It's been more than a week since I've written. Not much has changed; I'm still unsure when the chemo and hospital stay begin. That sort of put life on hold...including thanksgiving.
Last week, I got switched to a different pill for the edema. 40 mg of Lasix is supposed to be stronger than what I was taking for my Meniere's. That doesn't seem to be the case. I've gained lots more weight, all in fluid retention I think/hope. My blood pressure is way up; usually 110/65, it was 133/85 the other day. A call to the nephrologist has again gone unreturned for a day; hopefully they call back today with something stronger. I'm swelling all over now, not just my feet and ankles. Of course, the added girth must be fluid, right?
Last Friday, I had a tooth pulled for this. Other than wisdom teeth, this was a first. I had some gum trouble more than 10 years ago but was able to keep all my teeth. This one, a molar, had less bone and more tooth showing so, when it got sensitive to cold, it became an infection threat and had to go before they wipe out my immune system. Some of you may remember Lewis Grizzard; he had a tooth infection that traveled to his heart's pig valve and killed him. Knowing that, it's easier to accept the loss of a tooth. After all this is done, I'll get an implant for it. For now, it really feels funny to be able to stick my tongue between two teeth back there.
This past Saturday & Sunday, I sat around...a lot. I'm getting tired easier now. I'm also getting tired of the waiting. To be honest, it sucks. I'm ready to get this show on the road...the sooner it starts, the sooner it ends!
Even though the doc told me I can work while in the hospital, I'm having a time getting our HR dept. to understand. The official policy doesn't cover someone who's fine...just a little weak and confined to a mostly sterile ward. We got past the 'you will not work while on sick leave' to 'the company can have no demands or expectations while on leave'. I don't even want to call it 'leave'. Now the assigned social worker (yup, got one of those of the team) is working on a note for them. We'll see how that all falls out over the next few weeks. I just know I'll go stir-crazy if I can't work.
My wife, Alice, is one incredible woman. Several people have said they'd be going nuts if their husband was going through this. Unless you know Alice, you'd never know she was going through something.
She loves Thanksgiving and looks forward to it every year; it's an opportunity to have lots of people over. This stuff isn't going to stop her. Always a very determined woman, she's decided that this year Thanksgiving would be on Nov. 10th instead. Most of our regulars have changed their schedules and will be here. I'll be on the growth hormone but should be fine...maybe even a bigger appetite than usual;-). Just in case, Alice is prepared to do it all without my help. Yup, if I want to, I can just sit back and watch everybody else work while I lay back and relax. Wonder if I can just fake it:-).
That's it for now...things to hope for in the next few days:
A new diuretic prescription that'll have me losing LOTS of weight
A shipment from Amazon with some books and music to help pass the time at the hospital.
A MASSAGE on Thursday!!! I should mention that I'm addicted to my massages. 90 minutes every 3 weeks is absolutely wonderful. I highly recommend it to everybody. (but I will not give my masseuse's name out. I did that once and she got so busy, I couldn't get any appointments anymore).
Wednesday, October 31, 2007
Monday, October 22, 2007
After the Evals
Thursday, Oct 18th:
The day after the two evaluations, I went to my dentist to have a temperature-sensitive tooth looked at. I also found out that I needed a dental signoff before the treatments could begin. Another half day at work, half day at a doctor....getting to be a bad habit.
The dentist decided that the tooth should go and I get referred to Emory's oral surgery center for the extraction. On top of that, he x-ray'ed ALL my teeth to see if there's anything else going on. Lucky for me, they all look good.
Thursday, I call Emory for an appt. The phone is answered quickly but I'm told it'll take 5 minutes for a real person to answer. After 10 minutes, the Emory commercials end and the phone rings...and rings...and rings...etc. Patiently, I wait another 5 minutes and then hang up. The second time, I'm told it's only a 2 minute wait...at the end of which the phone rings...and rings....until I hang up again.
A note to Sarah, the "transplant coordinator" and all-around go-to person gets answered early friday morning. It turns out that Emory's dental center closes at 4...I called at 4:10! So why can't their voicemail say that:-(.
Friday, Oct 19th:
So Sarah contacts them and is told they're booked until late November..too late to be done in time. Back to the dentist for another referral...
He calls them and is told that, if I talk with Laurie, they'll squeeze me in. I look at the clock and it's now 4:05. At least this time I know better than to even try calling until Monday.
After work Friday, we headed to our favorite weekend getaway near Callaway Gardens. What great timing; we made these plans a year ago...an annual picnic with friends we've made through a b&b over the past few years.
We all stayed up late playing "nines", an almost mindless card game that's become a tradition here at Magnolia Hall. Lots of jokes and laughter surround the game...exactly what I need.
Saturday, Oct 20th:
The next morning, over coffee, we find that one of the guests was taken to the hospital with chest pains and trouble breathing overnight. But she's back now and joins us for breakfast, albeit a little late. Turns out it was probably an anxiety attack. But it also highlights just how fragile life can be. Anything can happen at any time with no warning. I realize just how fortunate I truly am to have caught this disease so early.
Saturday, the weather is gorgeous and the picnic is pretty good. A local couple throw this every year for a few thousand of their best friends...being guests at the B&B qualifies us. Great barbecued chicken and ribs. Corn on a cob cooked in their husks...the husks get peeled back and used as handles. And the dessert table is about 15 feet long, every inch of which is covered with homemade goodies. As usual, we will all make reservations at the B&B for next year before the weekend ends.
After the picnic, everyone seems pretty wiped out. Some are chatting on the porch; I came inside to put my swollen feet and ankles up for awhile...the edema has been getting worse and I hope to go on a stronger diuretic on Monday to help (and maybe I'll be able to fit into my shoes again).
For dinner, we've got reservations for 12 people at a little hole in the wall bar/restaurant where they have fantastic food and pool tables; what a combination, huh. I ate very well that evening and I know I'll sleep well tonight.
Sunday, October 21st:
Another wonderful breakfast followed by a trip home. I ran a few errands and then fell asleep in a chair...not something I do very often.
One thing that, looking back, I've left out. When we got to the B & B, we discovered that our room was upstairs...a very nice suite of rooms. Unfortunately, it's at the top of a single staircase that's 24 steps high. I got to the top and was winded. That really surprised me. Looking back, I've also noticed that by the end of a typical work day, I'm tired when I get home. Again, a surprise. I had been in pretty good shape so to watch my strength begin going away is a little depressing. At least I know we're going to fix this. And I suppose it'll help me get ready for being weakened by the chemo.
Monday, October 22nd:
This morning, I was able to work out the tooth extraction with Laurie from the Emory dental clinic. We're on for Friday, the 26th. To make things easier, they're going to do it with only a local anesthetic. That means I can drive to/from it by myself. One more obstacle hurdled successfully. Of course, I'm ignoring life lesson #237 but I don't always learn from my mistakes.
Now I'm waiting for a return call from my nephrologist...again. My feet and ankles are swollen. I really wish I took his Lasix prescription when I saw him.
The day after the two evaluations, I went to my dentist to have a temperature-sensitive tooth looked at. I also found out that I needed a dental signoff before the treatments could begin. Another half day at work, half day at a doctor....getting to be a bad habit.
The dentist decided that the tooth should go and I get referred to Emory's oral surgery center for the extraction. On top of that, he x-ray'ed ALL my teeth to see if there's anything else going on. Lucky for me, they all look good.
Thursday, I call Emory for an appt. The phone is answered quickly but I'm told it'll take 5 minutes for a real person to answer. After 10 minutes, the Emory commercials end and the phone rings...and rings...and rings...etc. Patiently, I wait another 5 minutes and then hang up. The second time, I'm told it's only a 2 minute wait...at the end of which the phone rings...and rings....until I hang up again.
A note to Sarah, the "transplant coordinator" and all-around go-to person gets answered early friday morning. It turns out that Emory's dental center closes at 4...I called at 4:10! So why can't their voicemail say that:-(.
Friday, Oct 19th:
So Sarah contacts them and is told they're booked until late November..too late to be done in time. Back to the dentist for another referral...
He calls them and is told that, if I talk with Laurie, they'll squeeze me in. I look at the clock and it's now 4:05. At least this time I know better than to even try calling until Monday.
After work Friday, we headed to our favorite weekend getaway near Callaway Gardens. What great timing; we made these plans a year ago...an annual picnic with friends we've made through a b&b over the past few years.
We all stayed up late playing "nines", an almost mindless card game that's become a tradition here at Magnolia Hall. Lots of jokes and laughter surround the game...exactly what I need.
Saturday, Oct 20th:
The next morning, over coffee, we find that one of the guests was taken to the hospital with chest pains and trouble breathing overnight. But she's back now and joins us for breakfast, albeit a little late. Turns out it was probably an anxiety attack. But it also highlights just how fragile life can be. Anything can happen at any time with no warning. I realize just how fortunate I truly am to have caught this disease so early.
Saturday, the weather is gorgeous and the picnic is pretty good. A local couple throw this every year for a few thousand of their best friends...being guests at the B&B qualifies us. Great barbecued chicken and ribs. Corn on a cob cooked in their husks...the husks get peeled back and used as handles. And the dessert table is about 15 feet long, every inch of which is covered with homemade goodies. As usual, we will all make reservations at the B&B for next year before the weekend ends.
After the picnic, everyone seems pretty wiped out. Some are chatting on the porch; I came inside to put my swollen feet and ankles up for awhile...the edema has been getting worse and I hope to go on a stronger diuretic on Monday to help (and maybe I'll be able to fit into my shoes again).
For dinner, we've got reservations for 12 people at a little hole in the wall bar/restaurant where they have fantastic food and pool tables; what a combination, huh. I ate very well that evening and I know I'll sleep well tonight.
Sunday, October 21st:
Another wonderful breakfast followed by a trip home. I ran a few errands and then fell asleep in a chair...not something I do very often.
One thing that, looking back, I've left out. When we got to the B & B, we discovered that our room was upstairs...a very nice suite of rooms. Unfortunately, it's at the top of a single staircase that's 24 steps high. I got to the top and was winded. That really surprised me. Looking back, I've also noticed that by the end of a typical work day, I'm tired when I get home. Again, a surprise. I had been in pretty good shape so to watch my strength begin going away is a little depressing. At least I know we're going to fix this. And I suppose it'll help me get ready for being weakened by the chemo.
Monday, October 22nd:
This morning, I was able to work out the tooth extraction with Laurie from the Emory dental clinic. We're on for Friday, the 26th. To make things easier, they're going to do it with only a local anesthetic. That means I can drive to/from it by myself. One more obstacle hurdled successfully. Of course, I'm ignoring life lesson #237 but I don't always learn from my mistakes.
Now I'm waiting for a return call from my nephrologist...again. My feet and ankles are swollen. I really wish I took his Lasix prescription when I saw him.
Wednesday, October 17, 2007
The Fun Begins
Well, it's been a few days since the first/last post. I kept telling myself "I've got to finish up the history before I start the ongoing posts".
Today I realized that things are going so fast that I'll never catch up. So, I'll give up on the history, unless I remember something that's relevant.
Since the last post, the insurance company gave approval for the next step, two days days of testing and orientation.
Yesterday, I started the process. 9am until 3pm, I was interviewed, taught how to give myself injections of growth hormone and how to clean the three-headed catheter thing they'll plug into a vein for easy access; it'll be my buddy for the next few months. I had an ekg, echocardiogram, TWENTY tubes of blood taken for testing. To top it all off, a 90 minute talk with a shrink. Whew...I was wiped out after all that.
Today, another 9am start. This was a shorter day, since I've already had a bone marrow biopsy. An hour class on the hemapheresis (blood separating) machine that'll extract my stem cells from my blood and return the rest of the blood to me. A "Pulmonary Function Test" followed, where I impressed the tech with my "exercise-enhanced" lungs. I got to lie down after that while they took x-rays of my entire body, from head to toes including arms, and several angles of each.
I got my schedule for the next few weeks and have an idea of when things will happen.
Assuming the insurance company and others review the test results and I'm still a go, I'll start giving myself growth-hormone shots on November 9th.
On November 12th, they'll knock me out and put in the central line (three-lead venous catheter). Starting November 13th, they start collecting stem cells...4-5 hours a day for about 2 days, sometimes more, sometimes less) until they have enough.
Soon after that, I go into the hospital's ward for compromised immune system patients. I get a single large dose of chemotherapy drugs. Two days after that, they give me back my stem cells, whose job is now to regrow my immune system from scratch.
Oh yeah, in the meantime, my kidney doc's partner (who thinks he's G-d and that I'm HIS patient) left a message to call his office. I did yesterday but he hasn't returned my call yet. And he wonders why I don't like him ;-)
Well, that's it for now. Hope I haven't bored you too much.
Jerry
Today I realized that things are going so fast that I'll never catch up. So, I'll give up on the history, unless I remember something that's relevant.
Since the last post, the insurance company gave approval for the next step, two days days of testing and orientation.
Yesterday, I started the process. 9am until 3pm, I was interviewed, taught how to give myself injections of growth hormone and how to clean the three-headed catheter thing they'll plug into a vein for easy access; it'll be my buddy for the next few months. I had an ekg, echocardiogram, TWENTY tubes of blood taken for testing. To top it all off, a 90 minute talk with a shrink. Whew...I was wiped out after all that.
Today, another 9am start. This was a shorter day, since I've already had a bone marrow biopsy. An hour class on the hemapheresis (blood separating) machine that'll extract my stem cells from my blood and return the rest of the blood to me. A "Pulmonary Function Test" followed, where I impressed the tech with my "exercise-enhanced" lungs. I got to lie down after that while they took x-rays of my entire body, from head to toes including arms, and several angles of each.
I got my schedule for the next few weeks and have an idea of when things will happen.
Assuming the insurance company and others review the test results and I'm still a go, I'll start giving myself growth-hormone shots on November 9th.
On November 12th, they'll knock me out and put in the central line (three-lead venous catheter). Starting November 13th, they start collecting stem cells...4-5 hours a day for about 2 days, sometimes more, sometimes less) until they have enough.
Soon after that, I go into the hospital's ward for compromised immune system patients. I get a single large dose of chemotherapy drugs. Two days after that, they give me back my stem cells, whose job is now to regrow my immune system from scratch.
Oh yeah, in the meantime, my kidney doc's partner (who thinks he's G-d and that I'm HIS patient) left a message to call his office. I did yesterday but he hasn't returned my call yet. And he wonders why I don't like him ;-)
Well, that's it for now. Hope I haven't bored you too much.
Jerry
Friday, October 12, 2007
How I got here
Where do I start? Where did it all begin? Did it start during the MS150 in October '06 when I had my first ever leg cramps while riding my bike? The ongoing cramps since then make me think so.
In February '07, I had 4 days of "unexplained fever" in the 102-104 range. Was that the first sign? In April, I had another bout of fever just like the first. That's when I first went to a doctor. I guess my experiences begin then.
I went to my regular GP. She did some blood tests and found that my blood protein was low. An abdominal ultrasound was next, to rule out any kidney issues. It came back negative so I thought I was in the clear and this would all go away.
She referred me to a hematologist. I called her office and was shocked to hear the phone answered "Atlanta Cancer Care". I asked if I had the right number and was told that it's common for oncologists to also do hematology. This eased my mind. I never even considered that I might have a life-threatening disease.
More lab work was done, more complex tests than earlier. These spotted a "monoclonal light-chain". Of course, I had no idea what that meant but a bone marrow and/or kidney biopsy were discussed. Since the bone marrow was easier to collect, we decided to do that first. I asked what they'd be looking for. Amyloidosis or multiple myeloma, I was told. I knew that a myeloma was a form of cancer so got a "little" nervous.
As luck would have it, the bone marrow biopsy showed neither. So, I went back to being "fat, dumb and happy" again.
A trip to the nephrologist (kidney specialist) was next. There I was told the kidney damage could have easily been caused by taking too much Aleve and other nsaids. So, I stopped my arthritis meds and thought everything would go away. Nope, wrong again.
The nephrologist said it was time for the kidney biopsy. Okay, I'd been through a bone marrow biopsy and it didn't hurt...the bone marrow biopsy had to be worse than the kidney since they had to go through bone as well as some flesh. Wrong yet again.
It turns out that the kidney biopsy requires a "23 hour" hospital stay. That's what they do when your insurance won't cover a full day but it's serious enough that they want to keep an eye on you for awhile.
Into the cat scan room we go. They get me all settled and a nice doctor introduces herself and says she's going to give me the knockout drugs. Well, everything I'd read said these are done with local anesthesia; I'm a MAN so I told her I'd skip the sedative and go with just the local. She looked at me strangely.
Life lesson # 237: If someone offers you drugs before inflicting pain on you, don't EVER say "no".
Everything goes fine and I get back to the hospital room around 4:30, starving. Ten minutes later, lunch shows up...fried chicken and a few sides. I was hungry enough that it tasted good! I finished that meal and a short time later, another lunch comes through the door. Needless to say, I eat that as well.
It's now about 5:30 and dinner time. Yet another meal; I eat it and I'm no longer hungry:-).
Just as that tray is removed, yet another dinner walks in the door! One of the few times in my life I turned down a 'free' meal.
The next morning arrives with breakfast...cereal with milk and french toast. Being lactose intolerant means never drinking real milk...and french toast is usually made with milk as well. When I reminded them that I can't eat this, they offered to have grits and eggs brought up. I ate those and, still hungry, I ate the cereal without the milk.
Before leaving, I was told to call the nephrology office in two weeks to follow up. The appointment was made a few days later. Again, I assumed they'd find nothing and life would go on normally.
About a week later, the hematologist's office (I still don't think of her as an oncologist) calls and wants to see me in a few days. Naive me, I think she misses me and wants to chat. Yeah, right...it never occurred to me that this is how they give bad news.
In her office, she sits me down and explains that I've been diagnosed with amyloidosis and the typical treatments involve chemotherapy! Huh? Where'd that come from? I can't have anything serious wrong with me. I've been taking great care of myself for at least 10 years...and in '99, I began bicycle riding. I'm healthy as a horse; I can get on a bike and ride 100 miles...at least I can ride until the cramps begin.
In February '07, I had 4 days of "unexplained fever" in the 102-104 range. Was that the first sign? In April, I had another bout of fever just like the first. That's when I first went to a doctor. I guess my experiences begin then.
I went to my regular GP. She did some blood tests and found that my blood protein was low. An abdominal ultrasound was next, to rule out any kidney issues. It came back negative so I thought I was in the clear and this would all go away.
She referred me to a hematologist. I called her office and was shocked to hear the phone answered "Atlanta Cancer Care". I asked if I had the right number and was told that it's common for oncologists to also do hematology. This eased my mind. I never even considered that I might have a life-threatening disease.
More lab work was done, more complex tests than earlier. These spotted a "monoclonal light-chain". Of course, I had no idea what that meant but a bone marrow and/or kidney biopsy were discussed. Since the bone marrow was easier to collect, we decided to do that first. I asked what they'd be looking for. Amyloidosis or multiple myeloma, I was told. I knew that a myeloma was a form of cancer so got a "little" nervous.
As luck would have it, the bone marrow biopsy showed neither. So, I went back to being "fat, dumb and happy" again.
A trip to the nephrologist (kidney specialist) was next. There I was told the kidney damage could have easily been caused by taking too much Aleve and other nsaids. So, I stopped my arthritis meds and thought everything would go away. Nope, wrong again.
The nephrologist said it was time for the kidney biopsy. Okay, I'd been through a bone marrow biopsy and it didn't hurt...the bone marrow biopsy had to be worse than the kidney since they had to go through bone as well as some flesh. Wrong yet again.
It turns out that the kidney biopsy requires a "23 hour" hospital stay. That's what they do when your insurance won't cover a full day but it's serious enough that they want to keep an eye on you for awhile.
My first hospital stay
I got to the hospital at 11am for a 1pm start time...which got pushed to 3pm. Meanwhile, no food since midnight has got me just a little hungry. At first it was to be done using sonography...they got me into the room and THEN decided to do it with a cat scan instead; no explanation was given.Into the cat scan room we go. They get me all settled and a nice doctor introduces herself and says she's going to give me the knockout drugs. Well, everything I'd read said these are done with local anesthesia; I'm a MAN so I told her I'd skip the sedative and go with just the local. She looked at me strangely.
Life lesson # 237: If someone offers you drugs before inflicting pain on you, don't EVER say "no".
Everything goes fine and I get back to the hospital room around 4:30, starving. Ten minutes later, lunch shows up...fried chicken and a few sides. I was hungry enough that it tasted good! I finished that meal and a short time later, another lunch comes through the door. Needless to say, I eat that as well.
It's now about 5:30 and dinner time. Yet another meal; I eat it and I'm no longer hungry:-).
Just as that tray is removed, yet another dinner walks in the door! One of the few times in my life I turned down a 'free' meal.
The next morning arrives with breakfast...cereal with milk and french toast. Being lactose intolerant means never drinking real milk...and french toast is usually made with milk as well. When I reminded them that I can't eat this, they offered to have grits and eggs brought up. I ate those and, still hungry, I ate the cereal without the milk.
Before leaving, I was told to call the nephrology office in two weeks to follow up. The appointment was made a few days later. Again, I assumed they'd find nothing and life would go on normally.
After the hospital
About a week later, the hematologist's office (I still don't think of her as an oncologist) calls and wants to see me in a few days. Naive me, I think she misses me and wants to chat. Yeah, right...it never occurred to me that this is how they give bad news.
In her office, she sits me down and explains that I've been diagnosed with amyloidosis and the typical treatments involve chemotherapy! Huh? Where'd that come from? I can't have anything serious wrong with me. I've been taking great care of myself for at least 10 years...and in '99, I began bicycle riding. I'm healthy as a horse; I can get on a bike and ride 100 miles...at least I can ride until the cramps begin.
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