Sometimes you just can't win. I truly believed that I would be headed home by now, but no, here I am in the most uncomfortable hotel suite I have ever stayed in. The bed is hard as a rock, so I wake up each morning with a backache and both hips aching. The sofa and chair are broken down and impossible to sit or lay on for more than about 15 minutes. I have had to resort to a heating pad to get my skeleton to work in the morning.
Today is transplant plus 46. That means I have been in Denver for 56 days. Last week my doctor told me he would probably keep me here until AT LEAST transplant plus 60. That means I won't be in my comfy recliner for the Super Bowl, so I have set my sights on the Daytona 500. If he hasn't set me free by then, I'm going to just run away.
I go to the clinic every Monday, Wednesday and Friday. They draw my blood and run my labs and then either a doctor or a nurse practitioner comes in and asks me the same questions: are you have any vomitting, nausea or diharrea? do you have any rashes? are your legs swelling? how's your appetite? how's your vision? I dutifully answer honestly each time (no, no, yes, it sucks, blurry). It's so boring that I'm thinking of creating some real whoppers to make them sit up and notice how well I am doing.
I have had to receive two units of red blood cells each of the last three Fridays. Between the clinic routine and the transfusion, it eats up the entire day. But then, it's not like I have places to go and people to see.
I miss everything about my life, my home, my kids, my grandkids, my friends, my extended family, my office family, my office . . . maybe even the wind --- how sick is that?
All I can do is fire up the heating pad and count the days, transplant plus 47, transplant plus 48, transplant plus 50 . . . I can't count much higher than that, so I better be Cheyenne bound by then.
Thank you all for the cards, phone calls, prayers and overall support. I helps so much to know there are so many people who care.
Sunday, January 25, 2009
Saturday, January 3, 2009
New Year's First . . . Now Christmas!
I'm sure it's not horribly uncommon for some families to celebrate Christmas sometime after New Year's, but this is the first time for our family. Every other year we have two Christmases . . . one on Christmas Day and another sometime between Christmas and New Year's when my oldest son and his family return from his wife's home in Huelett (Wyoming for all of you both in state and out who might not know where Huelett is).
This year, Christmas Day was spent in my little hospital room --- no tree (real or fake) allowed, no fancily wrapped gifts and a choice of crappy ham or crappy pork for dinner. Steve and Dylan did drive down for an hour or so and that was pretty much that.
Now New Year's Day was a completely different story. At transplant plus 22 days, I was released from the hospital and "transitioned" to a long-stay hotel suite not far from the cancer clinic or the hospital. Steve, Dylan and St. Gwen came down and moved me and left Dylan behind as my "primary" caretaker. He's doing a fine job and it has been a pleasure to spend some one-on-one time with him (even though he beat me at Scrabble AGAIN last night).
Tomorrow will be the Lathrop family Christmas. My son Jake, wife Sara, children Jameson (3) and Madeline (almost 1 year) and my daughter, Rayme, husband Rich, children Emmaray (just turned 4) and Hayden (2) will come down to Denver and we will open presents, eat something easy and simple, and celebrate another year of living.
The weeks ahead will be filled with trips to the clinic every other day where I will try to convince Dr. Rifkin at every visit that I am ready to go back to Cheyenne under the care of Dr. Batezini. I'm giving him three more weeks and he's still singing that tune about up to 100 days. Want to place a wager on who wins?
Even though this phase of my treatment was no walk in the park, I am doing very well. Each day I get a little more appetite back and a little more strength. I can't stand all the idleness, but I don't yet have the wherewithall to focus on projects, reading, watching tv, or doing much more than taking short walks and long naps.
I hope everyone had a Merry Christmas and that their New Year got off to as great a start as mine!
This year, Christmas Day was spent in my little hospital room --- no tree (real or fake) allowed, no fancily wrapped gifts and a choice of crappy ham or crappy pork for dinner. Steve and Dylan did drive down for an hour or so and that was pretty much that.
Now New Year's Day was a completely different story. At transplant plus 22 days, I was released from the hospital and "transitioned" to a long-stay hotel suite not far from the cancer clinic or the hospital. Steve, Dylan and St. Gwen came down and moved me and left Dylan behind as my "primary" caretaker. He's doing a fine job and it has been a pleasure to spend some one-on-one time with him (even though he beat me at Scrabble AGAIN last night).
Tomorrow will be the Lathrop family Christmas. My son Jake, wife Sara, children Jameson (3) and Madeline (almost 1 year) and my daughter, Rayme, husband Rich, children Emmaray (just turned 4) and Hayden (2) will come down to Denver and we will open presents, eat something easy and simple, and celebrate another year of living.
The weeks ahead will be filled with trips to the clinic every other day where I will try to convince Dr. Rifkin at every visit that I am ready to go back to Cheyenne under the care of Dr. Batezini. I'm giving him three more weeks and he's still singing that tune about up to 100 days. Want to place a wager on who wins?
Even though this phase of my treatment was no walk in the park, I am doing very well. Each day I get a little more appetite back and a little more strength. I can't stand all the idleness, but I don't yet have the wherewithall to focus on projects, reading, watching tv, or doing much more than taking short walks and long naps.
I hope everyone had a Merry Christmas and that their New Year got off to as great a start as mine!
Thursday, December 11, 2008
Update from Hotel Deja Vu
Actually, I am in room 3406 at Presbyterian/St. Luke's Hospital in Denver. But . . . for all practical purposes it could be Cheyenne Regional Medical Center or any other institution occupied by nurses creeping silently by in their crocs and tennies, patients roaming the hallways accompanied by a very quiet, skinny friend and the food and nutrition workers who roll their carts up and down the uneven surfaces of the hallways.
My particular room is neither large nor small. It is neither nice nor dowdy. It is a simple box with windows on one side. The view is of a concrete courtyard and my windows are precisely disected by a yellow refuse tube through which scads of old ceiling tiles, sheetrock and other building materials shoot as the floor above this one is being remodeled.
I finished that first chemo drug on Friday last week and then the second one started. It was called cytoxin. I know how it earned its name. It is highly toxic and after the first dose, the patient has been mutated into a one-eyed, gagging, puking, moaning monster. Not having partied too hard since college (exception WACO - Casper - Jerry Orr, Susan and I shot for shot) I had forgotten the myriad of flourescent colors that enhance otherwise mustard brown bile.
A continuous regimen of anti-nausea drugs has kept the cycloptic puker at bay.
My "birthday" (the day I received the cells from my donor) was at 1:00 a.m. on Wednesday, December 10, 2009. I knew ahead of time that my donor was a 22 year old male. I was worried for quite a while that he would share things in common with my 22 year old son --- particularly a love for independent punk music. Well, the cellls were flown in from Germany, so my taste for music might lean a little more toward techno and my beer of choice may go from a good old red beer to some "dark lager."
One of my coping mechanisms is to visualize with games. When I was having the chemo, I was playing pac man. The chemo were the little men chomping up all my bad cells. Now I am playing tetris where I watch as all the bone marrow building blocks fit down into my bones to settle as a well-functioning puzzle. I also visualize that those cells are giving my body the wherewithall to leave this experience looking like Heidi Klum. The mind can be a dangerous thing,
All in all things are going well. My biggest complaint is being tired. I kept saying I would need a nice, long rest after the election and so it seems I am in the place to get it.
As always, thank you all for your positive thoughts, prayers, and good vibrations. Knowing you are out there pulling for me helps me keep my mission at the forefront of my mind.
My particular room is neither large nor small. It is neither nice nor dowdy. It is a simple box with windows on one side. The view is of a concrete courtyard and my windows are precisely disected by a yellow refuse tube through which scads of old ceiling tiles, sheetrock and other building materials shoot as the floor above this one is being remodeled.
I finished that first chemo drug on Friday last week and then the second one started. It was called cytoxin. I know how it earned its name. It is highly toxic and after the first dose, the patient has been mutated into a one-eyed, gagging, puking, moaning monster. Not having partied too hard since college (exception WACO - Casper - Jerry Orr, Susan and I shot for shot) I had forgotten the myriad of flourescent colors that enhance otherwise mustard brown bile.
A continuous regimen of anti-nausea drugs has kept the cycloptic puker at bay.
My "birthday" (the day I received the cells from my donor) was at 1:00 a.m. on Wednesday, December 10, 2009. I knew ahead of time that my donor was a 22 year old male. I was worried for quite a while that he would share things in common with my 22 year old son --- particularly a love for independent punk music. Well, the cellls were flown in from Germany, so my taste for music might lean a little more toward techno and my beer of choice may go from a good old red beer to some "dark lager."
One of my coping mechanisms is to visualize with games. When I was having the chemo, I was playing pac man. The chemo were the little men chomping up all my bad cells. Now I am playing tetris where I watch as all the bone marrow building blocks fit down into my bones to settle as a well-functioning puzzle. I also visualize that those cells are giving my body the wherewithall to leave this experience looking like Heidi Klum. The mind can be a dangerous thing,
All in all things are going well. My biggest complaint is being tired. I kept saying I would need a nice, long rest after the election and so it seems I am in the place to get it.
As always, thank you all for your positive thoughts, prayers, and good vibrations. Knowing you are out there pulling for me helps me keep my mission at the forefront of my mind.
Tuesday, December 2, 2008
Over the River and Through the Woods
Thanksgiving has come and gone. Dylan has been put on an airplane bound for Minneapolis. And I have checked in to Presbyterian/St. Luke's Hospital in Denver. Yesterday was a long . . . and hungry . . . day. No food or drink from midnight on Sunday until nearly 6:00 last night. That was a requirement for the medications used during the installation of a three-lumen catheter in the upper right side of my chest. The procedure began at about 3:00 in the afternoon and I was in my room on the third floor by a little after 4:00 p.m.
Several shots of lidocaine were administered prior to making the incision(s) necessary to install the gizmo. By 8:00 last night, it had still not worn off completely. It was a lot like having one side of your face numb after going to the dentist for a filling. Only this was my right boob that was dead weight and dragging the floor.
At 6:00 this morning, I received my first dose of the first chemotherapy drug. It is called "busulfan" and I will receive it every 6 hours for the first four days. As with my other experiences with chemo, I have tolerated this rather well.
At about 3:15 this afternoon I was surprised by a spinal tap or lumbar puncture. The purpose was to make absolutely certain there were no leukemia cells in my spinal fluid. A dose of some type of chemo (methadexadrone, maybe) was given as a prophylactic measure. If any bad cells still persist, more of that medication will be administered.
The one big plus of being here is that the food is soooo much better than at CRMC in Cheyenne. I have had chicken, fish, and even liver and oinions and each of them was actually good. As far as the liver an onions, it was not a standard meal today at lunch, it was the chef's selection and I had to specifically ask for it. Yes, I am one of the few people in the world that LIKES liver and onions. It was not as good as what my husband cooks, but it was more than acceptable.
The staff here, like at CRMC, is very friendly, caring, and good at their jobs. I miss my 8th floor angels (Kim, Heather, Angela, Cat, Stephanie, Mary, Jackson, and the rest) but I know I am in good hands here as well. All of the docs so far have been male, so Dr. Batezini's reputation as the most beautiful female oncologist is still intact.
Several shots of lidocaine were administered prior to making the incision(s) necessary to install the gizmo. By 8:00 last night, it had still not worn off completely. It was a lot like having one side of your face numb after going to the dentist for a filling. Only this was my right boob that was dead weight and dragging the floor.
At 6:00 this morning, I received my first dose of the first chemotherapy drug. It is called "busulfan" and I will receive it every 6 hours for the first four days. As with my other experiences with chemo, I have tolerated this rather well.
At about 3:15 this afternoon I was surprised by a spinal tap or lumbar puncture. The purpose was to make absolutely certain there were no leukemia cells in my spinal fluid. A dose of some type of chemo (methadexadrone, maybe) was given as a prophylactic measure. If any bad cells still persist, more of that medication will be administered.
The one big plus of being here is that the food is soooo much better than at CRMC in Cheyenne. I have had chicken, fish, and even liver and oinions and each of them was actually good. As far as the liver an onions, it was not a standard meal today at lunch, it was the chef's selection and I had to specifically ask for it. Yes, I am one of the few people in the world that LIKES liver and onions. It was not as good as what my husband cooks, but it was more than acceptable.
The staff here, like at CRMC, is very friendly, caring, and good at their jobs. I miss my 8th floor angels (Kim, Heather, Angela, Cat, Stephanie, Mary, Jackson, and the rest) but I know I am in good hands here as well. All of the docs so far have been male, so Dr. Batezini's reputation as the most beautiful female oncologist is still intact.
Thursday, November 13, 2008
Let the Games Begin!
The election is over. Had a recount. Might have a challenge filed. Fabulous turnout (103%). Anyone freaking out over that stat? It's totally real because Wyoming is one of about eight states that allows election day voter registration.
So, now on to the next chapter in life . . . stem cell transplant. I received word yesterday that I will be admitted to Presbyterian/St. Luke's Hospital in mid-town Denver on November 30 or December 1. Approximately 7 or 8 days later, I will receive the stem cells from my donor. I know nothing about him other than he, too, ate dirt as a kid. Apparently there is some virus that is commonly found in dirt and I needed a donor who had also had that virus, so I am fortunate there are still people in the world who weren't carefully watched as children.
At first blush, the 30th of November seems a long way into the future, but I have to focus on the reality that I have only 13 days to accomplish a long list of back-burnered "to dos." Like cleaning out those closets that have been on that list for at least 5 years . . . filing all the bills from the early 1990s that have been cluttering up my home office . . . ironing all the items that have been hanging on my gas pipe in the basement for at least 3 years . . .
Seriously, it's not QUITE that bad, but bad enough. I have been at the office every day for the past four weeks, so there really is a lot of deferred cleaning, laundry and ironing to get caught up. Husband Steve, bless his heart, has done a fairly good job of keeping the top layer of dust from building up too much and has cooked some wonderful meals during these past weeks. I wuold like to smuggle him into the hospital as my personal chef, but I'm pretty sure that will not be possible.
I will find out what all will be possible next Wednesday. I am scheduled to have my final consultation and consent meting with Dr. Rifkin. I think at that time I get a tour of the isolation area at the hospital and find out their do's and don'ts. I just wonder if they are ready for my list of do's and don'ts . . . like do feed me decent food . . . don't wake me up at 2:00 a.m. just to take my blood pressure and temperature . . . do let me have my computer . . . don't interrupt a telephone meeting just to ask how "we" are doing . . . and above all else, DON'T TREAT ME LIKE AN INVALID!
I am woman, hear me roar.
So, now on to the next chapter in life . . . stem cell transplant. I received word yesterday that I will be admitted to Presbyterian/St. Luke's Hospital in mid-town Denver on November 30 or December 1. Approximately 7 or 8 days later, I will receive the stem cells from my donor. I know nothing about him other than he, too, ate dirt as a kid. Apparently there is some virus that is commonly found in dirt and I needed a donor who had also had that virus, so I am fortunate there are still people in the world who weren't carefully watched as children.
At first blush, the 30th of November seems a long way into the future, but I have to focus on the reality that I have only 13 days to accomplish a long list of back-burnered "to dos." Like cleaning out those closets that have been on that list for at least 5 years . . . filing all the bills from the early 1990s that have been cluttering up my home office . . . ironing all the items that have been hanging on my gas pipe in the basement for at least 3 years . . .
Seriously, it's not QUITE that bad, but bad enough. I have been at the office every day for the past four weeks, so there really is a lot of deferred cleaning, laundry and ironing to get caught up. Husband Steve, bless his heart, has done a fairly good job of keeping the top layer of dust from building up too much and has cooked some wonderful meals during these past weeks. I wuold like to smuggle him into the hospital as my personal chef, but I'm pretty sure that will not be possible.
I will find out what all will be possible next Wednesday. I am scheduled to have my final consultation and consent meting with Dr. Rifkin. I think at that time I get a tour of the isolation area at the hospital and find out their do's and don'ts. I just wonder if they are ready for my list of do's and don'ts . . . like do feed me decent food . . . don't wake me up at 2:00 a.m. just to take my blood pressure and temperature . . . do let me have my computer . . . don't interrupt a telephone meeting just to ask how "we" are doing . . . and above all else, DON'T TREAT ME LIKE AN INVALID!
I am woman, hear me roar.
Tuesday, November 4, 2008
The Twilight Zone Draws Nearer
Election Day is finally here. It's almost 2:30 in the AM and I haven't been able to sleep for the last two hours, so I said to myself, "Self, get on up and do something constructive." Instead, I decided to post a little update.
A couple of weeks ago I underwent all the necessary pre-transplant tests and all was well except my thyroid. I guess it's a little sluggish. (AHA! So there is a reason I have an a$$ the size of Texas!) So far, two potential donors have been tested and eliminated for not having had some particular virus. BUT . . . yesterday I received the email that the donor they "have been looking for" has been found.
The potential dates for the actual stem cell transplant are November 24, December 1, or December 8. The part of me that has been working 10 hours a day during the week and several hours on the wekends for the past several weeks is thinking the sooner, the better . . . I need a nice, long rest. The part of me that wants all the ironing caught up, Christmas presents bought and wrapped, and the house detail cleaned is thinking WHOA! . . . too soon.
I thank the good Lord for giving me these past 10 or 11 months during which I have been able to return to life as it was before leukemia. And I pray to Him to give me the strength to get through the next few months with dignity and courage. But, most of all, I beg the election gods for no recounts, no challenges, no equipment failures, no voters with black helicopters circling their heads and most of all, to be in bed by 11:00 tonight.
I hope all who read this get out and vote today.
A couple of weeks ago I underwent all the necessary pre-transplant tests and all was well except my thyroid. I guess it's a little sluggish. (AHA! So there is a reason I have an a$$ the size of Texas!) So far, two potential donors have been tested and eliminated for not having had some particular virus. BUT . . . yesterday I received the email that the donor they "have been looking for" has been found.
The potential dates for the actual stem cell transplant are November 24, December 1, or December 8. The part of me that has been working 10 hours a day during the week and several hours on the wekends for the past several weeks is thinking the sooner, the better . . . I need a nice, long rest. The part of me that wants all the ironing caught up, Christmas presents bought and wrapped, and the house detail cleaned is thinking WHOA! . . . too soon.
I thank the good Lord for giving me these past 10 or 11 months during which I have been able to return to life as it was before leukemia. And I pray to Him to give me the strength to get through the next few months with dignity and courage. But, most of all, I beg the election gods for no recounts, no challenges, no equipment failures, no voters with black helicopters circling their heads and most of all, to be in bed by 11:00 tonight.
I hope all who read this get out and vote today.
Tuesday, September 9, 2008
Getting Ready for the Second Go 'Round
Have the last six months been the dream or the reality? With the exception of the routine blood tests and periodic bone marrow biopsies, life has seemed almost normal. I get up, get ready, go to work. I come home, eat, and go to bed. Can anything be better than that?
Actually, life has been pretty darned good. There have been lots of family gatherings with the children and grandchildren as well as extended family. The young adventurer, Dylan, even returned from Minneapolis for a couple of weeks this summer. His visit was a true joy with the exception of what he left behind. Dylan --- exactly WHO spilled the mocha, java, moo latte, with extra whipped cream or whatever in the back seat of my vehicle? Would the words "drive the wreck or walk" get your attention for your next visit?
The future, I'm afraid, is not so rosy. My last two biopsies have turned up a new condition, myelodysplasia syndrome --- not quite as nasty as the acute myeologenous leukemia, but nasty enough that I am facing a stem cell transplant. The truly ugly part is that it looks as though the stem cells will have to come from an unrelated donor. Not that I mind getting an infusion of stem cells from a 40ish red blooded American male, it's just that the possible complications are greater than with a transplant of one's own stem cells.
Nothing will get too far underway until after November 4th. I absolutely MUST be able to stay the course at work and complete my duties as chief election officer for the County. The upcoming election is too important and will be too exciting to sit it out in a drafty hospital gown while reclining in a less than Temperpedic bed surfing limited cable channels.
If there is anyone out there in the blue nowhere who still reads this, I will try to be more faithful about writing in the coming weeks and I will make sure I use this as a means to keep friends and loved ones posted about the transplant process and progress.
Actually, life has been pretty darned good. There have been lots of family gatherings with the children and grandchildren as well as extended family. The young adventurer, Dylan, even returned from Minneapolis for a couple of weeks this summer. His visit was a true joy with the exception of what he left behind. Dylan --- exactly WHO spilled the mocha, java, moo latte, with extra whipped cream or whatever in the back seat of my vehicle? Would the words "drive the wreck or walk" get your attention for your next visit?
The future, I'm afraid, is not so rosy. My last two biopsies have turned up a new condition, myelodysplasia syndrome --- not quite as nasty as the acute myeologenous leukemia, but nasty enough that I am facing a stem cell transplant. The truly ugly part is that it looks as though the stem cells will have to come from an unrelated donor. Not that I mind getting an infusion of stem cells from a 40ish red blooded American male, it's just that the possible complications are greater than with a transplant of one's own stem cells.
Nothing will get too far underway until after November 4th. I absolutely MUST be able to stay the course at work and complete my duties as chief election officer for the County. The upcoming election is too important and will be too exciting to sit it out in a drafty hospital gown while reclining in a less than Temperpedic bed surfing limited cable channels.
If there is anyone out there in the blue nowhere who still reads this, I will try to be more faithful about writing in the coming weeks and I will make sure I use this as a means to keep friends and loved ones posted about the transplant process and progress.
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