I just wanted to tell you that I love hearing from everyone - cards, calls, emails, visits, Facebook, etc. Please don't ever feel like you are going to bother me by contacting me!
And in case you're wondering I still have my hair - just a lot less hair than I've ever had (mostly cos I've cut a lot of it off). And it is straight, which is probably a bigger shock to me when I look in the mirror than to anyone else. So I have a wig, but for the most part have not been wearing it.
Like the poem I have says - I have cancer, but cancer does NOT have me!
XOXO
Tuesday, October 18, 2011
Catching Up
I have a lot of catching up to do, since a lot has happened since I last wrote about my treatments, etc. First off though, I must say that I did get to go to one of Brody's soccer games on the 10th of September. It was one of those warm days and the game was at 11:30 a.m., so mostly Brant and I sat in the shade of a big tree and watched what was going on from there. Jeff came and got me, we got lunch after the game, and then Jeff brought me back home again. It was a great day!
As I said, I started my first chemo treatment on the 12th of September. I did end up with some mouth sores by the end of the week, so I asked for a prescription for magic mouthwash the next week. I also had some vomiting, but Dr. H thought those were too far away from the treatment to be a side effect ?!? Probably just me and my sensitive stomach. On the "off" weeks I have to go get bloodwork done, so I did that on September 19. I did the second chemo treatment on September 26 . . . and the only side effect that I had after that was a sensitivity to cold in my hands. This is a very strange feeling! I have a feeling that this winter I may have to carry my gloves ALL the time and may have to keep some hand warmers on me too. I also have to be careful about drinking anything too cold, as it makes my throat feel a little strange.
On a side note - we have a couple of friends that are also going through chemo treatments now - and our prayers continue to go out to Carole and Brian.
Normally GOTRA has hosted an open the first weekend in October - the Cornhusker Vintage Nationals - where we invite all different types of cars to come and have a fun weekend at US30 Speedway in Columbus, NE (our home track). 2011 would have been the 9th Annual Cornhusker Vintage Nationals. This has been a pretty big deal - normally between 50 and 75 cars plus the people that come with the cars, plus the people in the grandstands, so we have to deal with registrations, t-shirts, hats, organizing the different types of cars into their own heats, typing up info for the announcer, pit gates, food, etc. etc. - we get a lot of our group participating, but also people from all over the United States. We usually did an informal get-together on Friday night, a free Swap Meet on Saturday morning, with races in the afternoon and evening - donuts and coffee in the morning and lunch and dinner for the participants. Then on Sunday an informal worship service in the grandstands with continental breakfast and then races in the afternoon. So in early August I decided that with not knowing at all how I would be able to handle, or react to the chemo, I would not be able to do what I had normally done for this event. So in mid-August we notified everyone that had participated previously that it would not be happening "because of circumstances beyond our control". This was a disappointment to all of us, but it was very heart warming when people found out the reason that we couldn't do it AND what a response we got - people offered their support, their help with sponsorship, and their help for next year, etc. etc.
Now because of canceling - this gave us a free weekend. Our friend Bruce H. who normally comes to the CVN decided that he would still make the trip to Fremont that weekend to come and visit. So he and his friend Sally spent the morning with us visiting and then we went out for lunch. Two of Carrie & Justin's best friends had set their wedding date for October 1 - Carrie was the Matron of Honor and Justin was the Best Man. Well when we first found out about the date, we thought we would be in Columbus and wouldn't be able to attend - but because of the way things turned out we could go. The wedding and reception were at the Double Tree in Omaha, and we got to congratulate Joey & Monika and their parents and daughter, and also got to spend the evening with Justin & Carrie and all of the Rehder's (Kathy & Jeff, Rach & Jake, Katie & Ty) plus a few other friends! We had a great time. But by the time 8:30 rolled around I was ready to go, I also knew that we had made the right decision to cancel the CVN - I wouldn't have been able to handle it. The Arlington Community Church was holding their fourth annual fundraiser that Sunday and they always have a Car Show in the afternoon - GOTRA has sponsored plaques for the Car Show, but we had never been able to attend. So this year, John & Jeff took their stock cars over to put on display for some PR for the group. Brody spent the afternoon with Dad & Papa and Brant spent the afternoon with Grandma!
Again on the 3rd of October I had bloodwork done - including the bloodwork that was needed for my pre-op physical. (I had the bright idea that I could do all of the bloodwork through the port instead of having to get poked - and I could!) Each time I go in either for a treatment or for the bloodwork, they check my blood pressure. We were keeping track of it from the 26th of September (it was very low on that day) to October 3 to October 5. I also had a day that I had light headedness and jelly knees - so once again I was taken off my blood pressure medication. Dr. S and I will keep a handle on this! On Wednesday, October 5 I had my pre-op physical done for the surgery on the 10th. I also got both my flu shot and my pneumonia shot that day - and boy did I have a sore arm the next morning!
Jeff brought Brody to town on the 9th of October - so that he could help Grandma get out her Halloween stuff and spend the night. As always, we had a great time! Fun decorating, a little outside time, and then some movie, snuggling time. We didn't get up in time to make it to Sunday School the next morning, but we did go to 11:00 a.m. church - and Carrie and Justin met us there. There was a Congregational Meeting after worship for the Election of Officers - our Elders and Deacons for the next three year term. Carrie was elected as a Deacon for the Class of 2014!
We had to be at Methodist Hospital at 9:00 a.m. on the morning of Monday, October 10 - John and I, Carrie and Jeff met with Dr. Bill for a visit and a prayer before I checked in, which was a very pleasant surprise! My surgery was scheduled for 11:00 a.m. The surgery only lasted an hour (they expected two), I'm not even sure how long I spent in recovery. I ended up in room 603 bed 1 - with a roommate in bed 2. There was little or no contact with this roommate (who was recovering from gallbladder surgery) or her mother who was there with her (roommate was about 40, mom was about 60). She got to go home on Tuesday morning. SO I moved to bed 2 by the window - which is the better of the two beds by the way! My second roommate came in Tuesday afternoon - she had bowel obstruction surgery. This roommate was very chatty, and we found out we had a lot of things in common. She was so sweet, she sent home a red rose that she had been given by a hospital volunteer home with me. I had calls and visits from my family, my grandsons and other people, but I had a couple of special visits on Wednesday - fellow staff member Paul Valla came for a visit and brought some beautiful mums, and then my cousin Curtis and his wife Barb from Colorado came for a visit and brought a beautiful basket of pansies and decorative plants (that I will be able to plant outside next spring)! Curt & Barb were in NE because unfortunately my uncle Calvin had just been back in Methodist Hospital - as a matter of fact, he was being checked out on Monday about the time my surgery was getting over! Please keep my uncle and aunt and their family in your prayers too! Many of the nurses and aides had been the same ones that had been there in June so that was fun to get reacquainted. Even met a nurses aide that has been friends with the Rehder's for years! We had talked on Thursday that things were going so well that I probably would get to go home on Friday - and when Dr. B came in Friday morning she couldn't see any reason that I shouldn't go home - WOO HOO! My roommate was checked out just a few minutes before I was on Friday. This surgery was so much easier than the first - I only had one vomiting episode very early on (but that's me!). Had no problems when they took the catheter out this time. Having a room with only one bathroom and two people using it was sometimes a problem! But for the most part everything went exactly as expected. I came home with no prescriptions and had to have no tests while I was there - now that's a great hospital stay!! Plus only 5 days in the hospital is much better than 11 days. The recup at home has been much better this time than last too, believe me. I am getting a lot of exercise going back and forth to the bathroom - and my 15 month old grandson and I have a lot in common these days with our underwear choices. lol And may I also say that I don't miss that ilesotomy bag one little bit - I'll take the Depends over it any day! Dr. B thought I would need a couple of weeks recup in order to get my body back in sync with what it is supposed to do, rather than what it has been doing from the 20th of June through the 10th of October. I will see her in about three weeks to see how things are going.
One more thing - keep my sis Denise in your prayers too - she couldn't come and stay with me during this hospital stay cos she's been fighting some back problems. Hopefully she will find out soon what they can do to take care of the pain that she has been having!
As I said, I started my first chemo treatment on the 12th of September. I did end up with some mouth sores by the end of the week, so I asked for a prescription for magic mouthwash the next week. I also had some vomiting, but Dr. H thought those were too far away from the treatment to be a side effect ?!? Probably just me and my sensitive stomach. On the "off" weeks I have to go get bloodwork done, so I did that on September 19. I did the second chemo treatment on September 26 . . . and the only side effect that I had after that was a sensitivity to cold in my hands. This is a very strange feeling! I have a feeling that this winter I may have to carry my gloves ALL the time and may have to keep some hand warmers on me too. I also have to be careful about drinking anything too cold, as it makes my throat feel a little strange.
On a side note - we have a couple of friends that are also going through chemo treatments now - and our prayers continue to go out to Carole and Brian.
Normally GOTRA has hosted an open the first weekend in October - the Cornhusker Vintage Nationals - where we invite all different types of cars to come and have a fun weekend at US30 Speedway in Columbus, NE (our home track). 2011 would have been the 9th Annual Cornhusker Vintage Nationals. This has been a pretty big deal - normally between 50 and 75 cars plus the people that come with the cars, plus the people in the grandstands, so we have to deal with registrations, t-shirts, hats, organizing the different types of cars into their own heats, typing up info for the announcer, pit gates, food, etc. etc. - we get a lot of our group participating, but also people from all over the United States. We usually did an informal get-together on Friday night, a free Swap Meet on Saturday morning, with races in the afternoon and evening - donuts and coffee in the morning and lunch and dinner for the participants. Then on Sunday an informal worship service in the grandstands with continental breakfast and then races in the afternoon. So in early August I decided that with not knowing at all how I would be able to handle, or react to the chemo, I would not be able to do what I had normally done for this event. So in mid-August we notified everyone that had participated previously that it would not be happening "because of circumstances beyond our control". This was a disappointment to all of us, but it was very heart warming when people found out the reason that we couldn't do it AND what a response we got - people offered their support, their help with sponsorship, and their help for next year, etc. etc.
Now because of canceling - this gave us a free weekend. Our friend Bruce H. who normally comes to the CVN decided that he would still make the trip to Fremont that weekend to come and visit. So he and his friend Sally spent the morning with us visiting and then we went out for lunch. Two of Carrie & Justin's best friends had set their wedding date for October 1 - Carrie was the Matron of Honor and Justin was the Best Man. Well when we first found out about the date, we thought we would be in Columbus and wouldn't be able to attend - but because of the way things turned out we could go. The wedding and reception were at the Double Tree in Omaha, and we got to congratulate Joey & Monika and their parents and daughter, and also got to spend the evening with Justin & Carrie and all of the Rehder's (Kathy & Jeff, Rach & Jake, Katie & Ty) plus a few other friends! We had a great time. But by the time 8:30 rolled around I was ready to go, I also knew that we had made the right decision to cancel the CVN - I wouldn't have been able to handle it. The Arlington Community Church was holding their fourth annual fundraiser that Sunday and they always have a Car Show in the afternoon - GOTRA has sponsored plaques for the Car Show, but we had never been able to attend. So this year, John & Jeff took their stock cars over to put on display for some PR for the group. Brody spent the afternoon with Dad & Papa and Brant spent the afternoon with Grandma!
Again on the 3rd of October I had bloodwork done - including the bloodwork that was needed for my pre-op physical. (I had the bright idea that I could do all of the bloodwork through the port instead of having to get poked - and I could!) Each time I go in either for a treatment or for the bloodwork, they check my blood pressure. We were keeping track of it from the 26th of September (it was very low on that day) to October 3 to October 5. I also had a day that I had light headedness and jelly knees - so once again I was taken off my blood pressure medication. Dr. S and I will keep a handle on this! On Wednesday, October 5 I had my pre-op physical done for the surgery on the 10th. I also got both my flu shot and my pneumonia shot that day - and boy did I have a sore arm the next morning!
Jeff brought Brody to town on the 9th of October - so that he could help Grandma get out her Halloween stuff and spend the night. As always, we had a great time! Fun decorating, a little outside time, and then some movie, snuggling time. We didn't get up in time to make it to Sunday School the next morning, but we did go to 11:00 a.m. church - and Carrie and Justin met us there. There was a Congregational Meeting after worship for the Election of Officers - our Elders and Deacons for the next three year term. Carrie was elected as a Deacon for the Class of 2014!
We had to be at Methodist Hospital at 9:00 a.m. on the morning of Monday, October 10 - John and I, Carrie and Jeff met with Dr. Bill for a visit and a prayer before I checked in, which was a very pleasant surprise! My surgery was scheduled for 11:00 a.m. The surgery only lasted an hour (they expected two), I'm not even sure how long I spent in recovery. I ended up in room 603 bed 1 - with a roommate in bed 2. There was little or no contact with this roommate (who was recovering from gallbladder surgery) or her mother who was there with her (roommate was about 40, mom was about 60). She got to go home on Tuesday morning. SO I moved to bed 2 by the window - which is the better of the two beds by the way! My second roommate came in Tuesday afternoon - she had bowel obstruction surgery. This roommate was very chatty, and we found out we had a lot of things in common. She was so sweet, she sent home a red rose that she had been given by a hospital volunteer home with me. I had calls and visits from my family, my grandsons and other people, but I had a couple of special visits on Wednesday - fellow staff member Paul Valla came for a visit and brought some beautiful mums, and then my cousin Curtis and his wife Barb from Colorado came for a visit and brought a beautiful basket of pansies and decorative plants (that I will be able to plant outside next spring)! Curt & Barb were in NE because unfortunately my uncle Calvin had just been back in Methodist Hospital - as a matter of fact, he was being checked out on Monday about the time my surgery was getting over! Please keep my uncle and aunt and their family in your prayers too! Many of the nurses and aides had been the same ones that had been there in June so that was fun to get reacquainted. Even met a nurses aide that has been friends with the Rehder's for years! We had talked on Thursday that things were going so well that I probably would get to go home on Friday - and when Dr. B came in Friday morning she couldn't see any reason that I shouldn't go home - WOO HOO! My roommate was checked out just a few minutes before I was on Friday. This surgery was so much easier than the first - I only had one vomiting episode very early on (but that's me!). Had no problems when they took the catheter out this time. Having a room with only one bathroom and two people using it was sometimes a problem! But for the most part everything went exactly as expected. I came home with no prescriptions and had to have no tests while I was there - now that's a great hospital stay!! Plus only 5 days in the hospital is much better than 11 days. The recup at home has been much better this time than last too, believe me. I am getting a lot of exercise going back and forth to the bathroom - and my 15 month old grandson and I have a lot in common these days with our underwear choices. lol And may I also say that I don't miss that ilesotomy bag one little bit - I'll take the Depends over it any day! Dr. B thought I would need a couple of weeks recup in order to get my body back in sync with what it is supposed to do, rather than what it has been doing from the 20th of June through the 10th of October. I will see her in about three weeks to see how things are going.
One more thing - keep my sis Denise in your prayers too - she couldn't come and stay with me during this hospital stay cos she's been fighting some back problems. Hopefully she will find out soon what they can do to take care of the pain that she has been having!
Monday, October 17, 2011
A couple of expanations
I thought I should explain why I was so excited about doing some mowing over Labor Day weekend.
I have normally done all the mowing at our house for quite a long time . . . except for last year after my hysterectomy in May - and this year! So not only does John mow the main lawn at church twice a month, he mows the south lot about once a week (every other if he's lucky) AND he gets to mow the lawn at home. He is quite a guy - never complains about any of the things on his "to do" list. That's why I love the guy so much!
The other thing I needed to explain was what all of my family was doing at my house on a Thursday at noon. Well the explanation was that they had attended my mother's funeral that morning. Now - before you ask why they weren't at the funeral lunch - it's kind of a long story, but let me see if I can give you the shortened version. When my dad died, neither Denise or I were involved in any of the planning and let me tell you that we were treated very badly at the funeral. I had made my mind up a long time ago that when my mom died, I was not going to the funeral - it wouldn't matter one way or the other because I would be "wrong" no matter what choice I made. Denise and her family {sans spouses} attended. Neither John nor I or Carrie attended, but Marlene and Jeff did. Now, let me also explain that had my bff Marlene not been here visiting when this all happened - we would not have known that my mom died until the Tribune came out and we saw the obit! Someone had called Marlene's mom in Illinois to let her know what was going on, and then Marlene's daughter let her know! Neither Denise or I or any of our families were listed in the obit (so that more than half of the actual "family" was not listed). Now please don't get me wrong - I have grieved for the loss of my mother - I just grieved a long time ago!
I have normally done all the mowing at our house for quite a long time . . . except for last year after my hysterectomy in May - and this year! So not only does John mow the main lawn at church twice a month, he mows the south lot about once a week (every other if he's lucky) AND he gets to mow the lawn at home. He is quite a guy - never complains about any of the things on his "to do" list. That's why I love the guy so much!
The other thing I needed to explain was what all of my family was doing at my house on a Thursday at noon. Well the explanation was that they had attended my mother's funeral that morning. Now - before you ask why they weren't at the funeral lunch - it's kind of a long story, but let me see if I can give you the shortened version. When my dad died, neither Denise or I were involved in any of the planning and let me tell you that we were treated very badly at the funeral. I had made my mind up a long time ago that when my mom died, I was not going to the funeral - it wouldn't matter one way or the other because I would be "wrong" no matter what choice I made. Denise and her family {sans spouses} attended. Neither John nor I or Carrie attended, but Marlene and Jeff did. Now, let me also explain that had my bff Marlene not been here visiting when this all happened - we would not have known that my mom died until the Tribune came out and we saw the obit! Someone had called Marlene's mom in Illinois to let her know what was going on, and then Marlene's daughter let her know! Neither Denise or I or any of our families were listed in the obit (so that more than half of the actual "family" was not listed). Now please don't get me wrong - I have grieved for the loss of my mother - I just grieved a long time ago!
Thursday, September 15, 2011
And away we go . . .
My daughter gently (?) reminded me that I really needed to update my blog - so I am. Let's say that I've been busy!
The last couple of weeks have been a real roller coaster - even more so than I would have every guessed. The kids had been helping get the house put back together after our major re-do - so they got the dining room all set up and we have an upstairs guest room that we can even use for a guest room. Well, little did I know that part of the reason they wanted to get things put back together was that they were planning a major surprise for me. They had talked with my bff Marlene and she showed up at the pizza party we had planned with the kids and grandkids on Sunday, August 28 - after Carrie & Justin brought her here from the airport. Well needless to say I was very surprised. Since we weren't going to be able to meet up at Mt. Pleasant, IA we were going to have to miss our yearly get-together. That was also the reason that they had persuaded me NOT to start chemo until after Labor Day - although that really didn't take too much persuasion! Of course no one told me that I needed to take a little time off work cos I was going to have company - so Marlene went with me to work on Monday so I could do paychecks. Tuesday was Dr. Bill's last Staff Meeting with us, so we had a little party at church - and John & Marlene did some running around - seeing Marlene's old houses on H Street and Irving Street, etc. and chasing after some of the black squirrels in our neighborhood so that Marlene could get a picture of one to take home to show her family. Carrie joined the three of us for lunch at Gringo's and then the three of us girls made a couple of stops in Fremont before we took off for Omaha to go to Bravada's to check out wigs. Well that we did, and I found one that the girls thought I looked really good in and that matched the natural color of my hair. (One of the side effects of the chemo that I took from the pump before was hair thinning, and the texture of my hair has gotten real thin - and since I can't do a perm because of the upcoming chemo - Carrie thought we needed to go check out wigs while I was still feeling good and having Marlene here was just an added bonus.) I needed to get a prescription for it from the oncologist, and needed to check with the insurance company too. Wednesday was Dr. Bill's official last day and also John & I's 37th wedding anniversary - and we did a cook out here with our company, and also Pat & Denise came to town to join us too. I got to meet my new boss, Jon Ashley on Thursday morning - the first time in person cos unfortuately I couldn't be at church the day he candidated - we were still trying to figure out the wafer for the ileostomy bag at that point. I really like him - he is very calm and laid back! Thursday we had lunch together at our house with Marlene, Jeff, Carrie, John, me, Pat, Denise, Randy, Brian, Chrissy and Amber (my nephews & nieces) - there's a reason that we were all together, but I'll put that in another post. Then we had to have Marlene back to the airport by about 4:30 p.m. so that she could catch her 5:45 flight. Friday I spent the day at work resting up - I must have done one too many trips up to the balcony that day though, cos I had started down the hallway with some paperwork to put in one of the committee boxes and my legs started feeling weird - so I went back and grabbed the first chair I could find. It went away pretty quickly - I call it "jelly knees" and they show up periodically - sometimes I wake up with them! On Saturday the 3rd I decided I needed to do some work outside on the rosebushes, so with gloves and pruner in hand, I cleaned them all up. Sunday John & I went to modern worship - then in the afternoon Jeff took #13 to US30 Speedway to try the new 6 cylinder out, Jill and the boys went with him too. John took #31 too so Jeff could chase him around the track - and I went too. Because there were only 4 cars - the 2 GOTRA cars, a late model and a modified, we could park real close to the pit grandstand area. I helped Jill try to keep an eye on Brody & Brant. When we got done there, we all went to Pat & Denise's for a cookout - what a good time. I was tired when we got home, but nothing too bad. Then on Monday I decided that I really felt good and wanted to see how much energy I had - so I started mowing the lawn. I didn't mow all of it, but I mowed a big share of it. Once again I went to work on Tuesday to rest up. On Wednesday, John and I went to see Dr. B - she had good results from the test I did at Methodist and so we set the date to reverse (or take down I guess in medical terminology) the ileostomy - that will happen in October. She thought things were coming along very well and was very pleased with how the recup after surgery had gone. For that surgery I will be in the hospital for 2 or 3 days (not counting the day of surgery) and will spend a couple of weeks recuperating. During that time, I will not have chemo either.
Speaking of chemo, I saw Dr. H on Monday, September 12 - my son's 35th birthday. He did an exam and then they sent me off to take some blood and then start the infusion - it takes 2 hours and 15 minutes - we started at 2:00 and got done at 4:15. (The port worked great - this one has been day & night different from the other one.) After that was done, they hooked me up to the pump (this is the same chemo that I had before in the pump but I will only wear it for 46 hours instead of 7 days like before). I went back in on Wednesday afternoon to get the pump taken off. It was "relearning" what to do with the pump - like to remember to take it with me when I get up in the middle of the night. I lay the bag on my sewing chest next to the bed at night - otherwise, I have the strap over my shoulder. It is a lot easier to only wear it for 46 hours as opposed to every day! The weeks that I am doing the chemo treatments are the weeks that John has Monday off, so that he can go with me (at least for the first few) to see how I tolerate things. I picked up the RX for the wig on Monday - and after we got done at the oncologist's office John & I went to Omaha to pick up the wig that I had ordered the week before. Then we went to Fazoli's to eat - my fav Italian restaurant! By that time I was feeling pretty tired so we headed back home. On Tuesday I went and got my hair cut - so now I have straight hair - I haven't had straight hair since I got all the long stuff cut off when Jeff was about 2. So far I have been wearing it like this - don't know when I'll break out the wig. It is certainly different when I look in the mirror! I also thought maybe getting it cut a little shorter will help with putting it up under the wig. Today is Thursday and - knock on wood - so far no side effects from the chemo. I have been spending a little more time resting this week and going to bed early and a couple of days taking a little rest after lunch. Yesterday I spent an hour or so on the phone with my cousin Curt from CO - so that was a little extra rest time too. So . . . I will keep you posted on how the second treatment goes!
The last couple of weeks have been a real roller coaster - even more so than I would have every guessed. The kids had been helping get the house put back together after our major re-do - so they got the dining room all set up and we have an upstairs guest room that we can even use for a guest room. Well, little did I know that part of the reason they wanted to get things put back together was that they were planning a major surprise for me. They had talked with my bff Marlene and she showed up at the pizza party we had planned with the kids and grandkids on Sunday, August 28 - after Carrie & Justin brought her here from the airport. Well needless to say I was very surprised. Since we weren't going to be able to meet up at Mt. Pleasant, IA we were going to have to miss our yearly get-together. That was also the reason that they had persuaded me NOT to start chemo until after Labor Day - although that really didn't take too much persuasion! Of course no one told me that I needed to take a little time off work cos I was going to have company - so Marlene went with me to work on Monday so I could do paychecks. Tuesday was Dr. Bill's last Staff Meeting with us, so we had a little party at church - and John & Marlene did some running around - seeing Marlene's old houses on H Street and Irving Street, etc. and chasing after some of the black squirrels in our neighborhood so that Marlene could get a picture of one to take home to show her family. Carrie joined the three of us for lunch at Gringo's and then the three of us girls made a couple of stops in Fremont before we took off for Omaha to go to Bravada's to check out wigs. Well that we did, and I found one that the girls thought I looked really good in and that matched the natural color of my hair. (One of the side effects of the chemo that I took from the pump before was hair thinning, and the texture of my hair has gotten real thin - and since I can't do a perm because of the upcoming chemo - Carrie thought we needed to go check out wigs while I was still feeling good and having Marlene here was just an added bonus.) I needed to get a prescription for it from the oncologist, and needed to check with the insurance company too. Wednesday was Dr. Bill's official last day and also John & I's 37th wedding anniversary - and we did a cook out here with our company, and also Pat & Denise came to town to join us too. I got to meet my new boss, Jon Ashley on Thursday morning - the first time in person cos unfortuately I couldn't be at church the day he candidated - we were still trying to figure out the wafer for the ileostomy bag at that point. I really like him - he is very calm and laid back! Thursday we had lunch together at our house with Marlene, Jeff, Carrie, John, me, Pat, Denise, Randy, Brian, Chrissy and Amber (my nephews & nieces) - there's a reason that we were all together, but I'll put that in another post. Then we had to have Marlene back to the airport by about 4:30 p.m. so that she could catch her 5:45 flight. Friday I spent the day at work resting up - I must have done one too many trips up to the balcony that day though, cos I had started down the hallway with some paperwork to put in one of the committee boxes and my legs started feeling weird - so I went back and grabbed the first chair I could find. It went away pretty quickly - I call it "jelly knees" and they show up periodically - sometimes I wake up with them! On Saturday the 3rd I decided I needed to do some work outside on the rosebushes, so with gloves and pruner in hand, I cleaned them all up. Sunday John & I went to modern worship - then in the afternoon Jeff took #13 to US30 Speedway to try the new 6 cylinder out, Jill and the boys went with him too. John took #31 too so Jeff could chase him around the track - and I went too. Because there were only 4 cars - the 2 GOTRA cars, a late model and a modified, we could park real close to the pit grandstand area. I helped Jill try to keep an eye on Brody & Brant. When we got done there, we all went to Pat & Denise's for a cookout - what a good time. I was tired when we got home, but nothing too bad. Then on Monday I decided that I really felt good and wanted to see how much energy I had - so I started mowing the lawn. I didn't mow all of it, but I mowed a big share of it. Once again I went to work on Tuesday to rest up. On Wednesday, John and I went to see Dr. B - she had good results from the test I did at Methodist and so we set the date to reverse (or take down I guess in medical terminology) the ileostomy - that will happen in October. She thought things were coming along very well and was very pleased with how the recup after surgery had gone. For that surgery I will be in the hospital for 2 or 3 days (not counting the day of surgery) and will spend a couple of weeks recuperating. During that time, I will not have chemo either.
Speaking of chemo, I saw Dr. H on Monday, September 12 - my son's 35th birthday. He did an exam and then they sent me off to take some blood and then start the infusion - it takes 2 hours and 15 minutes - we started at 2:00 and got done at 4:15. (The port worked great - this one has been day & night different from the other one.) After that was done, they hooked me up to the pump (this is the same chemo that I had before in the pump but I will only wear it for 46 hours instead of 7 days like before). I went back in on Wednesday afternoon to get the pump taken off. It was "relearning" what to do with the pump - like to remember to take it with me when I get up in the middle of the night. I lay the bag on my sewing chest next to the bed at night - otherwise, I have the strap over my shoulder. It is a lot easier to only wear it for 46 hours as opposed to every day! The weeks that I am doing the chemo treatments are the weeks that John has Monday off, so that he can go with me (at least for the first few) to see how I tolerate things. I picked up the RX for the wig on Monday - and after we got done at the oncologist's office John & I went to Omaha to pick up the wig that I had ordered the week before. Then we went to Fazoli's to eat - my fav Italian restaurant! By that time I was feeling pretty tired so we headed back home. On Tuesday I went and got my hair cut - so now I have straight hair - I haven't had straight hair since I got all the long stuff cut off when Jeff was about 2. So far I have been wearing it like this - don't know when I'll break out the wig. It is certainly different when I look in the mirror! I also thought maybe getting it cut a little shorter will help with putting it up under the wig. Today is Thursday and - knock on wood - so far no side effects from the chemo. I have been spending a little more time resting this week and going to bed early and a couple of days taking a little rest after lunch. Yesterday I spent an hour or so on the phone with my cousin Curt from CO - so that was a little extra rest time too. So . . . I will keep you posted on how the second treatment goes!
Saturday, August 27, 2011
The end of August and the first of September
This upcoming week will be a roller coaster I'm afraid. John & I will celebrate our 37th anniversary on August 31 - it hardly seems possible. Not too mention that we have known each other for 39 years. Also on Wednesday we will say goodbye to our Interim Pastor Dr. Bill - he has been with us for 20 months and we have worked very well together. On Thursday, September 1 we will get our new Senior Pastor - Jon A., who is coming to us from AZ. The only constant is change, and that seems to be especially true in the church. There will be some adjustments I'm sure, but we are all anxious to start this new adventure. Our whole family had been planning a trip over Labor Day to Mt. Pleasant Iowa to meet our friends the Krivi's and their family - but unfortunately because of all this stuff going on with me, we will not be going - I know that I probably couldn't handle the trip, nor would I be able to handle all of the walking, etc., there. Of course this trip was planned long before any of this came up. We're looking at making it happen next year. Brody would like me to come to one of his first soccer games. Jeff will celebrate a birthday on September 12 and John will celebrate on September 19. I will have to contact Dr. H to see what we need to do before we start the chemo - which I would like to do on John's short week, so that he can go with me on the days when I have to do the infusion, etc. Then I'll have to see if I need a driver for the days when I have to go and get the pump unhooked. I guess I'm still in a little bit of limbo - but once things start I'll have a better idea about how all of this is going to work. And of course, I will try to keep the blog updated appropriately!
Nurse Carrie & I
Since we had such a difficult time figuring out the wafer, etc. for the ileostomy bag to begin with, I just had to report that we did finally get it figured out. A different size wafer was ordered through the pharmacy and we began using an Eakin seal (it's a brand name, but much easier to "size" than the adhesive in a tube that we were using before - we're not sure which part was the solution - but since we've been using both, there have been no problems with the bag. And I have been changing it out on my own, first under the watchful eye of the home health care nurses, and then under Carrie's watchful eye more recently. It is very helpful to have a set of eyes looking "straight" on when I am putting on the seal and the wafer, as my perspective looking down sometimes doesn't let me see how well things are fitting around the stoma. I also have to thank Nurse Carrie and Nurse Kathy R. for helping redress where the right port was while it was healing, and also dressing the left port!
My journey just got longer!
In case you missed it in the last post, Dr. H wants me to do 12 treatments (6 months of chemo) - he explained it as a recommendation from NCCN (National Cancer Coalition network or something like that). So instead of being 3/4 of the way through my journey, now I am only 1/2 way through. John and I went to see Dr. B on the 27th of July - Dr. H had sent her a letter explaining what the next plan of treatement was . . . and in her usual wonderful bedside manner explained it a whole lot better than Dr. H. The additional chemo is my "insurance policy" that the cancer won't come back. Although the tumor was gone when she did the surgery and the path reports had all come back clear, because this was an invasive type of cancer, we certainly didn't want it coming back. Well, I'll say AMEN to that! She told me that she thought we should wait until after all the chemo was done before we do the reversal of the ileostomy - I almost cried! Dr. H had told us that he would give us a "window" in the chemo to do the reversal and then give me a couple of weeks to recuperate. (The reversal surgery will mean a couple of days in the hospital and then a couple of weeks of recuperation.) John & I had finished up the appt with her and were waiting back in the inner waiting room when Dr. B came down the hallway and said - let's see how quickly you can get into Methodist to do that test - and then maybe we could do the reversal sooner. My feeling was that the sooner we do the reversal, the sooner I could go back to a more normal diet (not the low fiber diet I have to be on now with the ileostomy) - which I think would help with dealing with some of the effects of the chemo. On July 28 I went in for outpatient surgery to have the port on the right side taken out, and then went back to see Dr. L on the 8th of August to have the stitches taken out. John & I & Carrie went back to see Dr. H on August 1, and that appointment went much better than the previous one. He had the head nurse go over what the chemo regimen would look like - I will do an infusion in the office for about two hours, along with some anti-nausea meds and a calcium that they have found to make the chemo work better. After that is done, they will hook me up to a pump that will have the very same chemo that I used before - only this time I will only be hooked up for 46 hours instead of a week. This will be an every other week thing - on the "off" week I will just go in for labwork so they can keep a handle on white & red blood count, etc. If I don't tolerate this regimen, then I would do a weekly regimen with a less intense chemo. On August 10 John & I went to Methodist Hospital to do a test to see if things on the inside were healing. (I won't gross anybody out by explaining what they did to me.) The Dr. that took the x-rays and examined them sounded pretty optimistic that things looked good. Went back for a check-up with Dr. L on the 15th of August - he thought the wound where my port had been was healing very well . . . and we set up the appt to put another port in on the left hand side - for August 19. That went very well too - it seems like the worst part of both of the last surgeries was finding a good vein in my right arm (since we can't use the left arm for that or for blood pressure). The last time the anesthesiologist got it in - in the back of my wrist! I had kind of felt like I had been living in limbo for a few weeks - getting the right port out, letting it heal, putting the left port in, and letting it heal. (Dr. L & I are wondering if I might be allergic to the prep [can't think of the name right this minute] as I had some itching, etc with this port too, and they didn't use any paper tape, only silk tape.) Then waiting on the report from Methodist as to whether things are healed well enough that we could do a reversal of the ileostomy. We go back to see Dr. B on September 7, so I'm hoping that she has good news for me.
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