I have spent most of my time being thankful this weekend. A long time ago a friend told me to make a gratitude list with 100 things on it. She suggested this as an antidote to feeling sorry for myself. I started the list with my house, my car, my kids, my job and realized my needs were met. As I continued the list I started listing my friends and my family. It was easy to get to 100 items. If I sat down to list the things I am grateful for today, just my scouting support group would number over 100.
I have been a "hanger-on" in Boy Scout Troop 91 for many years. We define hanger-on as a parent who keeps coming to meetings and activities after his or her son stops coming.
While I was in the hospital I received cards every single day. And every day there was one or two or more from scouts and their families. Since the transplant, the troop has been sending me photos of themselves. Special pictures of members holding signs that say "We miss you." and "Get well." The pictures are of kids and adults [and 2 dogs] and have been the highlight of my weeks.
Thank you Troop 91 Scouts and Scouters!
I have also worked in scouting at the District level and many of those folks' names appear regularly in my email, blog posts and on cards. Some of the best jokes and some of the biggest groaners, but always good for a laugh.
I am especially thankful to the folks who stepped up to help my Venturing Crew when I fell off the radar. Terry Dodson and Bobanne Kalkofen accompanied 4 teenagers to Rocky Mountain High Adventure Base this summer. Mark and Sarah Curfman have taken responsibility for organizing the crew for meetings and monthly activities.
My fellow Wood Badgers in the Owl Patrol and on the 2004 staff have been big boosters. Lots of phone calls and visits (some in the black hole of "they did?") emails, blog posts and cards. It will be a big whoooooooooooooop-ti-do when we gather again.
I'm grateful for all of you. Those who have called, emailed or visited. Those who have prayed, those who have just thought about me. Thank you.
Saturday, November 29, 2008
Wednesday, November 26, 2008
"We will tell you when." S. Ganguly
Day before Thanksgiving. The house smells of garlic from the preparations. The garlic has completely overtaken the apple pie aroma from this morning. Dad and I took the dogs for a short walk because the weather is so beautiful. I am looking forward to eating a big dinner tomorrow. Since I no longer have to consume 100g of protein my calorie intake dropped 600-800 calories a day. I lost one pound in 4 days, and tomorrow I shall make up for it with second helpings of pumpkin pie and mashed potatoes and gravy.
Yesterday was a very long day at the clinic. I had a sonogram of my liver, that I had expected to be a CT Scan. "Doesn't matter, you shouldn't have eaten," snapped the technician. (I suspect she had missed her own breakfast.) She showed me the black spot on the monitor that represented the peanut butter toast I had consumed on the road to the clinic.
Nothing prepared me for her disposition or the sonogram. Too bad. boo hoo. She must have managed to get some pictures despite the breakfast because Ganguly had a report.
Ganguly arrives in my room and reports "You have gallstones. The gallbladder is going to have to come out. But not now. You will have to decide that later." A welcome respite since I've never had a single symptom of gallstones and surely have enough going on in my body at the moment.
Next he says "Your liver is inflamed. I am looking at your medications. I want to take you off of everything unnecessary. Like Effexor. You do not look like a depressed person to me! You do not need Effexor!" I laughed back at him that I'm taking it for hot flashes not depression. He replies in his own crisp accent "you will not have those now that you have your brother's blood! ha ha ha ha" Then quickly tells my mother "that is just a joke...."
We continued the discussion of medication. I was willing to give up the Effexor, the sleeping pill, the antibiotic. I was game for all of it. Then he says "I just have to see your blood results." DOH I think to myself. I told him I was a new grandmother. "Congratulaaaations!" then the crisp "We will tell you when you can be around the baby."
When he came back with the blood results he started with "Can you have a bone marrow today? Your white count is down for some reason. I want to check how much is you and how much is your brother." I told him yes and reminded him that Wendy had just drawn blood to check that. "Not the same. That is the blood. We are going right to the factory."
On the other hand the liver was good. "Don't change a thing" he trumpeted. "I will write your prescriptions." So happily, the Effexor is still working its magic on the hot flashes.
So I had a bone marrow biopsy. Mary Burkhardt performed the procedure and she gets high marks for painless, during and after. Of course Jenny was as always, the nurse in the room and sorry to report to you Walt that she would now like to meet Mark! It was supposed to be just an aspiration but the white cell count apparently skewed the smears so she went back in and got the bone chip.
Finally I left the clinic. The first appointment was at 8am and we did not get home until about 3pm. By then I was seriously hungry and it had been hours since I ate. I considered reporting this to the sonogram tech but decided to leave well enough alone.
The dropping white cell count means I must be careful of visitors. sigh. I return to the clinic on Monday and I am optimistic that the white count will be up.
Meanwhile I'm making my list of questions for the next visit. I'm going to rephrase them, to-wit:
1. How long til I must stop driving?
2. When should I not fly?
3. What is the time frame for avoiding babies and children?
4. How much less wine should I drink with my dinner?
Yesterday was a very long day at the clinic. I had a sonogram of my liver, that I had expected to be a CT Scan. "Doesn't matter, you shouldn't have eaten," snapped the technician. (I suspect she had missed her own breakfast.) She showed me the black spot on the monitor that represented the peanut butter toast I had consumed on the road to the clinic.
Nothing prepared me for her disposition or the sonogram. Too bad. boo hoo. She must have managed to get some pictures despite the breakfast because Ganguly had a report.
Ganguly arrives in my room and reports "You have gallstones. The gallbladder is going to have to come out. But not now. You will have to decide that later." A welcome respite since I've never had a single symptom of gallstones and surely have enough going on in my body at the moment.
Next he says "Your liver is inflamed. I am looking at your medications. I want to take you off of everything unnecessary. Like Effexor. You do not look like a depressed person to me! You do not need Effexor!" I laughed back at him that I'm taking it for hot flashes not depression. He replies in his own crisp accent "you will not have those now that you have your brother's blood! ha ha ha ha" Then quickly tells my mother "that is just a joke...."
We continued the discussion of medication. I was willing to give up the Effexor, the sleeping pill, the antibiotic. I was game for all of it. Then he says "I just have to see your blood results." DOH I think to myself. I told him I was a new grandmother. "Congratulaaaations!" then the crisp "We will tell you when you can be around the baby."
When he came back with the blood results he started with "Can you have a bone marrow today? Your white count is down for some reason. I want to check how much is you and how much is your brother." I told him yes and reminded him that Wendy had just drawn blood to check that. "Not the same. That is the blood. We are going right to the factory."
On the other hand the liver was good. "Don't change a thing" he trumpeted. "I will write your prescriptions." So happily, the Effexor is still working its magic on the hot flashes.
So I had a bone marrow biopsy. Mary Burkhardt performed the procedure and she gets high marks for painless, during and after. Of course Jenny was as always, the nurse in the room and sorry to report to you Walt that she would now like to meet Mark! It was supposed to be just an aspiration but the white cell count apparently skewed the smears so she went back in and got the bone chip.
Finally I left the clinic. The first appointment was at 8am and we did not get home until about 3pm. By then I was seriously hungry and it had been hours since I ate. I considered reporting this to the sonogram tech but decided to leave well enough alone.
The dropping white cell count means I must be careful of visitors. sigh. I return to the clinic on Monday and I am optimistic that the white count will be up.
Meanwhile I'm making my list of questions for the next visit. I'm going to rephrase them, to-wit:
1. How long til I must stop driving?
2. When should I not fly?
3. What is the time frame for avoiding babies and children?
4. How much less wine should I drink with my dinner?
Tuesday, November 25, 2008
This is Harrison. I received the photo this morning while I was at the clinic. Somehow I wasn't on the "A list" for pictures. But these little things can be forgiven of an excited new parent. I just got home from an 8am appt at the clinic. I'll talk about me tomorrow.
Meanwhile, welcome the newest Cubs fan to the family.
Monday, November 24, 2008
Harrison has arrived
Harrison made his entrance this afternoon about 3:30, weighing in at 8# 1 oz, and being 21" long. I wish I had a photo to post but I have seen him on the video and he is a beautiful baby. Annie is fine and Conor is thrilled. As am I.
I finally called Cheryl, Annie's mom, this afternoon. I knew she was in the waiting room at the hospital. Then Conor sent me a text, and said "tell Cheryl he's almost crowning" I shot back "Rnt U coaching?" He said "yes! but take breaks between contractions." I called Cheryl who swore she had the worst situation sitting in the waiting room outside. Worse than me sitting in Kansas City. I'm inclined to agree with her, especially when I figured out Conor was texting news to me to relay to her.
But Cheryl called from the room a few minutes later to tell me he had arrived and all was well. Then Conor called. It was exciting to hear the baby cry. And a huge relief to hear everyone was ok.
This evening we had a video session and Mom & Dad and I watched him and chatted with Conor & Annie and Cheryl. Conor has a Cubs hat on Harrison. For those who wonder, his hair is light but not blonde. About the color of Conor's hair.
So tomorrow, back to the clinic. CT scan of the liver and the usual blood work. I do not expect to have the Walt/Cathi DNA ratio until next week.
Grandma Cathi
I finally called Cheryl, Annie's mom, this afternoon. I knew she was in the waiting room at the hospital. Then Conor sent me a text, and said "tell Cheryl he's almost crowning" I shot back "Rnt U coaching?" He said "yes! but take breaks between contractions." I called Cheryl who swore she had the worst situation sitting in the waiting room outside. Worse than me sitting in Kansas City. I'm inclined to agree with her, especially when I figured out Conor was texting news to me to relay to her.
But Cheryl called from the room a few minutes later to tell me he had arrived and all was well. Then Conor called. It was exciting to hear the baby cry. And a huge relief to hear everyone was ok.
This evening we had a video session and Mom & Dad and I watched him and chatted with Conor & Annie and Cheryl. Conor has a Cubs hat on Harrison. For those who wonder, his hair is light but not blonde. About the color of Conor's hair.
So tomorrow, back to the clinic. CT scan of the liver and the usual blood work. I do not expect to have the Walt/Cathi DNA ratio until next week.
Grandma Cathi
Sunday, November 23, 2008
Waiting for baby
Conor and Annie are going to the hospital at 10:30 tonight to start the birthing process. The doctor hopes they get some sleep tonight to prepare for the big day tomorrow. Annie's mother has been in Chicago since mid-week helping finish preparations. She will be staying for a couple of weeks to get Harrison and Annie settled and happy at home.
I had a long chat with Conor today and I feel a bit weepy confronting the event of a grandbaby via web cam. I can't believe that baby is going to be born without me there! But I am here and I am getting healthier by the day and focusing on the long term brings me back to my task at hand.
I finished a baby quilt and sent it off this week. Conor and Annie report that it looks good in the room. A few weeks ago I put on my mask and boldly entered the quilt shop with paint chips from the baby's room to choose the fabric. There were only 2-3 other people in the shop including the staff, but I still felt very brave and daring in such a public place.
I have heard the story often of when I was born. My parents were still in college at K-State and I was born in Manhattan. My two grandmothers lived in Winfield in south central Kansas and my then single Uncle Wendell was designated to drive the ladies to Manhattan. Wendell reports that is the only time he ever drove the car with two old ladies when they wanted to go faster. He says "I could drive as fast as I wanted and nobody complained. They were both in a big hurry!"
And when Conor was born some years later in Winfield, my grandparents were visiting the next morning before the sun came up. Grandma had a set of gifts all ready for any event, and we got the boy collection. My parents arrived for his homecoming. I remember Dad marvelling "this baby is a perfect little person. 10 fingers, 10 toes, everything is there, it's just little."
Now in this age of technology we are waiting for Harrison to arrive and I will be able to see him "live" using the internet. But he will still be a "perfect little person, 10 fingers, ....."
Cathi
I had a long chat with Conor today and I feel a bit weepy confronting the event of a grandbaby via web cam. I can't believe that baby is going to be born without me there! But I am here and I am getting healthier by the day and focusing on the long term brings me back to my task at hand.
I finished a baby quilt and sent it off this week. Conor and Annie report that it looks good in the room. A few weeks ago I put on my mask and boldly entered the quilt shop with paint chips from the baby's room to choose the fabric. There were only 2-3 other people in the shop including the staff, but I still felt very brave and daring in such a public place.
I have heard the story often of when I was born. My parents were still in college at K-State and I was born in Manhattan. My two grandmothers lived in Winfield in south central Kansas and my then single Uncle Wendell was designated to drive the ladies to Manhattan. Wendell reports that is the only time he ever drove the car with two old ladies when they wanted to go faster. He says "I could drive as fast as I wanted and nobody complained. They were both in a big hurry!"
And when Conor was born some years later in Winfield, my grandparents were visiting the next morning before the sun came up. Grandma had a set of gifts all ready for any event, and we got the boy collection. My parents arrived for his homecoming. I remember Dad marvelling "this baby is a perfect little person. 10 fingers, 10 toes, everything is there, it's just little."
Now in this age of technology we are waiting for Harrison to arrive and I will be able to see him "live" using the internet. But he will still be a "perfect little person, 10 fingers, ....."
Cathi
Saturday, November 22, 2008
Week of the girlfriends
I have had so much fun this week with my different companions that I haven't posted much. It's been exciting to have a social life outside of the clinic personnel. I am crazy about the folks at the clinic yet aware that they are not my 'real' life. I'm posting a picture of me with Robbie and Carla so you can see my "new do." (That's Carla on the left and Robbie in the center.) I can't say I'm crazy about it, but I'm comfortable with it. My hair seems to be coming in exactly the same as it was before it went out.
In fact, if you really want to get to know your hair, shave your head. You can see every single individual gray hair as they come back in. The cowlicks and growth patterns become apparent. Right now it looks like I have a permanent sleep disorder on the right side of my head. The hair seems to grow straight up toward the top of my head resulting in an off center peak something like what Conor used to spend hours creating along the part in his hair, using mustache wax. I don't know whether to treat it with mousse or creme rinse so as they say, no decision is still a decision.
Bridget took me to the clinic yesterday and was treated to the one and only Dr. Ganguly. He dismissed the remaining rash as dry skin, informed me that "we will tell you" referring to when the PICC line can come out, confirmed the "no dogs for 100 days" and inquired why I was still eating 100 g of protein per day. He went off to find Melinda, the nutritionist, and returned to tell me I could stop eating protein bars. (This when I finally decided on the tastiest bars for the least cost. If you find yourself wondering, shoot me an e-mail.) The blood counts are holding steady but the liver enzymes were up again.
So cut out the extra protein and come back Tuesday for a CT Scan of the liver. Even at that, no one seems particularly worried about the liver. Dr. Ganguly suggested I lay off the alcohol, which warning Dr. McGuirk repeated in the hall when he stopped me on the way out. Dang! I met with the pharmacist to get instructions for tapering off the anti-rejection drug which I thought I would be taking for much longer. So the immune suppressant and the anti-rejection drugs are both on the way out, to be finished by Christmas. Getting these out of my system should permit the white cell count to rise the rest of the way to a healthy immune system, able to fight off germs floating around in the real world. Meanwhile the hemoglobin and platelets continue a slow rise.
Other company this week including my sister Lori who shopped and washed and cleaned, getting everything ready for Sally to come on Thursday and Lisa to spend the night Thursday night. Lisa got engaged a few weeks ago and we stayed up way too late talking wedding, which I didn't mind a bit. Sally made a really tasty stew and some excellent brownies.
Sally made luscious oatmeal chocolate chip cookies last weekend and when she delivered them she offered to bring more in a couple of days. I reminded her that Dad was gone so they probably would not go so fast. "oh yeah" she said. However, I had not considered my sister Mari's sweet tooth. I ate 1 1/2 cookie, and Mari ate the rest! In record time I think.
So I have another girlfriend here today while M&D go to the K-State football game and then we start preparing for Thanksgiving dinner.
Tuesday, November 18, 2008
Change of companions today. Robbie left to return to Vermont and Lori is here for a couple of days. Robbie and I had a good time together. Yesterday at the clinic I received permission to eat restaurant take out food, so we bought JackStack burnt ends and Carla came out and joined us. Carla's birthday was Sunday so we had birthday cake Saturday night for her.
So I can have guests.
Also at the clinic yesterday the liver enzymes were up again so I'm still on twice a week visits and still have the PICC line til they go back to once a week. I saw Abby, the greatest nurse practitioner, and she took away the V-fend altogether for the rest of the week. I go back on Friday. The other counts were steady. The ANC (absolute neutrophil, some ratio of the other counts) is 1.1. It has to be solidly 1.5 before I can go to restaurants.
Robbie and I walked the dogs around the block this week. That felt really great. I can walk them outside if someone else leashes them up. I'm waiting for the predicted 65 degrees tomorrow to do it again.
Everything else is a frustrating "wait and see." Wait until past 100 days, and closer to the time of the event to see if it is okay. Translation: don't make any non-refundable vacation plans til you get the all clear which could be "a while."
Mom and Dad are still at the lake. I think Mom is feeling pretty good now but they are enjoying the break while the sisters pitch in and stay with me. It doesn't look like I will get back to my house before the 100 days. Everyone at the clinic yesterday said no dogs for 100 days. Deep sigh.
But the holidays are coming up and I have shopping to do. and my room upstairs feels a bit more like "my own" than being in Mom & Dad's room did. I am ever so grateful to them for loaning it to me for so long, giving me time to recover enough to go up and down stairs several times a day.
I still have the rash which is not too annoying and is a good thing. During the preparation for the transplant, the experts told me that people who have a little graft vs. host seem to do better over the long run than people who have none. It comes and goes and covers most of my body at one time or another. I'm satisfied with it at this point.
The liver stuff I am a little worried about. It could mean some kind of internal graft vs. host or it could just be a reaction to the drugs. I hope it is the drugs. Meanwhile I have no special instructions about it. Just change and wait.
And that's the rather unentertaining update for today.
Cathi
So I can have guests.
Also at the clinic yesterday the liver enzymes were up again so I'm still on twice a week visits and still have the PICC line til they go back to once a week. I saw Abby, the greatest nurse practitioner, and she took away the V-fend altogether for the rest of the week. I go back on Friday. The other counts were steady. The ANC (absolute neutrophil, some ratio of the other counts) is 1.1. It has to be solidly 1.5 before I can go to restaurants.
Robbie and I walked the dogs around the block this week. That felt really great. I can walk them outside if someone else leashes them up. I'm waiting for the predicted 65 degrees tomorrow to do it again.
Everything else is a frustrating "wait and see." Wait until past 100 days, and closer to the time of the event to see if it is okay. Translation: don't make any non-refundable vacation plans til you get the all clear which could be "a while."
Mom and Dad are still at the lake. I think Mom is feeling pretty good now but they are enjoying the break while the sisters pitch in and stay with me. It doesn't look like I will get back to my house before the 100 days. Everyone at the clinic yesterday said no dogs for 100 days. Deep sigh.
But the holidays are coming up and I have shopping to do. and my room upstairs feels a bit more like "my own" than being in Mom & Dad's room did. I am ever so grateful to them for loaning it to me for so long, giving me time to recover enough to go up and down stairs several times a day.
I still have the rash which is not too annoying and is a good thing. During the preparation for the transplant, the experts told me that people who have a little graft vs. host seem to do better over the long run than people who have none. It comes and goes and covers most of my body at one time or another. I'm satisfied with it at this point.
The liver stuff I am a little worried about. It could mean some kind of internal graft vs. host or it could just be a reaction to the drugs. I hope it is the drugs. Meanwhile I have no special instructions about it. Just change and wait.
And that's the rather unentertaining update for today.
Cathi
Saturday, November 15, 2008
Another weekend
Saturday morning in my new digs. Not at my house yet, but upstairs at Mom & Dad's house. Mari is here, otherwise known as the "Red Tornado" (a reference to the old Ajax commercial and her red hair.) She is a cleanin' machine. She nuked the upstairs bed and bath and I gathered my stuff and we moved. I slept upstairs last night....completely unremarkably.
I have accumulated a lot of stuff here. Clothes and books and files and medical paraphenalia. The clothes are being winnowed of all the summer items and the britches that wind up around my ankles when I put them on. This gratifying experience is dimmed only slightly by having to give up some favored bloomers.
Mom and Dad are at the lake house where Mom is recovering from an illness. She visited the doctor and got a prescription for antibiotic, but it might be a virus, might be asthma, might be... At any rate, the sisters showed up to bail me out. Lori and a friend finished cleaning my house yesterday and located my treasured recipes so I will browse and make some menus.
My friend Robbie is coming from Vermont today, a trip put on hold this summer. She will stay with me til Tuesday when she returns home and after that I am calling on the girlfriends. It will be an interesting relay of people.
I have a rash that appears over most of my body at one time or another. It comes and goes and sometimes itches like crazy. I discovered that my fingertips are numb yesterday while working on a sewing project. I could not feel the thread and had to operate visually, thus clumsily. A very peculiar sensation. They tingle and burn from time to time but I had not been aware of numbness.
Good news is my hair covers my head now. It gets messed up and there are some annoying cowlicks in it. I don't know where to get creme rinse or mustache wax to keep it tidy. (My kids used mustache wax on their hair during a one-time trend.)
And I'm off to my day of high protein and lots of water. And a different companion.
Cathi
I have accumulated a lot of stuff here. Clothes and books and files and medical paraphenalia. The clothes are being winnowed of all the summer items and the britches that wind up around my ankles when I put them on. This gratifying experience is dimmed only slightly by having to give up some favored bloomers.
Mom and Dad are at the lake house where Mom is recovering from an illness. She visited the doctor and got a prescription for antibiotic, but it might be a virus, might be asthma, might be... At any rate, the sisters showed up to bail me out. Lori and a friend finished cleaning my house yesterday and located my treasured recipes so I will browse and make some menus.
My friend Robbie is coming from Vermont today, a trip put on hold this summer. She will stay with me til Tuesday when she returns home and after that I am calling on the girlfriends. It will be an interesting relay of people.
I have a rash that appears over most of my body at one time or another. It comes and goes and sometimes itches like crazy. I discovered that my fingertips are numb yesterday while working on a sewing project. I could not feel the thread and had to operate visually, thus clumsily. A very peculiar sensation. They tingle and burn from time to time but I had not been aware of numbness.
Good news is my hair covers my head now. It gets messed up and there are some annoying cowlicks in it. I don't know where to get creme rinse or mustache wax to keep it tidy. (My kids used mustache wax on their hair during a one-time trend.)
And I'm off to my day of high protein and lots of water. And a different companion.
Cathi
Thursday, November 13, 2008
ENZYMES PLUMMET
Dateline: KU Cancer Clinic, SM Parkway & Belinder
Cathi Maynard, of Overland Park, was seen today by Dr. Joseph McGuirk. McGuirk was interested in a rash which has covered much of Maynard's upper body for about a week. He was happy with the rash but offered a different ointment which is more greasy but should bring more relief from itching.
McGuirk was pleased to note that Maynard's liver enzymes were lower today than Monday and attributes it to a reduced dose of the anti-fungal drug, V-fend. The enzymes will be checked again next Monday. The doctor expects the trend to continue.
Other information available from Maynard's bloodwork includes WBC 1.9, Hg 9.4, Platelets 183, and ANC 1.2. A normal WBC is 4.0, normal Hg is 12-14. Her platelet count is in the normal range.
Maynard commented that she is happy with today's results and looks forward to Monday when she expects all counts to move in the appropriate direction. She is anxious for the WBC count to stay over 2.0 for 2 weeks to allow more freedom of movement for her. Meanwhile she is resting comfortably in her temporary lodging with her sister from Wichita.
Cathi Maynard, of Overland Park, was seen today by Dr. Joseph McGuirk. McGuirk was interested in a rash which has covered much of Maynard's upper body for about a week. He was happy with the rash but offered a different ointment which is more greasy but should bring more relief from itching.
McGuirk was pleased to note that Maynard's liver enzymes were lower today than Monday and attributes it to a reduced dose of the anti-fungal drug, V-fend. The enzymes will be checked again next Monday. The doctor expects the trend to continue.
Other information available from Maynard's bloodwork includes WBC 1.9, Hg 9.4, Platelets 183, and ANC 1.2. A normal WBC is 4.0, normal Hg is 12-14. Her platelet count is in the normal range.
Maynard commented that she is happy with today's results and looks forward to Monday when she expects all counts to move in the appropriate direction. She is anxious for the WBC count to stay over 2.0 for 2 weeks to allow more freedom of movement for her. Meanwhile she is resting comfortably in her temporary lodging with her sister from Wichita.
Tuesday, November 11, 2008
Anniversary : 4 months since "the call"
July 11th. I went into the hospital thinking I had choices to make only to find they were all made for me, and I dropped out of my life to live those choices. I had no time to worry, just get busy and deal with what was in front of me. It did take a few days to get my head into the game...which only left a few days til my head was completely out of the game for quite some time. (that's a laugh folks...)
I recall when Dr. Abhyankar told me I would be in the hospital 42 days, I could not even get my head around the number. I was still feeling okay, at least in my head. And I figured I would be busy running my business from the hospital. Then I completely forgot that I owned a business. Always be prepared for the unexpected. I was reasonably prepared, but my family didn't know where the "red notebook" was with all the special, emergency information, copies of all important documents and what kind of food to buy the dogs.
So today my grasp of numbers of days, e.g. 52 days til freedom, is no clearer than it was then. My sense of time is distanced from reality. Reality is that Conor & Annie are going to have a baby sometime in the next week or 10 days. In my head this time has passed unremarkably. The only thing that changes is the date on the newspaper every morning. No sense of urgency (hence the unfinished baby gifts laying around.) Unlike the house in Chicago which has been a constant list of shopping and errands and classes and PREPARATION.
Thanksgiving is coming up pretty quickly too and I am as distant from that today as I was in July. I have been the family host for several years now, having anywhere from 12 to 25 or more for dinner. Planning menus and assigning jobs and figuring out the chairs and how many babies and choosing new tablecloths and centerpieces. This year I'm thinking it looks like me and mom and dad. Which is only disappointing because I love planning the big feast and cooking and taking lots of pictures. We are a big family and there are lots of options for getting together. Some of my brothers-in-law will probably be grateful there will be no "magazine" dish this year.
So, I'll be watching for my birthday, Dec 30th. Assuming I check the date on the newspaper that morning and don't miss it.
Cathi
I recall when Dr. Abhyankar told me I would be in the hospital 42 days, I could not even get my head around the number. I was still feeling okay, at least in my head. And I figured I would be busy running my business from the hospital. Then I completely forgot that I owned a business. Always be prepared for the unexpected. I was reasonably prepared, but my family didn't know where the "red notebook" was with all the special, emergency information, copies of all important documents and what kind of food to buy the dogs.
So today my grasp of numbers of days, e.g. 52 days til freedom, is no clearer than it was then. My sense of time is distanced from reality. Reality is that Conor & Annie are going to have a baby sometime in the next week or 10 days. In my head this time has passed unremarkably. The only thing that changes is the date on the newspaper every morning. No sense of urgency (hence the unfinished baby gifts laying around.) Unlike the house in Chicago which has been a constant list of shopping and errands and classes and PREPARATION.
Thanksgiving is coming up pretty quickly too and I am as distant from that today as I was in July. I have been the family host for several years now, having anywhere from 12 to 25 or more for dinner. Planning menus and assigning jobs and figuring out the chairs and how many babies and choosing new tablecloths and centerpieces. This year I'm thinking it looks like me and mom and dad. Which is only disappointing because I love planning the big feast and cooking and taking lots of pictures. We are a big family and there are lots of options for getting together. Some of my brothers-in-law will probably be grateful there will be no "magazine" dish this year.
So, I'll be watching for my birthday, Dec 30th. Assuming I check the date on the newspaper that morning and don't miss it.
Cathi
Monday, November 10, 2008
Monday, Monday. sometimes it just turns out that way.
Clinic visit today. I am "holding steady" but the liver enzymes are still up. So I have to return on Thursday. They reduced one medication, the anti-fungal, to see if that makes a difference. If it doesn't, then they will schedule a GI workup to see if there is graft vs. host in my gut somewhere. This will start with the colonoscopy that I managed to duck this summer since I was in the hospital receiving chemo for leukemia. Sigh.
Nobody seems too worried. And this is one of the possibilities listed for me while preparing for the transplant. The PICC line isn't going anywhere yet since the white blood cells are "steady," but under 2.0. They are about 1.7 The Hg is 9.6 which is nice and I feel pretty energetic when I get enough sleep.
Sleep is elusive some nights. and other nights I sleep like a rock. No matter what drugs, teas, or other routines I try. I have just stocked up on crossword puzzles and work them mindlessly until the body finally gives up.
I have had more nausea in the last 3 weeks which I attributed to the magnesium that was added to my pharmacy. but could be more to it I reckon. (like graft vs. host in my gut)
Today is day 47. Thursday is day 50. Halfway. I still need a 24 hr caregiver. but I can cook. (I'm wondering why my mother asked that question today? Was she sending a message?)
Take care now....
Cathi
Nobody seems too worried. And this is one of the possibilities listed for me while preparing for the transplant. The PICC line isn't going anywhere yet since the white blood cells are "steady," but under 2.0. They are about 1.7 The Hg is 9.6 which is nice and I feel pretty energetic when I get enough sleep.
Sleep is elusive some nights. and other nights I sleep like a rock. No matter what drugs, teas, or other routines I try. I have just stocked up on crossword puzzles and work them mindlessly until the body finally gives up.
I have had more nausea in the last 3 weeks which I attributed to the magnesium that was added to my pharmacy. but could be more to it I reckon. (like graft vs. host in my gut)
Today is day 47. Thursday is day 50. Halfway. I still need a 24 hr caregiver. but I can cook. (I'm wondering why my mother asked that question today? Was she sending a message?)
Take care now....
Cathi
Friday, November 7, 2008
The view outside
I love the little purple birdhouse tucked in the ivy on the trunk of this walnut tree. The shadows change on it as the sun moves across the sky during the day. Which will tell you how much time I have on my hands. So I tell you with some confidence that no birds are living in this house.
I am busy sewing....I'll tell you what if and when I finish it. Planning a bathroom remodel. Wondering what I would do if I weren't quarantined. The first thing would be to walk the dogs outside in this beautiful fall weather.
Still limited on guests though the rash has disappeared. I expect the counts will have to be up two weeks in a row before I can go out to eat. Macaroni Grill is what I've been interested in for weeks now.
Dad's birthday was this week and for the 19th year in a row I gave hime a purple Santa ornament. His comment was "I can't believe you keep finding them!" Fortunately I scored big last year and had one stashed for him. It started because I thought the purple Santa I spied was fun. The next year I stumbled on one from Hallmark. And since then it's a traditional hunt every year.
Wednesday, November 5, 2008
From boring to exciting and back again
Tuesday when I showered I discovered a rash on my upper back and chest. After this discovery, I registered that my back had been itching for several days. So we dutifully reported this change to the answering machine at the clinic. About an hour later the nurse called and said "Can you come in right now? If it's graft vs. host, we need to get ahead of it as quickly as we can." So I cancelled my engagement for the afternoon and loaded up for the clinic instead. sigh.
I arrived. I was seen. I was dismissed. "maybe it is, maybe it isn't" Use this ointment and call if anything changes. another sigh, but on with the day. (it's like the old saw "take 2 aspirin and call me in the morning.")
I called my friend and we took the planned drive to have a look at the fall colors a little later than scheduled. No problem. It was nice to get out and go someplace besides the clinic, even if we were going nowhere. and there was enough color still to satisfy me.
So that was the Tuesday excitement in my life...since I voted by mail a long time ago.
Today is Dad's birthday and sister Lori is here from Fontana, KS (in case you haven't heard of it) to give M&D the day off. They left this morning headed for the Liberty Memorial and WWI museum. Hope they enjoy it. Lori and I ran some errands, though alas, we did not find a WII. Now she is baking a birthday cake for Dad and I am relaxing with the computer.
Meanwhile I continue to feel good and energetic.
Don't get konked on the head when a squirrel drops his nut. These guys around here are just moving too fast. Seems like they drop as much as they stash. One on the bedroom deck this morning had what must be the only remaining walnut in the yard. A tasty, trashy treat.
Cathi
I arrived. I was seen. I was dismissed. "maybe it is, maybe it isn't" Use this ointment and call if anything changes. another sigh, but on with the day. (it's like the old saw "take 2 aspirin and call me in the morning.")
I called my friend and we took the planned drive to have a look at the fall colors a little later than scheduled. No problem. It was nice to get out and go someplace besides the clinic, even if we were going nowhere. and there was enough color still to satisfy me.
So that was the Tuesday excitement in my life...since I voted by mail a long time ago.
Today is Dad's birthday and sister Lori is here from Fontana, KS (in case you haven't heard of it) to give M&D the day off. They left this morning headed for the Liberty Memorial and WWI museum. Hope they enjoy it. Lori and I ran some errands, though alas, we did not find a WII. Now she is baking a birthday cake for Dad and I am relaxing with the computer.
Meanwhile I continue to feel good and energetic.
Don't get konked on the head when a squirrel drops his nut. These guys around here are just moving too fast. Seems like they drop as much as they stash. One on the bedroom deck this morning had what must be the only remaining walnut in the yard. A tasty, trashy treat.
Cathi
Monday, November 3, 2008
I am 94% my brother.
Dr. McGuirk today reported that my blood is 94% donor. He was positively agape over that percentage, saying it's really great for this soon after transplant. Today is Day 40.
So look out world. There's more of Walt's genetics out there. No idea what the long term consequences of that will be.
McGuirk also called me "boring" and said he liked boring. No eating out yet, but guests and mall walking. At the empty Metcalf South mall. NOT at the crowded Oak Park mall.
So I will continue to Christmas shop in the Sunday paper ads and on-line and etc. I think the hardest part of shopping though is that I haven't seen anyone to get ideas about what they want. I have found a couple of things I want though. One of the items being touted for exercise by the clinic staff is the Nintendo Wii Fit. Who knew?
Meanwhile, the WBC count was down a little today as was the hemoglobin. The magnesium is creeping up. Mom and I trundled around the mall a couple of times on the way home and did a couple of other errands, most important of which was driving through Starbucks for a soy Carmel Machiato to celebrate how boring I am!
Another big thing from today's clinic visit...I'm down to onc clinic visit per week now. Cancel the visit this Thursday and don't come back til Monday. These lifestyle changes are coming at a rapid pace! Not as fast as the change that started July 11th, 2008, but fast enough. Today I start tapering off one of the immune suppresant drugs. It's a big honking purple thing, 4 a day, and I will be glad to lay it to rest. It also has to be taken on an empty stomach, which is a nuisance because I like to eat. all the time! The taper lasts til Dec 22, so it's not speedy or anything and involves lots of pill chopping. Music to my ears.
y'all be careful out there!
So look out world. There's more of Walt's genetics out there. No idea what the long term consequences of that will be.
McGuirk also called me "boring" and said he liked boring. No eating out yet, but guests and mall walking. At the empty Metcalf South mall. NOT at the crowded Oak Park mall.
So I will continue to Christmas shop in the Sunday paper ads and on-line and etc. I think the hardest part of shopping though is that I haven't seen anyone to get ideas about what they want. I have found a couple of things I want though. One of the items being touted for exercise by the clinic staff is the Nintendo Wii Fit. Who knew?
Meanwhile, the WBC count was down a little today as was the hemoglobin. The magnesium is creeping up. Mom and I trundled around the mall a couple of times on the way home and did a couple of other errands, most important of which was driving through Starbucks for a soy Carmel Machiato to celebrate how boring I am!
Another big thing from today's clinic visit...I'm down to onc clinic visit per week now. Cancel the visit this Thursday and don't come back til Monday. These lifestyle changes are coming at a rapid pace! Not as fast as the change that started July 11th, 2008, but fast enough. Today I start tapering off one of the immune suppresant drugs. It's a big honking purple thing, 4 a day, and I will be glad to lay it to rest. It also has to be taken on an empty stomach, which is a nuisance because I like to eat. all the time! The taper lasts til Dec 22, so it's not speedy or anything and involves lots of pill chopping. Music to my ears.
y'all be careful out there!
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