, that was the question! Back into Dunkin' Donuts I went and got a bagel. I walked to the end of the plaza and decided to go into the small grocery store for a bottle of juice - can't be having low blood sugar on a 5 mile walk home without a cellphone or identification.
In the grocery store, I was bemoaning my situation to the cashier, and the manager and another cashier overheard me. The manager offered me the phone. Once, twice, thrice I called home....no answer. The manager said, "You can't walk home in this weather. Jo here is going to drive you." Jo is a woman maybe 10 or 15 years older than me and she offered to drive me home. It wasn't the end of her shift, but the manager told her to not go off the clock, just take care of the customer. The kindness of strangers.
As we drove, I was explaining what had happened to my keys. And then I said something I never say to someone I don't know (and sometimes I don't even admit this to people I do know!), " I just finished my chemo so my head is a bit fogged." The car slowed down and Jo reached over and squeezed my arm. With tears in her eyes, she choked out, "I was just diagnosed." Like me a few months earlier, she couldn't say cancer. We talked the whole way home. I offered her support and comfort, suggested she pray and everything would be as it should. Told her that it was ok to cry, that crying isn't a sign of weakness, told her that I cried a good part of the day before. You can cry and still be strong. Cancer is scary but she's not alone. We're never alone.
In my driveway, she hugged me and said somehow, strange as it was, she loved me, and it was meant for us to meet.
At home, Joseph was awake and had called his father to find out why the grocery store kept calling. "Did mom order something? Was I supposed to pick up something from there?" Yes, he had been awake for these grocery store calls but didn't answer the phone. I, too, think it was because Jo and I were meant to meet.
I had met a colleague in the parking lot of a small local plaza. I had ended my position as treasurer on a non-profit board and was delivering my files to the new treasurer. I parked a few rows over from her, not seeing her at first, grabbed my filebox, my keys, and my debit card, thinking I would treat her to coffee and a pastry as we reviewed the role of treasurer. I think she planned to just take the files and run, ready to assume her role. However, as I began explaining the paperwork to her, she said, "Wait, let's put that filebox in the backseat of my car and we can look at the files from there." Ok, no coffee and pastry. I slid the debit card into my back pocket, placed the filebox and my keys on the backseat, and began my tutorial.
An hour later, still coffee-less, we finished. She drove away, I went to get my long-awaited coffee (and I did skip the pastry...really!), walked back to my car and - "Where are my keys??" I looked under my car, I looked in the parking spot where we exchanged files, I went inside the coffee shop - no keys. Oh boy. This was going to be a problem. My cellphone was in my locked car. My wallet was in my locked car. My house was 5 miles away. And I was wearing $2 flip-flops. And it was hot.
Hmmmm. What to do? I asked a lovely old lady, sitting outside of Dunkin' Donuts, if I might use her cellphone. After explaining my conundrum, she loaned me her phone. I called home once, twice, thrice....no answer. Now I knew my son Joseph was at home, asleep. Joseph, however, has the gift of solid sleep that I do so envy. He often has to be shaken awake. Oh to sleep so soundly!!
There seemed to be no choice but to take my coffee and walk. But should I get a pastry, that was the question! Back into Dunkin' Donuts I went and got a bagel. I walked to the end of the plaza and decided to go into the small grocery store for a bottle of juice - can't be having low blood sugar on a 5 mile walk home without a cellphone or identification.
In the grocery store, I was bemoaning my situation to the cashier, and the manager and another cashier overheard me. The manager offered me the phone. Once, twice, thrice I called home....no answer. The manager said, "You can't walk home in this weather. Jo here is going to drive you." Jo is a woman maybe 10 or 15 years older than me and she offered to drive me home. It wasn't the end of her shift, but the manager told her to not go off the clock, just take care of the customer. The kindness of strangers.
As we drove, I was explaining what had happened to my keys. And then I said something I never say to someone I don't know (and sometimes I don't even admit this to people I do know!), " I just finished my chemo so my head is a bit fogged." The car slowed down and Jo reached over and squeezed my arm. With tears in her eyes, she choked out, "I was just diagnosed." Like me a few months earlier, she couldn't say cancer. We talked the whole way home. I offered her support and comfort, suggested she pray and everything would be as it should. Told her that it was ok to cry, that crying isn't a sign of weakness, told her that I cried a good part of the day before. You can cry and still be strong. Cancer is scary but she's not alone. We're never alone.
In my driveway, she hugged me and said somehow, strange as it was, she loved me, and it was meant for us to meet.
At home, Joseph was awake and had called his father to find out why the grocery store kept calling. "Did mom order something? Was I supposed to pick up something from there?" Yes, he had been awake for these grocery store calls but didn't answer the phone. I, too, think it was because Jo and I were meant to meet.
Subscribe to:
Posts (Atom)