My last post had me in the hospital with the beautiful caring people at Kaiser's San Leandro hospital. On Wednesday before Thanksgiving we decided coming home would be best for me. No further chemo would help me and my oncologist Dr. Kuan told us home would be best. We talked to Patti the social worker and she told us about the care we could get from Hospice.
Our next thought was how we could maneuver the 26 steps into our apartment. Gurneys would be too big and bulky to work. I figured I would have two studly good looking men carry me up. No, in fact two beautiful petite young women showed up. They were strong as an ox. We arrived at home and we waited for a handsome man to bring a special gurney chair. They carried me upstairs backwards. It was a wild ride.
After settling in I was transferred from Kaiser to Hospice. Hospice came later in the day to make an assessment and go over procedures they would use. 4 days a week someone from Hospice will be here for about an hour to go over what has transpired from their last visit, bathe me and help with light housework. The next two days we spent rearranging the apartment to accommodate a bed for me and other equipment. Our son Erik helped with moving things around too. On Saturday they delivered my bed. The bed is electric and my brother and Marty bought rich red sheets to cheer me up. Red matched other furnishings in the room that are red.
Every day my legs are stronger but I am still very weak. I'm trying not to be cranky but seems like everything upsets me. Then I am mean and feel like a bitch. I am eating more day by day as I get further away from my last chemo treatment. Little brother Hank and his wonderful wife nurse Ann have been a godsend to us. They have taken care of me and helped us cook, wash dishes and clean the apartment. When they leave it is going to really get hard.
Posts will be more irregular because we are overwhelmed with this change in our lives. We want you to be informed about my condition but just check Facebook and my blog because it is difficult to keep up with all of the phone calls and texts. If you are healthy and will wear a mask you are welcome to visit for a very very short period because my energy level will not let me be sociable for very long. My voice is also very weak.
To all of the prayer warriors to pray for calmness bravery and acceptance. Pray for Marty as my caregiver He has also been writing this as I tell him what to say. God bless each and every one of you with much love.
Showing posts with label chemo. Show all posts
Showing posts with label chemo. Show all posts
Sunday, November 29, 2015
Friday, November 20, 2015
Another Midnight Run - The Drama Continues
This week has been another week to try to get some strength. It has also been one of more side effects of Chemo raising its ugly head. I still have extreme weakness and dehydration. I had blood work on Monday and then on Tuesday no Chemo but rather had hydration to give me some fluids.
The twenty six steps have been a big problem getting me in and out of the apartment. My legs are so weak it has been a major chore coming and going. I am trying to walk more and more each day to build my strength back up. Walking from the living room to the kitchen several times a day is helping.
On Thursday we had something else to deal with. I was having shortness of breath late in the day and by 10:00 it was so bad we called the advice nurse. Must have been a busy day for them because after 30 minutes on the phone, she and the doctor agreed that we should go to ER to be evaluated. Once again the Kaiser team went to work on me. They immediately put me on oxygen and did a chest x-ray and an EKG. IV with fluids to hydrate me and drained me of blood to start the detective work. Also I did a 15 minute treatment of deep breathing with an albuterol brohodilator to relax my muscles in the airways and increase airflow to the lungs. More than what you wanted to know right??
After that the doctor came in and said the words that I hate, CT Scan. It hasn't been but five days since I had that done but they wanted to compare the two. Since I had trouble breathing they wanted to check for blood clots in the lungs. Thank goodness, no clots.
All of the problems relate back to Chemo, the tiredness and the weakness. It wan about 12:30 am that all of this was completed so I had to lay and wait for the evaluation. At about 1:15 the nurse came in and asked if I was ready to go home. Surprised I said yes. All of the tests showed no issues other than what we knew so I was ok to be released. I dressed and we got home about 2 am.
Today I feel a little stronger but it is just a little. We will see what the next few days have in store as we prepare for Thanksgiving week with a visit from my brother and his wife. Pray for more strength.
The twenty six steps have been a big problem getting me in and out of the apartment. My legs are so weak it has been a major chore coming and going. I am trying to walk more and more each day to build my strength back up. Walking from the living room to the kitchen several times a day is helping.
On Thursday we had something else to deal with. I was having shortness of breath late in the day and by 10:00 it was so bad we called the advice nurse. Must have been a busy day for them because after 30 minutes on the phone, she and the doctor agreed that we should go to ER to be evaluated. Once again the Kaiser team went to work on me. They immediately put me on oxygen and did a chest x-ray and an EKG. IV with fluids to hydrate me and drained me of blood to start the detective work. Also I did a 15 minute treatment of deep breathing with an albuterol brohodilator to relax my muscles in the airways and increase airflow to the lungs. More than what you wanted to know right??
After that the doctor came in and said the words that I hate, CT Scan. It hasn't been but five days since I had that done but they wanted to compare the two. Since I had trouble breathing they wanted to check for blood clots in the lungs. Thank goodness, no clots.
All of the problems relate back to Chemo, the tiredness and the weakness. It wan about 12:30 am that all of this was completed so I had to lay and wait for the evaluation. At about 1:15 the nurse came in and asked if I was ready to go home. Surprised I said yes. All of the tests showed no issues other than what we knew so I was ok to be released. I dressed and we got home about 2 am.
Today I feel a little stronger but it is just a little. We will see what the next few days have in store as we prepare for Thanksgiving week with a visit from my brother and his wife. Pray for more strength.
Sunday, November 15, 2015
Kaiser to the Rescue !!!!
This week has had more drama than usual. Monday the lab work (blood work) came back with lots of different issues. When they took vitals I had a low grade fever. They told me to check my temperature every hour or so, parts were out of the normal range. Tuesday instead of chemo they hydrated me and gave a mineral cocktail. They told me that if my temp got to 100.4 or more to go to the Emergency Room. The fever was staying in the normal range, but it jumped into the dangerous Will Robinson land after 9:00 pm. So off to the ER at 9:30 pm ( we had to get dressed from PJs to clothes).
They hydrated me on arrival and then took "gallons" of blood. Some of the tests would take three days because cultures had to grow. About 2 am they decided to admit me to the hospital because there were so many issues going on. I was still very very weak like last week, and maybe even worse.
From early Wednesday through late afternoon Saturday I was in the hospital. During that time I was hydrated, on antibiotics (IV) and many minerals that I was low in. They also fed me antibiotics during my stay to fight the infection. As usual, Kaiser provided fantastic care and attention to me as if I were their only patient. The blood tests came back including the cultures and all were in the good range except for one minor infection that I am treating with antibiotics for the next week and a half.
After i got home last night, I am resting more because the noise level is lower and Marty does not check my blood pressure every two hours. Also the moaning and yelling patient down the hall is not here with me. I am trying to walk more (with a walker) to regain my strength. I am forcing myself to eat more even though food tastes awful. Not because of Marty's cooking ,but because of my taste buds.
Prayer warriors, its been a tough week and I appreciate it so much. We do not expect it to get much better so I need you to kick it into overdrive, God bless each and every one of you.
They hydrated me on arrival and then took "gallons" of blood. Some of the tests would take three days because cultures had to grow. About 2 am they decided to admit me to the hospital because there were so many issues going on. I was still very very weak like last week, and maybe even worse.
From early Wednesday through late afternoon Saturday I was in the hospital. During that time I was hydrated, on antibiotics (IV) and many minerals that I was low in. They also fed me antibiotics during my stay to fight the infection. As usual, Kaiser provided fantastic care and attention to me as if I were their only patient. The blood tests came back including the cultures and all were in the good range except for one minor infection that I am treating with antibiotics for the next week and a half.
After i got home last night, I am resting more because the noise level is lower and Marty does not check my blood pressure every two hours. Also the moaning and yelling patient down the hall is not here with me. I am trying to walk more (with a walker) to regain my strength. I am forcing myself to eat more even though food tastes awful. Not because of Marty's cooking ,but because of my taste buds.
Prayer warriors, its been a tough week and I appreciate it so much. We do not expect it to get much better so I need you to kick it into overdrive, God bless each and every one of you.
Friday, October 16, 2015
Weekly or is it Weakly update?
This week has not been as bad as last week. But it hasn't been a great week. If you remember I hurt my back last week, not badly but it hurts. That has been a large part of my problems this week. For the last week I have slept in the recliner because I can't get comfortable in the bed. I am not that comfortable in my chair, so broken sleep.
Monday I had lab work. Also it was the first day in over a week I didn't need nausea medicines. Nothing tasted right, but at least I didn't feel as if I was going to upchuck. Energy level was low but I wasn't exhausted.
Tuesday was chemo day. No big deal, no extra nausea. But food had become an issue. I was hungry, but the sight, smell, and taste of everything is just terrible. I could smell all my neighbors' meals simmering away. Yuck! Friends came by before going to Book Group late afternoon. They wanted to pick up supper for me as they bought theirs. I told them no thanks, I would stick with peanut butter. They had wonderful Mexican and I didn't.
Wednesday I was really tired and my back hurt. I didn't feel like doing anything, so I didn't. Erik was here and besides all he regularly does to help us, he gave me some computer help. I don't know if he realizes how important his visits are. We talk, he works, we laugh, and of course we all three are playing on our IPads and sharing silly things. That night I did not sleep well, I hurt and there was no way to get comfortable.
Thursday I was a mess. So tired and felt as if I were drugged. I slept off and on the whole day, even up until bedtime. The nausea was back and I hated the thought of any food, even my safe peanut butter.
I worried about things I need to do today, Friday. We have invited our A Team (a group of friends who cook and have fun together) for pot luck wine and appetizers on Saturday afternoon. I told Marty I didn't feel like cleaning the apartment and wasn't sure if I could make my appetizer and a surprise dish. And my protective hero says we can cancel if you don't feel well enough. Not going to do that. I want to visit with these friends and I want some normal. Marty will get stuff done even if I do have to sit in the chair all day today and tomorrow.
One awful thing this week, chocolate no longer tastes good. Before, even if I had just thrown up, chocolate would taste just fine. This week I did a study of all different types of chocolate. I tasted expensive chocolate, Milky Ways, M&M's, lots of different brands. Nearly all were icky, some so bad I spit them out. My taste buds are very sad.
The week wasn't awful, just tiring. I can do this manly because I have no choice. I will make the best of it, blog about it, and vent about everything.
Monday I had lab work. Also it was the first day in over a week I didn't need nausea medicines. Nothing tasted right, but at least I didn't feel as if I was going to upchuck. Energy level was low but I wasn't exhausted.
Tuesday was chemo day. No big deal, no extra nausea. But food had become an issue. I was hungry, but the sight, smell, and taste of everything is just terrible. I could smell all my neighbors' meals simmering away. Yuck! Friends came by before going to Book Group late afternoon. They wanted to pick up supper for me as they bought theirs. I told them no thanks, I would stick with peanut butter. They had wonderful Mexican and I didn't.
Wednesday I was really tired and my back hurt. I didn't feel like doing anything, so I didn't. Erik was here and besides all he regularly does to help us, he gave me some computer help. I don't know if he realizes how important his visits are. We talk, he works, we laugh, and of course we all three are playing on our IPads and sharing silly things. That night I did not sleep well, I hurt and there was no way to get comfortable.
Thursday I was a mess. So tired and felt as if I were drugged. I slept off and on the whole day, even up until bedtime. The nausea was back and I hated the thought of any food, even my safe peanut butter.
I worried about things I need to do today, Friday. We have invited our A Team (a group of friends who cook and have fun together) for pot luck wine and appetizers on Saturday afternoon. I told Marty I didn't feel like cleaning the apartment and wasn't sure if I could make my appetizer and a surprise dish. And my protective hero says we can cancel if you don't feel well enough. Not going to do that. I want to visit with these friends and I want some normal. Marty will get stuff done even if I do have to sit in the chair all day today and tomorrow.
One awful thing this week, chocolate no longer tastes good. Before, even if I had just thrown up, chocolate would taste just fine. This week I did a study of all different types of chocolate. I tasted expensive chocolate, Milky Ways, M&M's, lots of different brands. Nearly all were icky, some so bad I spit them out. My taste buds are very sad.
The week wasn't awful, just tiring. I can do this manly because I have no choice. I will make the best of it, blog about it, and vent about everything.
Sunday, October 11, 2015
This week has kicked my butt
As I posted in the two previous posts, lots of tests, trouble on the home front, and I did not handle things well. I really thought after crappy Wednesday, I could carry on as the brave strong woman I am. Nope, did not happen.
Tuesday as usual I had chemo. No big problems Tuesday or Wednesday. Thursday I was nauseated, but not bad enough to throw up. As my mother used to say, "I'm 5 minutes before vomiting." This week instead of diarrhea, I was constipated. So I was getting the cramping but no action. The nausea has continued up to this very minute. The pills take the edge off, but the nausea never really goes away.
I have had no energy all week. I just sit in the recliner and watch idiot daytime TV. Or I sleep. Chemo brain will not let me read much more than the comics in the paper. Add to that I have eaten very little this week. Chemo nose and taste buds have kicked into overtime. Just about everything smells awful, and I sometimes gag looking at food shows. I know, I am a mess. I'll tell you just how bad I am, my go to food chocolate tastes wrong.
Friday friends came to take me to lunch. I chose Chinese, for some reason that always tastes good. Well, it wasn't bad, but it wasn't right. I just picked at my lunch and brought it home to Marty for his supper. At least my friends and I had a good visit.
The Blue Angels are in town for Fleet Week. They fly over the house at least once a day (they are using Oakland Airport for home base, which is less than 10 minutes away.) Marty and I wanted to go to one of the marinas and watch the real air show. Well, I did well to dress yesterday. No sitting on the shore and watching the show. I can't go today either.
I am tired, puny, and whiney. I don't feel bad, I just don't feel good. My get up and go has got up and gone.
Tuesday as usual I had chemo. No big problems Tuesday or Wednesday. Thursday I was nauseated, but not bad enough to throw up. As my mother used to say, "I'm 5 minutes before vomiting." This week instead of diarrhea, I was constipated. So I was getting the cramping but no action. The nausea has continued up to this very minute. The pills take the edge off, but the nausea never really goes away.
I have had no energy all week. I just sit in the recliner and watch idiot daytime TV. Or I sleep. Chemo brain will not let me read much more than the comics in the paper. Add to that I have eaten very little this week. Chemo nose and taste buds have kicked into overtime. Just about everything smells awful, and I sometimes gag looking at food shows. I know, I am a mess. I'll tell you just how bad I am, my go to food chocolate tastes wrong.
Friday friends came to take me to lunch. I chose Chinese, for some reason that always tastes good. Well, it wasn't bad, but it wasn't right. I just picked at my lunch and brought it home to Marty for his supper. At least my friends and I had a good visit.
The Blue Angels are in town for Fleet Week. They fly over the house at least once a day (they are using Oakland Airport for home base, which is less than 10 minutes away.) Marty and I wanted to go to one of the marinas and watch the real air show. Well, I did well to dress yesterday. No sitting on the shore and watching the show. I can't go today either.
I am tired, puny, and whiney. I don't feel bad, I just don't feel good. My get up and go has got up and gone.
Saturday, September 26, 2015
No Chemo Week
A week ago as I blogged I was one sick chicken. Things improved, but for an off week, not much. I still have light nausea, very tired, no energy to do anything. I take the nausea pill and it helps. But food has not interested me this week.
Chemo nose and taste buds are back with a vengeance. Some foods smell so awful I think I will throw up. And then I taste something and it is just wrong. Sometimes it tastes really bad, and sometimes it is just is a little off. Marty keeps cooking stuff to tempt me. I have even cooked. Didn't even really like what I cooked. The really sad part, sometimes this is food I have raved about in the last couple of weeks. Some days no problem, some days trouble. Peanut butter and Honey Nut Cheerios still taste fine to me. Cold milk is good. Some nights a little wine, some nights I pour mine in Marty's glass. Every meal is an adventure.
What did I do this week if I am so tired? Well this was Erik's off week and I did the laundry. Not a big deal for most folks but it is for me. I dusted the apartment Friday, we have guests coming today and tomorrow. Marty is doing the floors and heavy hard stuff. After my little bit of cleaning I was done for the day. Some days just showering, dressing, and walking take all my energy and I am done before noon, in the chair resting.
Monday I see my oncologist and will have lab work. Tuesday I see my primary care doctor and then have chemo. If I feel like it my chauffer of the day Kirsten is taking me to lunch.
So in summary, I am tired, nauseated, have low energy. This is normal for my condition. I still am much healthier than I was in December. In fact to be so sick I am really doing well. I just have to accept I can't do everything I want to do.
Chemo nose and taste buds are back with a vengeance. Some foods smell so awful I think I will throw up. And then I taste something and it is just wrong. Sometimes it tastes really bad, and sometimes it is just is a little off. Marty keeps cooking stuff to tempt me. I have even cooked. Didn't even really like what I cooked. The really sad part, sometimes this is food I have raved about in the last couple of weeks. Some days no problem, some days trouble. Peanut butter and Honey Nut Cheerios still taste fine to me. Cold milk is good. Some nights a little wine, some nights I pour mine in Marty's glass. Every meal is an adventure.
What did I do this week if I am so tired? Well this was Erik's off week and I did the laundry. Not a big deal for most folks but it is for me. I dusted the apartment Friday, we have guests coming today and tomorrow. Marty is doing the floors and heavy hard stuff. After my little bit of cleaning I was done for the day. Some days just showering, dressing, and walking take all my energy and I am done before noon, in the chair resting.
Monday I see my oncologist and will have lab work. Tuesday I see my primary care doctor and then have chemo. If I feel like it my chauffer of the day Kirsten is taking me to lunch.
So in summary, I am tired, nauseated, have low energy. This is normal for my condition. I still am much healthier than I was in December. In fact to be so sick I am really doing well. I just have to accept I can't do everything I want to do.
Friday, September 11, 2015
Update on chemo and other stuff
Monday I had lab work as usual. I was really hoping for normal ranges. It worries me if things are too low to take chemo. I know the tumor won't gain on me in just one week, but I still worry. Luckily all was in an allowable range and I had chemo on Tuesday.
I am having more tingling and numbness in different parts of my body. The doctor is surprised I haven't had more problems with neuropathy. I hope it doesn't get worse. I could have problems just feeding myself if I can't feel the fork. Also sometimes there is pain involved. I don't want to be drugged up on Mr. Morphine again. I know, I'm borrowing trouble.
Lack of sleep has been a problem this week. I always have a problem sleeping the night of chemo. But this is all week. The question is, is it chemo or the heat wave we are enduring? I am betting on the heat. This Victorian house has no insulation in the outside walls, so it doesn't cool down at night. It just holds the heat in. The house has been over 90 degrees at midnight, outside 70 degrees. The fog is coming in and today is cooler. Maybe I will sleep better tonight. I do know I am really tired and really cranky.
In spite of being tired and having chemo I have done some normal things. I wash dishes, and make the bed everyday. I changed the sheets, did the laundry (Boy did the hung up laundry dry quickly! 10% humidity and 101 degrees. My own dryer inside the house.)
Yesterday three friends took me to lunch. We gossiped, talked about my Kaiser interview, caught up on their lives, and laughed a lot. It was a lovely time and I hope we can get together more often. They are busy ladies, so often probably won't happen.
It has been way too hot to cook, so I made Benedictine and pimento cheese for Marty. I can't eat the Benedictine, which I love, because of the raw ingredients. As for the pimento cheese, chemo taste buds hate mayonnaise, so it tastes awful to me. Two of my favorite foods, and I can't eat them. Peanut butter seems to taste OK and is my food of choice. I have had bacon and tomato sandwiches. We blanch the tomatoes and peel them, then they are safe for me to eat.
I don't feel bad, just really tired. I napped this morning and plan another nap for this afternoon. I am doing really well and about to mark a big anniversary. Next week will mark one year since the tumor was found. And I am still here. Thank you to all who hold me in their prayers and who have helped get me through the dark hard times of the last year. Hang on and watch me go for year two. We can do this!
I am having more tingling and numbness in different parts of my body. The doctor is surprised I haven't had more problems with neuropathy. I hope it doesn't get worse. I could have problems just feeding myself if I can't feel the fork. Also sometimes there is pain involved. I don't want to be drugged up on Mr. Morphine again. I know, I'm borrowing trouble.
Lack of sleep has been a problem this week. I always have a problem sleeping the night of chemo. But this is all week. The question is, is it chemo or the heat wave we are enduring? I am betting on the heat. This Victorian house has no insulation in the outside walls, so it doesn't cool down at night. It just holds the heat in. The house has been over 90 degrees at midnight, outside 70 degrees. The fog is coming in and today is cooler. Maybe I will sleep better tonight. I do know I am really tired and really cranky.
In spite of being tired and having chemo I have done some normal things. I wash dishes, and make the bed everyday. I changed the sheets, did the laundry (Boy did the hung up laundry dry quickly! 10% humidity and 101 degrees. My own dryer inside the house.)
Yesterday three friends took me to lunch. We gossiped, talked about my Kaiser interview, caught up on their lives, and laughed a lot. It was a lovely time and I hope we can get together more often. They are busy ladies, so often probably won't happen.
It has been way too hot to cook, so I made Benedictine and pimento cheese for Marty. I can't eat the Benedictine, which I love, because of the raw ingredients. As for the pimento cheese, chemo taste buds hate mayonnaise, so it tastes awful to me. Two of my favorite foods, and I can't eat them. Peanut butter seems to taste OK and is my food of choice. I have had bacon and tomato sandwiches. We blanch the tomatoes and peel them, then they are safe for me to eat.
I don't feel bad, just really tired. I napped this morning and plan another nap for this afternoon. I am doing really well and about to mark a big anniversary. Next week will mark one year since the tumor was found. And I am still here. Thank you to all who hold me in their prayers and who have helped get me through the dark hard times of the last year. Hang on and watch me go for year two. We can do this!
Monday, August 31, 2015
Health Update
We got back from Louisville on Wednesday, August 19. I was fine on Thursday, still pumped up from all the goings on in Louisville. I crashed on Friday, and slept most of that day and Saturday. Sunday I was still very tired, but almost back to my normal level.
Monday I had lab work and also saw a different oncologist. My oncologist had a family emergency and was off this week. The new doctor was nice, and explained some things we had never thought to ask. I have chemo brain and Marty gets overwhelmed sometimes with all we are told.
The doctor told me when I was diagnosed with cancer the tumor marker ( a blood test that checks the protein the tumor puts out ) was over 1000. You want low numbers. He said the one a few weeks ago was only a little over 100. Very impressive he thought. Again we were reminded this is only a clue to how I am doing. He showed us the graph on the tests and it looks like a nose dive from October to August. Very very happy on this one.
Tuesday I had chemo. It went well, no surprises with vitals going crazy. There has been light nausea, but controlled by meds. I also have been tired all week and having trouble sleeping. So am I tired from the chemo, or from not sleeping? Am I not sleeping because of the chemo? We will never know. As I say, I have no endings.
Sunday was a big day. The longish drive to church. The church service, then we had a church lunch to kick off the new year in the educational program. I was tired. But we weren't done yet. Marty had a quick meeting with his committee on the renovations. I said I would rest in the car. Well, that didn't work out.
One of our members, another Janet, brings an older member, Annabelle, to church each Sunday. Janet was in Marty's meeting and her teenage son was keeping Annabelle company. They were talking about TV, the early years. I hung out with them and we talked about me seeing jet planes as a child and it being a huge deal. Annabelle talked about going to the airport just to watch planes taking off or landing. I said I took my first graders on a field trip to the airport. It was a big deal. We discussed other things we old people remember. I told him how big the first cell phones were. I am sure Janet's son was convinced we were older than God.
Today was lab work again. Tuesday chemo if the all was OK.
I have felt pretty good this past week. As I said I have been tired with some nausea. But I have been able to cook, and wash dishes. I have walked my 30 minutes everyday. I am not terribly active but I am not sitting back and giving up. Tuesday I will begin my 12th month since the diagnosis of pancreatic cancer. I have made it this long because of prayer warriors, wonderful Kaiser care, Marty, Erik, family, church family, and my incredible friends. I plan to stick around much longer.
Monday I had lab work and also saw a different oncologist. My oncologist had a family emergency and was off this week. The new doctor was nice, and explained some things we had never thought to ask. I have chemo brain and Marty gets overwhelmed sometimes with all we are told.
The doctor told me when I was diagnosed with cancer the tumor marker ( a blood test that checks the protein the tumor puts out ) was over 1000. You want low numbers. He said the one a few weeks ago was only a little over 100. Very impressive he thought. Again we were reminded this is only a clue to how I am doing. He showed us the graph on the tests and it looks like a nose dive from October to August. Very very happy on this one.
Tuesday I had chemo. It went well, no surprises with vitals going crazy. There has been light nausea, but controlled by meds. I also have been tired all week and having trouble sleeping. So am I tired from the chemo, or from not sleeping? Am I not sleeping because of the chemo? We will never know. As I say, I have no endings.
Sunday was a big day. The longish drive to church. The church service, then we had a church lunch to kick off the new year in the educational program. I was tired. But we weren't done yet. Marty had a quick meeting with his committee on the renovations. I said I would rest in the car. Well, that didn't work out.
One of our members, another Janet, brings an older member, Annabelle, to church each Sunday. Janet was in Marty's meeting and her teenage son was keeping Annabelle company. They were talking about TV, the early years. I hung out with them and we talked about me seeing jet planes as a child and it being a huge deal. Annabelle talked about going to the airport just to watch planes taking off or landing. I said I took my first graders on a field trip to the airport. It was a big deal. We discussed other things we old people remember. I told him how big the first cell phones were. I am sure Janet's son was convinced we were older than God.
Today was lab work again. Tuesday chemo if the all was OK.
I have felt pretty good this past week. As I said I have been tired with some nausea. But I have been able to cook, and wash dishes. I have walked my 30 minutes everyday. I am not terribly active but I am not sitting back and giving up. Tuesday I will begin my 12th month since the diagnosis of pancreatic cancer. I have made it this long because of prayer warriors, wonderful Kaiser care, Marty, Erik, family, church family, and my incredible friends. I plan to stick around much longer.
Friday, August 14, 2015
Chemo, flight, all kinds of stuff
Tuesday morning I took chemo. All went well, and I felt pretty good. That night at 9:15 we left for the airport to take a red eye to Louisville. Now to get from check in to the gate was a mess.
Friend Mark noticed during the day, United did not have Marty and me on their list, even though we were pre checked in. He straightened that out, we thought and checked our luggage. Marty was still not on the list. With a lot of help, he was found and added to the flight. We walk to security, as a precheck in we get the short line, don't have to take off shoes and stuff, or pull out our computers. Well, Marty was not on the pre check in list. So he was sent away to the looong line. Mark and I breezed through and sat down to wait for Marty.
Since we were done showing ID I was going to put mine back in my wallet. It was gone! I had my tickets, I had the need a wheelchair card, no ID. Mark goes looking for it after I had dumped my purse twice looking for it. Nope, he couldn't find it. I was having a sh*t fit. I see a TSA guy walking around and asked if he had found an ID. He asked my name, and handed it to me. He had found it on the floor by the moving belt thingy. Great relief.
We finally get on the plane, I take my valium and sort of doze after we take off. All is nice and dark and quiet on the plane. Then the attendants come down the aisle hawking their wares at 1:30 AM. Really? Any way I did fine on both flights and we arrived in Louisville safe and sound, and on time. Thank you Prayer Warriors.
Then we kept a family tradition.
Friend Mark noticed during the day, United did not have Marty and me on their list, even though we were pre checked in. He straightened that out, we thought and checked our luggage. Marty was still not on the list. With a lot of help, he was found and added to the flight. We walk to security, as a precheck in we get the short line, don't have to take off shoes and stuff, or pull out our computers. Well, Marty was not on the pre check in list. So he was sent away to the looong line. Mark and I breezed through and sat down to wait for Marty.
Since we were done showing ID I was going to put mine back in my wallet. It was gone! I had my tickets, I had the need a wheelchair card, no ID. Mark goes looking for it after I had dumped my purse twice looking for it. Nope, he couldn't find it. I was having a sh*t fit. I see a TSA guy walking around and asked if he had found an ID. He asked my name, and handed it to me. He had found it on the floor by the moving belt thingy. Great relief.
We finally get on the plane, I take my valium and sort of doze after we take off. All is nice and dark and quiet on the plane. Then the attendants come down the aisle hawking their wares at 1:30 AM. Really? Any way I did fine on both flights and we arrived in Louisville safe and sound, and on time. Thank you Prayer Warriors.
Then we kept a family tradition.
WHITE CASTLE!!!!! We met Hank, Ann, Papa Jack, and Yolanda and ate well. We always go straight from the airport to the Eastern Parkway White Castle. Then we go to my brother's.
We are having a great visit. Last night we walked up to a lovely neighborhood restaurant, Buck's. My family has eaten there for years. Wonderful place. We were in the back room so that we wouldn't annoy others.
Papa Jack and Yolanda ( Mama Yo)
Little Brother and Ann. Hank just had eye surgery so he is still a little puffy.
Hank, Papa Jack, and Ann
Left to right
Papa Jack, Yolanda, Me, Ann behind me, Hank, Marty, Mark. And the wonderful food ready for us to eat. Of course we took this into the sun, so not a great picture.
Today Marty and Mark are off to Mammoth Cave and the Bourbon Trail. Ann and I have pulled out bowls and plates for tomorrow's party. We both love to make lists and mark things off. So I made a list of all food and then we put sticky notes on each plate/bowl to show what would be in/on it. Then we marked it off. Tomorrow we will mark off as food is put out. Love marking off what we are doing. It feels so hard working.
We are having a great time, and look forward to the rest of our time here. I will post more through the week. For my worry wart friends, yes I am resting and listening to my body.
Sunday, August 9, 2015
No chemo this week
Monday I had lab work. I always get the results almost before we get home. I check the platelets because if they are low, no chemo. The other tests, and there a lot of them, I don't understand or don't think they are a huge factor in whether I take chemo. Well that afternoon the nurse called me and said no chemo this week. My white blood cells are too low. I do know that one. In the past they have given me shots to improve the white cells and talked about blood transfusions. So this became an off week.
We are to leave Tuesday for Louisville and I was afraid they would want me to stay home. Would they change my August schedule? Would I have to do chemo on my planned off week? The trip was planned around my off week and when Mark (our giver of frequent flyer miles) could take vacation with us. I still get my off week. Tuesday I will have chemo if all is well, and we take a redeye that night.
When I asked the nurse if this would mess up our planned vacation, she said, "again a trip?" ( yes this will be our third trip this summer: Dallas, San Diego, and now Louisville) I told her I have a limited time I will be able to travel and I have family and friends to visit.
The rest of the week I did normal things. I cooked more than usual and when I didn't cook I did the dishes. I walked 30 minutes every day. Wednesday afternoon Erik, our son, came to visit and to help out with domestic duties. I had broken beans the day before and put them on to cook and fixed a chuck roast in the crock pot. We all agreed it was a fabulous meal. Nothing better than fresh green beans cooked low and slow, with just a little bacon grease and other Southern secret ingredients.
Friday I went to brunch with Kirsten and later Pat joined us at my home. We had a gab fest and caught up on what each was doing. I am so lucky to have these ladies in my life.
I have lots of friends that check on me, visit me, Facebook me, call me. Another dear friend, Janet R (so you know it isn't me, they call me Janet A) texts or emails me nearly every day. Janet R checks what is going on, how am I doing, am I happy, do I need anything. We ask Janet R to join us, but since she owns a business, she can't get away often. So we don't see her much.
Today, Sunday, I went to church. That is a big deal. It is a 35-40 minute drive. I have to be up and dressed earlier than usual. Meds must be taken early. And there is the emotion of the love I feel from my church family. When we get in the car to drive home I am pretty well whipped. But it is worth being tired.
So normal is good. I felt good most of the week, not as tired, and very little nausea. I am not sleeping very well, but I blame the bed hog I live with. I love Marty so much, but this week he has royally ticked me off. He is sleeping on a diagonal, that would be with his head on MY PILLOW. He also stole the prop my arm up pillow. He took all the covers, and then complained how hot he was during the night. My complaining about him is an indicator I am feeling better. For some reason when I feel better I feel justified in being ticked at the best caregiver ever.
Keep your fingers crossed that I can take chemo on Tuesday. I get scared when chemo is put off. I am afraid the tumor will get ahead of us. So never ever do I want to miss a session.
We are to leave Tuesday for Louisville and I was afraid they would want me to stay home. Would they change my August schedule? Would I have to do chemo on my planned off week? The trip was planned around my off week and when Mark (our giver of frequent flyer miles) could take vacation with us. I still get my off week. Tuesday I will have chemo if all is well, and we take a redeye that night.
When I asked the nurse if this would mess up our planned vacation, she said, "again a trip?" ( yes this will be our third trip this summer: Dallas, San Diego, and now Louisville) I told her I have a limited time I will be able to travel and I have family and friends to visit.
The rest of the week I did normal things. I cooked more than usual and when I didn't cook I did the dishes. I walked 30 minutes every day. Wednesday afternoon Erik, our son, came to visit and to help out with domestic duties. I had broken beans the day before and put them on to cook and fixed a chuck roast in the crock pot. We all agreed it was a fabulous meal. Nothing better than fresh green beans cooked low and slow, with just a little bacon grease and other Southern secret ingredients.
Friday I went to brunch with Kirsten and later Pat joined us at my home. We had a gab fest and caught up on what each was doing. I am so lucky to have these ladies in my life.
I have lots of friends that check on me, visit me, Facebook me, call me. Another dear friend, Janet R (so you know it isn't me, they call me Janet A) texts or emails me nearly every day. Janet R checks what is going on, how am I doing, am I happy, do I need anything. We ask Janet R to join us, but since she owns a business, she can't get away often. So we don't see her much.
Today, Sunday, I went to church. That is a big deal. It is a 35-40 minute drive. I have to be up and dressed earlier than usual. Meds must be taken early. And there is the emotion of the love I feel from my church family. When we get in the car to drive home I am pretty well whipped. But it is worth being tired.
So normal is good. I felt good most of the week, not as tired, and very little nausea. I am not sleeping very well, but I blame the bed hog I live with. I love Marty so much, but this week he has royally ticked me off. He is sleeping on a diagonal, that would be with his head on MY PILLOW. He also stole the prop my arm up pillow. He took all the covers, and then complained how hot he was during the night. My complaining about him is an indicator I am feeling better. For some reason when I feel better I feel justified in being ticked at the best caregiver ever.
Keep your fingers crossed that I can take chemo on Tuesday. I get scared when chemo is put off. I am afraid the tumor will get ahead of us. So never ever do I want to miss a session.
Sunday, August 2, 2015
More ups than downs in the health report
Some of this is a repeat of little updates, so hang in there. There is some new stuff.
Monday I had lab work and saw the oncologist. She says I am doing really well. She is surprised I am having so few side effects, especially neuropathy. Most patients on my type of chemo have a big problem. I posted on Facebook, bragged how well I am doing. And I really noted the low side effects. Well, that came back to bite me.
Monday night and Tuesday morning I had great nausea and intestinal issues. Most of the night I was gagging and nothing happening. (I have a cast iron stomach and rarely vomit.) Early morning there was vomiting. Damn bragging always gets you. I was afraid with the vomiting they wouldn't let me have chemo Tuesday. They just upped the anti nausea meds and I did fine. I was so good I went to lunch and then shoe shopping. I did use a wheelchair this time while shopping. I sat and Kirsten and Pat found shoes and pushed me around the store. When I got home I took a three hour nap.
Wednesday Pat and friend Rose Anne came to visit and we went to lunch. I am becoming a social butterfly. It is great to be able to go out for "normal" things. And great to have friends who will take me.
Wednesday I received an email from my oncologist with the results of the tumor marker blood test they did Tuesday. This test gives info about the size of the tumor. The numbers are lower which means the tumor is not spreading. Marty and I celebrated by opening a bottle of champagne. And we emptied it.
Friday I looked at the apartment and thought I can not stand the dust any longer. I have been called Tidy Tilly and used to clean a lot. (yes I am checking out the housecleaning for chemo patients) I dusted the whole apartment, baseboards, fancy banister, pictures, door tops, art glass. I was busy. I looked at the vacuum cleaner and thought nah that is too hard. Another nap was in order.
Weekends are for resting. Even the little I do during the week is tiring. I need to just do nothing some days, so I do.
There is still some nausea, but not bad. Sometimes I take a pill, sometimes not. The neuropathy is still manageable. Mainly tingling in my finger tips. The feet have been weird for several years, not a lot of feeling, so no change there. Over all I am doing great.
In little over a week we fly to Kentucky to see family and friends. As most of you know I hate hate flying. So keep me in your prayers for calmness and that the valium works.
Monday I had lab work and saw the oncologist. She says I am doing really well. She is surprised I am having so few side effects, especially neuropathy. Most patients on my type of chemo have a big problem. I posted on Facebook, bragged how well I am doing. And I really noted the low side effects. Well, that came back to bite me.
Monday night and Tuesday morning I had great nausea and intestinal issues. Most of the night I was gagging and nothing happening. (I have a cast iron stomach and rarely vomit.) Early morning there was vomiting. Damn bragging always gets you. I was afraid with the vomiting they wouldn't let me have chemo Tuesday. They just upped the anti nausea meds and I did fine. I was so good I went to lunch and then shoe shopping. I did use a wheelchair this time while shopping. I sat and Kirsten and Pat found shoes and pushed me around the store. When I got home I took a three hour nap.
Wednesday Pat and friend Rose Anne came to visit and we went to lunch. I am becoming a social butterfly. It is great to be able to go out for "normal" things. And great to have friends who will take me.
Wednesday I received an email from my oncologist with the results of the tumor marker blood test they did Tuesday. This test gives info about the size of the tumor. The numbers are lower which means the tumor is not spreading. Marty and I celebrated by opening a bottle of champagne. And we emptied it.
Friday I looked at the apartment and thought I can not stand the dust any longer. I have been called Tidy Tilly and used to clean a lot. (yes I am checking out the housecleaning for chemo patients) I dusted the whole apartment, baseboards, fancy banister, pictures, door tops, art glass. I was busy. I looked at the vacuum cleaner and thought nah that is too hard. Another nap was in order.
Weekends are for resting. Even the little I do during the week is tiring. I need to just do nothing some days, so I do.
There is still some nausea, but not bad. Sometimes I take a pill, sometimes not. The neuropathy is still manageable. Mainly tingling in my finger tips. The feet have been weird for several years, not a lot of feeling, so no change there. Over all I am doing great.
In little over a week we fly to Kentucky to see family and friends. As most of you know I hate hate flying. So keep me in your prayers for calmness and that the valium works.
Sunday, July 26, 2015
And the rest of my week went better
My last blog post I shared my shopping trip and my near collapse. I have recovered from doing too much, and had a pretty good week.
The rest of the week, I didn't do much, watched idiot TV, read a little and played various games of solitaire. I also cooked with Marty, did dishes, and walked 30 minutes every day. I didn't walk today, church takes a lot of energy. I have the 30 + minute drive, the service, and today we were checking out the demo for our sanctuary remodel. A lot of standing and walking, I had a little ankle swelling which always scares me a little. After legs up in the recliner, the swelling went down.
All in all, I am OK. I don't hurt, not real nauseated, no trips to the ER.
Tomorrow I have my monthly appointment with my oncologist. I will tell her about the trouble shopping. Also I will let her know my recovery was fairly quick. There probably isn't much she can do about me ignoring warning signs from my body. I will be more careful and maybe ask for a wheelchair when I go shopping. Maybe I have reached a point where I can't do shopping without help.
We will see. Tuesday after chemo, Kirsten is taking shopping for shoes. Keep your fingers crossed.
The rest of the week, I didn't do much, watched idiot TV, read a little and played various games of solitaire. I also cooked with Marty, did dishes, and walked 30 minutes every day. I didn't walk today, church takes a lot of energy. I have the 30 + minute drive, the service, and today we were checking out the demo for our sanctuary remodel. A lot of standing and walking, I had a little ankle swelling which always scares me a little. After legs up in the recliner, the swelling went down.
All in all, I am OK. I don't hurt, not real nauseated, no trips to the ER.
Tomorrow I have my monthly appointment with my oncologist. I will tell her about the trouble shopping. Also I will let her know my recovery was fairly quick. There probably isn't much she can do about me ignoring warning signs from my body. I will be more careful and maybe ask for a wheelchair when I go shopping. Maybe I have reached a point where I can't do shopping without help.
We will see. Tuesday after chemo, Kirsten is taking shopping for shoes. Keep your fingers crossed.
Saturday, July 18, 2015
And this is how my week went
Monday I had lab work as usual. All tests were in an acceptable range, so Tuesday I had chemo. Good friend Pat took me to give Marty time for normal stuff. Pat and I had a good visit as I was given my chemo. No side effects that first day. That night I did a load of laundry, with Marty's help. Surprise, surprise, I slept Tuesday night. I rarely sleep the night of chemo.
Wednesday I was doing well enough I did another load of laundry. I did my 30 minute walk. I cleaned the bathroom, and then I was done for the day. I crawled into the recliner, put on idiot TV and rested. I was slightly nauseated and took one of my magic pills.
Thursday Pat and I planned to go to lunch. I was nauseated, tired, and not sure if I should go or not. Then I figured if at home I will still be nauseated even with the magic pill. I have to eat to hold my weight at a healthy level, so why not let someone else cook lunch and clean up. And Pat makes me laugh. That always out weighs sitting home alone.
We also discovered a wonderful dress shop. Most of what I liked was waaaay too expensive. I fell in love with an really expensive outfit but controlled myself. I told the shop owner if I bought it I would have to be buried in it. And that I already had a Mother of the Groom dress to be buried in. What Pat liked would not work on her 6' 3" body. So we just looked and enjoyed the beauty of the outfits.
Friday a friend from Kentucky took Marty and me to brunch. I was still nauseated and tired, but toughed it out in order to visit with a long time friend.
Wednesday I was doing well enough I did another load of laundry. I did my 30 minute walk. I cleaned the bathroom, and then I was done for the day. I crawled into the recliner, put on idiot TV and rested. I was slightly nauseated and took one of my magic pills.
Thursday Pat and I planned to go to lunch. I was nauseated, tired, and not sure if I should go or not. Then I figured if at home I will still be nauseated even with the magic pill. I have to eat to hold my weight at a healthy level, so why not let someone else cook lunch and clean up. And Pat makes me laugh. That always out weighs sitting home alone.
We also discovered a wonderful dress shop. Most of what I liked was waaaay too expensive. I fell in love with an really expensive outfit but controlled myself. I told the shop owner if I bought it I would have to be buried in it. And that I already had a Mother of the Groom dress to be buried in. What Pat liked would not work on her 6' 3" body. So we just looked and enjoyed the beauty of the outfits.
Friday a friend from Kentucky took Marty and me to brunch. I was still nauseated and tired, but toughed it out in order to visit with a long time friend.
Marty, John Kim, and me
Today is Saturday and I am being incredibly brave. Marty and friend Mark are on their way to Yosemite for two days. I was invited, but no way I can hike up to the falls anymore, or walk trails. Just the drive would have been tiring. So I am home alone. This is the first time since they found my cancer that I haven't had someone with me over night. Marty is just a little worried about me health wise. I am more worried being alone, I have always been afraid of being alone at night. And that is why we have a burglar alarm.
Oh, just to make my life even more fun, yesterday my knee started hurting and was not supporting me all the time. I can't trust it and need to hold furniture, walls, banisters as I walk. My question is, how can you go to bed and nothing is wrong but when you get up, the knee screams gotcha? Not a lot of pain, just uncomfortable walking. Don't worry about me, this is a recurring thing and I just needed to bitch about it.
Saturday, July 11, 2015
This week's health update
Because of traveling and swollen legs I didn't have chemo for two weeks. Tuesday I was back in the chemo cycle. And chemo kicked my butt this week. I am not anyways as sick as last winter. But I had issues that slowed me down.
I never sleep well the night before chemo, just nerves. I know it doesn't hurt, but I get anxious. That was one night of broken sleep. Tuesday night the chemo didn't just break my sleep, it did away with it. This is a minor side effect ( minor except when it happens to me) sleep pattern messed up. So about 2 hours sleep. I planned to nap most of Wednesday, that didn't work. It didn't matter how tired I was, I couldn't go to sleep. I did sleep Wednesday night.
I was really tired all week. Thursday I slept most of the day and early evening. Friday I napped several times. Today I am perkier.
Along with the sleep issues and tiredness, I have been nauseated. No throwing up, just at the point my mother used to say, "five minutes before vomiting". I took my pills and they sort of helped. I had two days I didn't really eat anything. I was so nauseated I couldn't even eat chocolate! That was a first. I made myself eat yesterday, I can't get gaunt again.
There is some good news. When I finished the second round of antibiotics, my legs were still swollen. My doctor put me on a diuretic. She felt the skin was stretched and holding fluid. Within in four days I had ankles again. The diuretic is now to be taken as needed.
I am not real sick, just not as good as I have been. We will see how this next Tuesday works.
I never sleep well the night before chemo, just nerves. I know it doesn't hurt, but I get anxious. That was one night of broken sleep. Tuesday night the chemo didn't just break my sleep, it did away with it. This is a minor side effect ( minor except when it happens to me) sleep pattern messed up. So about 2 hours sleep. I planned to nap most of Wednesday, that didn't work. It didn't matter how tired I was, I couldn't go to sleep. I did sleep Wednesday night.
I was really tired all week. Thursday I slept most of the day and early evening. Friday I napped several times. Today I am perkier.
Along with the sleep issues and tiredness, I have been nauseated. No throwing up, just at the point my mother used to say, "five minutes before vomiting". I took my pills and they sort of helped. I had two days I didn't really eat anything. I was so nauseated I couldn't even eat chocolate! That was a first. I made myself eat yesterday, I can't get gaunt again.
There is some good news. When I finished the second round of antibiotics, my legs were still swollen. My doctor put me on a diuretic. She felt the skin was stretched and holding fluid. Within in four days I had ankles again. The diuretic is now to be taken as needed.
I am not real sick, just not as good as I have been. We will see how this next Tuesday works.
Sunday, July 5, 2015
I am doing well, so more travel
You may wonder if I am so sick, how can I travel. I wonder too. I think it is a combination of things. Most importantly, Prayer Warriors are keeping me strong. Other factors a gentler chemo. While in the hospital in December, we decided to go for quality of life. I now have fewer side effects and I am stronger because now I can exercise and keep food down. I am doing some traveling, but I must factor in rest time, legs swelling, and crankiness.
Thursday I wrote about our great train trip to San Diego. Today's post is a day trip all about trains. Prepare to be over whelmed by too many pictures of not scenery, but of TRAINS! We rode Amtrak to Sacramento to tour the Train Museum. Did you know I love trains?
I only have one picture taken while we rode the train.
Thursday I wrote about our great train trip to San Diego. Today's post is a day trip all about trains. Prepare to be over whelmed by too many pictures of not scenery, but of TRAINS! We rode Amtrak to Sacramento to tour the Train Museum. Did you know I love trains?
I only have one picture taken while we rode the train.
On the train bridge crossing the Suisun Bay looking at the car bridge. The dot on the horizon is the Moth Ball Fleet.
The museum is all about trains on the West Coast. The transcontinental railroad was mainly funded by California business men. Very rich business men.
This shows the building of snow sheds. They protect the rails from being blocked by heavy snow.
A train from the mid 19th century
Another early train
Wood was burned to provide the steam on early trains.
Isn't this wheel great?
Sleeping cars were different from what we had last week.
Ceilings were higher, and notice this is a double bed as was the upper berth. Not a skinny single.
The Dining Car was where the real elegance was. At least until about around the 1960's.
Two pictures of the kitchen
Just one example of the real china used in the recent past.
The Mail Car was a moving Post Office
Just to show you how huge these trains were. Friend Mark and Marty . . . look at the wheel behind them. Mark is well over 6 feet tall.
Love this Virginia City and Truckee train. Look at the armed guards. This line carried silver from the mines in Nevada and gold from California.
This train is gorgeous. Look at all the colors, and that headlight.
Final train, a monster train. These big ones are not like the trains Marty and I grew up with. The monsters were for the West. They had to cross the Rockies and the Sierras. That took big honking engines. Todays engines are not as big because of technology. They also are not as dramatic.
July no more trips are planned. I have to work in chemo sometime. And the chemo is what makes it possible to make these trips.
Sunday, June 28, 2015
Health Update with some other stuff
This has been a busy week, some good, some not so good. I posted last week about the great news of the tumor being smaller. I earlier had posted about my leg infection that was clearing up. Well, that didn't continue.
I talked to the advice nurse and had a phone appointment with a doctor on last Sunday. I had finished the antibiotic and the swelling and redness began to increase. They started me on another 10 day round of antibiotics, a different one from what I had been on. Monday I went into oncology for my weekly lab work. I told them what was going on, the nurse checked my legs, and then said not to go home yet. She wanted my oncologist to check me out. The decision had to be made on whether or not I had chemo on Tuesday.
The doctor looked at my legs and talked to Marty and me. She knew we were leaving on our Amtrak adventure on Wednesday. She said no chemo, (so I will have 2 weeks off) with the infection I might have more side effects and that could ruin my trip. She changed the antibiotics back to the one Baylor hospital had put me on. It had fewer side effects and we knew I had done well on it.
So here I am in San Diego a week later with ankles most of the time and very little redness. ( I will do another post about Amtrak and San Diego later this week.) I have had no trouble with the antibiotic and it seems to be doing the job for me. We will see how things go when I finish the bottle later this week.
A little bit about San Diego. I am walking in the pool everyday. I am eating well and often. I feel good and not as tired. Our wonderful friends/hosts Richard and Luis are really taking good care of me. We eat out, Richard cooks for me, and today Luis' family is coming for a pool party and to see me.
Internet is spotty, I thinks our computers are home bodies and don't like traveling. I will post a blog with pictures when we get home. I don't want to be in the middle of posting and lose internet connection for several hours. That is not good for my blood pressure.
I talked to the advice nurse and had a phone appointment with a doctor on last Sunday. I had finished the antibiotic and the swelling and redness began to increase. They started me on another 10 day round of antibiotics, a different one from what I had been on. Monday I went into oncology for my weekly lab work. I told them what was going on, the nurse checked my legs, and then said not to go home yet. She wanted my oncologist to check me out. The decision had to be made on whether or not I had chemo on Tuesday.
The doctor looked at my legs and talked to Marty and me. She knew we were leaving on our Amtrak adventure on Wednesday. She said no chemo, (so I will have 2 weeks off) with the infection I might have more side effects and that could ruin my trip. She changed the antibiotics back to the one Baylor hospital had put me on. It had fewer side effects and we knew I had done well on it.
So here I am in San Diego a week later with ankles most of the time and very little redness. ( I will do another post about Amtrak and San Diego later this week.) I have had no trouble with the antibiotic and it seems to be doing the job for me. We will see how things go when I finish the bottle later this week.
A little bit about San Diego. I am walking in the pool everyday. I am eating well and often. I feel good and not as tired. Our wonderful friends/hosts Richard and Luis are really taking good care of me. We eat out, Richard cooks for me, and today Luis' family is coming for a pool party and to see me.
Internet is spotty, I thinks our computers are home bodies and don't like traveling. I will post a blog with pictures when we get home. I don't want to be in the middle of posting and lose internet connection for several hours. That is not good for my blood pressure.
Friday, June 5, 2015
A quick health update
This has been a tiring yet great week. My brother and his wife were here to celebrate my birthday. So I did more walking, sitting without my legs up, and I am paying for that.
This was chemo week.. Platelet count was really low, They were going to give me blood but I had no dangerous symptoms. They decided to go on with chemo as planned. The combo of low platelets and chemo made me really tired. Also I have had light nausea and swollen feet and legs. Nothing horrible, but more side effects than usual.
As I mentioned the doctor is letting me fly to see Marty's brother. I really am not fond of flying so prayers requested for tonight and a week from Saturday flights. I do have good drugs so I won't run screaming down the aisle, maybe.
I really am tired, and worry a bit about this trip. I hope to pep up as I get further from the chemo. Keep your fingers crossed.
This was chemo week.. Platelet count was really low, They were going to give me blood but I had no dangerous symptoms. They decided to go on with chemo as planned. The combo of low platelets and chemo made me really tired. Also I have had light nausea and swollen feet and legs. Nothing horrible, but more side effects than usual.
As I mentioned the doctor is letting me fly to see Marty's brother. I really am not fond of flying so prayers requested for tonight and a week from Saturday flights. I do have good drugs so I won't run screaming down the aisle, maybe.
I really am tired, and worry a bit about this trip. I hope to pep up as I get further from the chemo. Keep your fingers crossed.
Sunday, May 24, 2015
Weekly health update
Sunday I went to church for the first time since October. I wore my gloves and mask, and our minister asked people not to touch me, just wave, fake a hug, or bow to me. It was very emotional for me, and very physically tiring. We no longer live close to the church, it can be a 30 to 45 minute drive depending on traffic. We had brunch before we came home. I was worn out by the time we got home. I took a 5 hour nap to recover. I won't be going often, but at least I can go.
Monday I saw my oncologist and she dropped the dreaded words CT Scan. Just in case you missed the last one, click here. I started into panic mode, and then thought I am a big girl, I have to do these regularly, so just do it. Sometime in the next three weeks I will have it done. Joy.
She was pleased with how well I am doing. I am so much better on this chemo than the one before Christmas. She is letting me plan further ahead than a couple of days. We have a trip by plane to go to Dallas and visit Marty's brother. Then we are going to San Diego on Amtrak to see friends and Marty to watch a Billiards Tournament. The train trip will be beautiful and not as tiring/stressful as other ways of getting there.
I continue to walk 30 minutes nearly every day. I cook, dust periodically, change the bed, and other domestic duties. But this week I was really really tired. I slept more during the day than I have recently. Also my taste buds are going bonkers. I can eat anything without getting sick, but the food just tastes wrong. ( Before Christmas I couldn't get food down.) This time I can eat, it just isn't as enjoyable. Although ice cream and hot fudge still tastes great.
Sometimes I feel as if I am on borrowed time. Many many pancreatic cancer patients don't make it 6 months after diagnoses. I am far into my 8th month. I have the feeling some days of so much to do while I can, other days I think just get through today why bother. But I don't stay down long. You gotta be positive, you gotta laugh.
Overall, I am happy, I have no pain, I am not deathly ill as pre Christmas. I'm doing good, and I thank my prayer warriors. You all are amazing with what you are doing for me.
Monday I saw my oncologist and she dropped the dreaded words CT Scan. Just in case you missed the last one, click here. I started into panic mode, and then thought I am a big girl, I have to do these regularly, so just do it. Sometime in the next three weeks I will have it done. Joy.
She was pleased with how well I am doing. I am so much better on this chemo than the one before Christmas. She is letting me plan further ahead than a couple of days. We have a trip by plane to go to Dallas and visit Marty's brother. Then we are going to San Diego on Amtrak to see friends and Marty to watch a Billiards Tournament. The train trip will be beautiful and not as tiring/stressful as other ways of getting there.
I continue to walk 30 minutes nearly every day. I cook, dust periodically, change the bed, and other domestic duties. But this week I was really really tired. I slept more during the day than I have recently. Also my taste buds are going bonkers. I can eat anything without getting sick, but the food just tastes wrong. ( Before Christmas I couldn't get food down.) This time I can eat, it just isn't as enjoyable. Although ice cream and hot fudge still tastes great.
Sometimes I feel as if I am on borrowed time. Many many pancreatic cancer patients don't make it 6 months after diagnoses. I am far into my 8th month. I have the feeling some days of so much to do while I can, other days I think just get through today why bother. But I don't stay down long. You gotta be positive, you gotta laugh.
Overall, I am happy, I have no pain, I am not deathly ill as pre Christmas. I'm doing good, and I thank my prayer warriors. You all are amazing with what you are doing for me.
Tuesday, May 19, 2015
Yes I did, I just played the cancer card
Today was chemo day and per usual the pharmacy did not have my meds ready on time. They were only an hour late today. Again Marty went home to work, and came back later for me.
I order my Lovenox (blood thinner) online and then plan to pick it up on chemo day. Because it is prefilled syringes it can not be mailed. Of course it is never ready and we have to wait, sometimes over an hour. Sometimes they don't have any and have to order it. Then we have to come back in a couple of days. That is why I always order way before I am running low. When we arrive to pick it up, then they tell us sorry. Hello, let me know before hand. We have decided I am the only Kaiser patient taking this drug. Other Kaiser pharmacies never have it in stock either.
I had ordered online, picked the pharmacy I wanted, and clicked checkout. We were sure it wouldn't be ready, but went to get it after my chemo infusion. We check in and guess what, order not filled. I was pissed off. Sweet gentle Marty, who never gets real mad, was livid. The clerk was going to check if they had enough or if they would have to order it.
She came back and said yes they had enough, but it would take at least 15 minutes to fill. We have already waited 10 minutes. And the line to pick up is about 30 minutes long. Been there often enough to know where you don't want to be standing. It is past 1:30 and I haven't had lunch because of chemo running late. My sister in law says something like, " Never get between a Triplett (maiden name) and food."
I am tired, hungry, and have my I hate Kaiser Pharmacy pants on. This is not going well. I tell her this happens ever time we come. Never ready, why should I bother ordering on line as they ask patients to? She says she will have them call my name when it is filled and I won't have to stand in the pick up line. This will only take 15 minutes. Then I did it.
I looked her in the eye and said, "I just came from chemo and I am fading fast!" She walked over picked up the Lovenox and let me pay at her window. I did not lie, I did not exaggerate, and I did not become a screaming crazy woman.
I will save my other cancer cards for other stressful stupid events. It worked and I know I can't abuse these cards. But if you've got cancer, you might as well use it to your advantage. Hmmm wonder if I could score reservations at fancy restaurants?
I order my Lovenox (blood thinner) online and then plan to pick it up on chemo day. Because it is prefilled syringes it can not be mailed. Of course it is never ready and we have to wait, sometimes over an hour. Sometimes they don't have any and have to order it. Then we have to come back in a couple of days. That is why I always order way before I am running low. When we arrive to pick it up, then they tell us sorry. Hello, let me know before hand. We have decided I am the only Kaiser patient taking this drug. Other Kaiser pharmacies never have it in stock either.
I had ordered online, picked the pharmacy I wanted, and clicked checkout. We were sure it wouldn't be ready, but went to get it after my chemo infusion. We check in and guess what, order not filled. I was pissed off. Sweet gentle Marty, who never gets real mad, was livid. The clerk was going to check if they had enough or if they would have to order it.
She came back and said yes they had enough, but it would take at least 15 minutes to fill. We have already waited 10 minutes. And the line to pick up is about 30 minutes long. Been there often enough to know where you don't want to be standing. It is past 1:30 and I haven't had lunch because of chemo running late. My sister in law says something like, " Never get between a Triplett (maiden name) and food."
I am tired, hungry, and have my I hate Kaiser Pharmacy pants on. This is not going well. I tell her this happens ever time we come. Never ready, why should I bother ordering on line as they ask patients to? She says she will have them call my name when it is filled and I won't have to stand in the pick up line. This will only take 15 minutes. Then I did it.
I looked her in the eye and said, "I just came from chemo and I am fading fast!" She walked over picked up the Lovenox and let me pay at her window. I did not lie, I did not exaggerate, and I did not become a screaming crazy woman.
I will save my other cancer cards for other stressful stupid events. It worked and I know I can't abuse these cards. But if you've got cancer, you might as well use it to your advantage. Hmmm wonder if I could score reservations at fancy restaurants?
Sunday, May 10, 2015
Chemo problems and a health update.
Monday I had lab work. I was emailed the results in a little over an hour. I didn't think they would give me chemo on Tuesday, the platelet count was not in the normal range. But they didn't call and cancel me. They said though low, still in a safe range.
When I checked in Glenda ( Kaiser clerk who is blog worthy ) told me the pharmacy was running an hour late. But they would start me on the anti nausea meds, take vitals, and start the saline IV. That was fine with me. The anti nausea has to be taken 30 minutes before the chemo, so not an issue.
WRONG!!!!
Two hours and 45 minutes later the chemo meds finally arrived. The nurses were going crazy. All the chairs were full, the waiting room had people, they were backed up and nothing the nurses could do. They would come in my room and see if I wanted to watch TV, did I need something to drink, was I OK. They kept saying they were so sorry. I told them not their fault, but I did want to yell and curse at someone. I asked if I could curse for them.
Once I had my two bags of chemo, Marty picked me up and took me to lunch, at 2:30. I was starving. And just a little tired. Who knew sitting for hours could be so tiring.
I haven't had any bad side effects other than being very tired this week. This week the tiredness didn't ever really get better. Even today I feel tired. As I have said chemo is accumulative and this was the last treatment of a three week round. Next week no chemo, so I will bounce back I am sure.
My appetite is good. Chemo brain is still a problem, I do and say some dumb things. I am walking nearly every day for 30 minutes. I cooked most nights this past week, and when I didn't cook I washed up the dishes. I even changed the sheets all by myself. So I am doing good.
We are planning a couple of trips this summer. I was surprised the oncologist OKed them. One of the trips is 2 1/2 months out. This is huge for me. I have made few plans over a week out. I pretty much just try to get through each day and start over the next day.
I plan to talk to the doctor again about to church. She has let me go to out eat, ride BART, and says I can fly for one of the trips. It seems strangers are safer than friends. Strangers don't hug me, touch me, kiss me. Strangers just are there. It has been suggested if I go to church that I hang a sign around my neck that says, Do Not Touch.
When I checked in Glenda ( Kaiser clerk who is blog worthy ) told me the pharmacy was running an hour late. But they would start me on the anti nausea meds, take vitals, and start the saline IV. That was fine with me. The anti nausea has to be taken 30 minutes before the chemo, so not an issue.
WRONG!!!!
Two hours and 45 minutes later the chemo meds finally arrived. The nurses were going crazy. All the chairs were full, the waiting room had people, they were backed up and nothing the nurses could do. They would come in my room and see if I wanted to watch TV, did I need something to drink, was I OK. They kept saying they were so sorry. I told them not their fault, but I did want to yell and curse at someone. I asked if I could curse for them.
Once I had my two bags of chemo, Marty picked me up and took me to lunch, at 2:30. I was starving. And just a little tired. Who knew sitting for hours could be so tiring.
I haven't had any bad side effects other than being very tired this week. This week the tiredness didn't ever really get better. Even today I feel tired. As I have said chemo is accumulative and this was the last treatment of a three week round. Next week no chemo, so I will bounce back I am sure.
My appetite is good. Chemo brain is still a problem, I do and say some dumb things. I am walking nearly every day for 30 minutes. I cooked most nights this past week, and when I didn't cook I washed up the dishes. I even changed the sheets all by myself. So I am doing good.
We are planning a couple of trips this summer. I was surprised the oncologist OKed them. One of the trips is 2 1/2 months out. This is huge for me. I have made few plans over a week out. I pretty much just try to get through each day and start over the next day.
I plan to talk to the doctor again about to church. She has let me go to out eat, ride BART, and says I can fly for one of the trips. It seems strangers are safer than friends. Strangers don't hug me, touch me, kiss me. Strangers just are there. It has been suggested if I go to church that I hang a sign around my neck that says, Do Not Touch.
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