To All:
As they say "To good to be true"!
As well as everything has gone I guess it was only a matter of time before we reached that bump in the road, which was this last weekend. Unfortunately Ret has developed a condition called Mucositis, not uncommon however, that is basically mouth and throat sores. They are extremely painful and prevent her from ingesting anything, meaning no medications no food taken orally, and that's a bad thing. We had to admit her to the UW Medical Center on Sunday so not only could they monitor the situation but also provide her the necessary medical and nutritional supplements intravenously. In addition to the pain this condition is one where the body creates excess mucus and saliva that settles in the GI tract causing nausea and vomiting, just one more thing to deal with which causes more pain...........vicious circle! So she's pretty well medicated which makes for some funny conversations. All and all they're taking great care of her and as I have said on numerous occasions I'm blown away at the level of care and detail they provide, it's truly amazing...................maybe better said extremely comforting.
This condition should turn around in the next 3-5 days. The issue is because at the moment she's not creating any red or white blood cells, which heal the body, so until that process begins she has to deal with whats happening. They say post transplant the re-generation of cells begins around day 12 and she's at day 9, so we just have to wait but it will happen.
Ret's sister Kath, Kim Christensen and I are rotating nights at the hospital to keep an additional watch on Ret and her condition. Which I can't thank the two of them enough!!! I know it's also a good deal for Ret because that way she doesn't have my overbearing butt lording over her 24/7.
Even though I've done it before Ret wants me to thank everybody for all the cards, calls, prayers and well wishes! So there you go I'm actually doing what she told me to, because I'm actually afraid that one day she'll read all this and if I didn't man I'd be in deeeeeeeeeeeeeeeeep S---!
Love,
Ret & Jack
Wednesday, October 21, 2009
Monday, October 12, 2009
The Day Has Come
To All:
Well here we sit at the SCCA/Hutch getting Ret reintroduced to her stem cells! They call it her new birthday, unfortunately the gestation period was longer than nine months but we'll take it anyway. The procedure is an all day gig but the actual stem cell infusion takes only about a half an hour. That's partly due to the little "Over Achiever" kicking out so many cells during capture but also there's med's, hydration and general stuff they have to monitor so that adds to the day. After that we head home hunker down and wait for hopefully the re-graftment process to take hold. I say head home and hunker down but really we have to be here everyday for them to monitor Ret's process, so we continue our daily trips to the SCCA.
Some may be asking or saying home, yea home, they are letting us manage this whole thing from home. Actually they say it's better for the patient if you can manage from home and given the fact we're so close that's what we're doing. I really believe it's because Brandstrom, Miller and the Krekows made a large contribution to the SCCA/Hutch so they let us go home instead of us staying with any of them! Oh well their original offer seemed nice anyway.
Gotta go the stem cells just showed up for the Birthday party!!
Love,
Ret & Jack
Well here we sit at the SCCA/Hutch getting Ret reintroduced to her stem cells! They call it her new birthday, unfortunately the gestation period was longer than nine months but we'll take it anyway. The procedure is an all day gig but the actual stem cell infusion takes only about a half an hour. That's partly due to the little "Over Achiever" kicking out so many cells during capture but also there's med's, hydration and general stuff they have to monitor so that adds to the day. After that we head home hunker down and wait for hopefully the re-graftment process to take hold. I say head home and hunker down but really we have to be here everyday for them to monitor Ret's process, so we continue our daily trips to the SCCA.
Some may be asking or saying home, yea home, they are letting us manage this whole thing from home. Actually they say it's better for the patient if you can manage from home and given the fact we're so close that's what we're doing. I really believe it's because Brandstrom, Miller and the Krekows made a large contribution to the SCCA/Hutch so they let us go home instead of us staying with any of them! Oh well their original offer seemed nice anyway.
Gotta go the stem cells just showed up for the Birthday party!!
Love,
Ret & Jack
Thursday, October 1, 2009
Getting Close
To All:
Been a while since my last post and the reason is...........................well I just have to blame Ret! As you know by our recent posts that she's doing so well there's nothing to blog about, which isn't a bad thing now is it?
After her stellar performance during the stem cell capture procedure they said, meaning the SCAA/Hutch, that they didn't want to see us for a week. It was hard but I convinced her to load the truck and head east for the week to spend a little time R&R'ing at the river. There was some R&R but also quite a bit of work getting everything ready for the winter, given the fact that this year we won't be there for at least 3-4 months during her recovery.
With that a little news on the transplant front. We should be headed down to the Hutch the week of 10/12 for her final chemo treatment then 48hrs following that they'll reintroduce her stem cells and hopefully she's on the mend. The time following the reintroduction is the most critical and it's possible that she may be admitted to the hospital for varied reasons, which is quite normal following a transplant. That said some of the larger issues are infections, illnesses, inability to take in food or fluids so they monitor that quite closely, hence the hospital stay. I just told her keep performing as she has and there won't be any problems.....easy for me to say!
All for now.
Love,
Ret & Jack
Been a while since my last post and the reason is...........................well I just have to blame Ret! As you know by our recent posts that she's doing so well there's nothing to blog about, which isn't a bad thing now is it?
After her stellar performance during the stem cell capture procedure they said, meaning the SCAA/Hutch, that they didn't want to see us for a week. It was hard but I convinced her to load the truck and head east for the week to spend a little time R&R'ing at the river. There was some R&R but also quite a bit of work getting everything ready for the winter, given the fact that this year we won't be there for at least 3-4 months during her recovery.
With that a little news on the transplant front. We should be headed down to the Hutch the week of 10/12 for her final chemo treatment then 48hrs following that they'll reintroduce her stem cells and hopefully she's on the mend. The time following the reintroduction is the most critical and it's possible that she may be admitted to the hospital for varied reasons, which is quite normal following a transplant. That said some of the larger issues are infections, illnesses, inability to take in food or fluids so they monitor that quite closely, hence the hospital stay. I just told her keep performing as she has and there won't be any problems.....easy for me to say!
All for now.
Love,
Ret & Jack
Thursday, September 17, 2009
The Over Acheiver
To All:
As I said Tuesday Ret's been labeled the Over Achiever because of some of the things she's been able to do during this process. Well we found out, as with many things, there are goods and bads and being an over achiever has it goods and bads as well. I'll try to explain.
Think of your bones as a pipe and the marrow as the opening or the flow of that pipe. As with any pipe it can only handle much volume and it seems the Lil Over Achiever was trying to push too much through the pipe resulting in extreme pain. That pain is a result of the pressure on the pipe in fact so much that her pain was, as they say 10 on a scale of 10, she said it felt like having a baby. Well they had to put her on a morphine drip to control the pain before we could get her home. After that we had to give her Hydromorphone every three hours over the evening and through the night. Well we made it and shes doing just fine.
The upside of being an over achiever I think is what happened next.
As you know for Ret's transplant she is using her own stems cells...........duh Jack that's what you been saying all along.... sorry. Anyway for this process they try to capture 10 million cells, 5 million used for her original transplant and the other 5 million they put in a U-Store it for a possible future transplant if needed. The process, called Apheresis, usually takes anywhere from 2 to 4 days where you're hooked up to the Apheresis machine and somehow it separates your stem cells from platelets, plasma and whatever else, not much unlike dialysis. Well the Lil Over Achiever, remember the info above, decided she would do it in one day, not that she really had any control and kick off a meager 40.8 million cells!!!!!! We had two calls from the SCCA/Hutch this morning one from the Apheresis team and one from her nurse just flabbergasted! As you can imagine today was a great day, the biggest smiles I've seen on her in a long time. Also we went to the Hutch this morning had a blood draw then out the door we went. What a relief that was no all day stays doing this test that procedure or what ever and that made us both smile. Not that I didn't have a huge smile knowing she knocked the ball out of the park on her stem cell capture.
Well that's all for now.
Love,
Ret & Jack
As I said Tuesday Ret's been labeled the Over Achiever because of some of the things she's been able to do during this process. Well we found out, as with many things, there are goods and bads and being an over achiever has it goods and bads as well. I'll try to explain.
Think of your bones as a pipe and the marrow as the opening or the flow of that pipe. As with any pipe it can only handle much volume and it seems the Lil Over Achiever was trying to push too much through the pipe resulting in extreme pain. That pain is a result of the pressure on the pipe in fact so much that her pain was, as they say 10 on a scale of 10, she said it felt like having a baby. Well they had to put her on a morphine drip to control the pain before we could get her home. After that we had to give her Hydromorphone every three hours over the evening and through the night. Well we made it and shes doing just fine.
The upside of being an over achiever I think is what happened next.
As you know for Ret's transplant she is using her own stems cells...........duh Jack that's what you been saying all along.... sorry. Anyway for this process they try to capture 10 million cells, 5 million used for her original transplant and the other 5 million they put in a U-Store it for a possible future transplant if needed. The process, called Apheresis, usually takes anywhere from 2 to 4 days where you're hooked up to the Apheresis machine and somehow it separates your stem cells from platelets, plasma and whatever else, not much unlike dialysis. Well the Lil Over Achiever, remember the info above, decided she would do it in one day, not that she really had any control and kick off a meager 40.8 million cells!!!!!! We had two calls from the SCCA/Hutch this morning one from the Apheresis team and one from her nurse just flabbergasted! As you can imagine today was a great day, the biggest smiles I've seen on her in a long time. Also we went to the Hutch this morning had a blood draw then out the door we went. What a relief that was no all day stays doing this test that procedure or what ever and that made us both smile. Not that I didn't have a huge smile knowing she knocked the ball out of the park on her stem cell capture.
Well that's all for now.
Love,
Ret & Jack
Tuesday, September 15, 2009
Fast and Furious
Well-
As I said last time, we're now on the treadmill, wow what a treadmill. We've spent everyday since the 10th at the Hutch, tests, shots, blood draws, more tests, shots, transfusions..............
But it's been worth it Ret's on a fast track to having her stem cells harvested, which may happen tomorrow in fact we have it on our itinerary to do just that.
The team assigned to her are just great her nurse Rick, can you imagine Ret's face when RICK came in the room, is just a super guy. Twenty-six years of taking care of cancer patients and just a kick in the butt, which makes us both happy. Anyway today he came down to the 5th floor where she was having her transfusion and asked her if she always has been an over achiever, of course she said yes. The reason for his question was because in just one day she went from barely having enough certain blood counts to being able to start harvesting as I said above tomorrow. And with that they may be able to harvest enough in one procedure which would be just super.
Myself, Kim Christinsen and Kathy, Rets sister, have gone through a number of classes from Patient Home Care to Food Prep to Catheter Care/Maintenance as well as others. While I know some of you have experienced this sort of thing I can't tell how detailed they are as well as so many things you wouldn't think of regarding this type of care...........it's mind boggling. How about no fresh cut flowers, thanks to those who have sent them, now you can stop it might save you buck or two. How about no potted plants, because they can have mold, BAD STUFF, Chuck Bigford gets them because he's such a sissy. How about no deli meat/cheese or maybe a fresh salad at your favorite lunch spot or restaurant BAD, can't control the preparation so you can't have it. Well that's enough of that but it's just crazy what you have to be prepared for, but it all makes sense.
NO IMMUNE SYSTEM!
Again I'll try to post as often as I can with new information but for now I'm off to clean the house with bleach!!
Love,
Ret & Jack
As I said last time, we're now on the treadmill, wow what a treadmill. We've spent everyday since the 10th at the Hutch, tests, shots, blood draws, more tests, shots, transfusions..............
But it's been worth it Ret's on a fast track to having her stem cells harvested, which may happen tomorrow in fact we have it on our itinerary to do just that.
The team assigned to her are just great her nurse Rick, can you imagine Ret's face when RICK came in the room, is just a super guy. Twenty-six years of taking care of cancer patients and just a kick in the butt, which makes us both happy. Anyway today he came down to the 5th floor where she was having her transfusion and asked her if she always has been an over achiever, of course she said yes. The reason for his question was because in just one day she went from barely having enough certain blood counts to being able to start harvesting as I said above tomorrow. And with that they may be able to harvest enough in one procedure which would be just super.
Myself, Kim Christinsen and Kathy, Rets sister, have gone through a number of classes from Patient Home Care to Food Prep to Catheter Care/Maintenance as well as others. While I know some of you have experienced this sort of thing I can't tell how detailed they are as well as so many things you wouldn't think of regarding this type of care...........it's mind boggling. How about no fresh cut flowers, thanks to those who have sent them, now you can stop it might save you buck or two. How about no potted plants, because they can have mold, BAD STUFF, Chuck Bigford gets them because he's such a sissy. How about no deli meat/cheese or maybe a fresh salad at your favorite lunch spot or restaurant BAD, can't control the preparation so you can't have it. Well that's enough of that but it's just crazy what you have to be prepared for, but it all makes sense.
NO IMMUNE SYSTEM!
Again I'll try to post as often as I can with new information but for now I'm off to clean the house with bleach!!
Love,
Ret & Jack
Friday, September 11, 2009
We're On The Treadmill
To All-
Well here we go! I must admit, while I knew that we were basically going to be living at the SCCA/Hutch as we moved forward on this journey, I/we didn't expect it to start yesterday. Well it did and we are now on that treadmill. From now on, for whatever now on means, we will be visiting the SCCA everyday for blood work and GCSF shots as well as a number of other procedures which I won't bore you with. Depending on the results of those procedures we may need to revisit the facility, that day, for a number of different reasons........more shots, transfusions, nutritional support or a number of other reasons. As they mentioned to us they now have control of Ret's life and believe me based on the schedule we have they do, every move is planned each and every day.
Again not knowing we were going to be immersed so soon we now have to jump start our efforts and support team to make sure we keep up with such an intense schedule, which we will do.
All for now, but I'll try and continue to post more frequently because there should be enough news worthy info to report. Meaning I won't bore you with the 88 different categories based solely on the blood tests alone but there should be enough other meaningful information.
Based on this blog you probably can tell that at least tonight I'm brain dead!
Love
Ret & Jack
Well here we go! I must admit, while I knew that we were basically going to be living at the SCCA/Hutch as we moved forward on this journey, I/we didn't expect it to start yesterday. Well it did and we are now on that treadmill. From now on, for whatever now on means, we will be visiting the SCCA everyday for blood work and GCSF shots as well as a number of other procedures which I won't bore you with. Depending on the results of those procedures we may need to revisit the facility, that day, for a number of different reasons........more shots, transfusions, nutritional support or a number of other reasons. As they mentioned to us they now have control of Ret's life and believe me based on the schedule we have they do, every move is planned each and every day.
Again not knowing we were going to be immersed so soon we now have to jump start our efforts and support team to make sure we keep up with such an intense schedule, which we will do.
All for now, but I'll try and continue to post more frequently because there should be enough news worthy info to report. Meaning I won't bore you with the 88 different categories based solely on the blood tests alone but there should be enough other meaningful information.
Based on this blog you probably can tell that at least tonight I'm brain dead!
Love
Ret & Jack
Sunday, September 6, 2009
First Round Over
To Everyone-
Well our first round of Chemo is over and what a relief!
As I said before Ret had 3 straight days of Chemo, the first day as they told us, 8 times the normal dosage or regular treatments and the last two days normal doses. Her doc and the rest of the team were blown away by how calm she was and how she handled it. That said however it wasn't without sickness, pain or emotional challenges, but again she handled it well. Easy for me to say huh!!??
We're two days into our 5 day GCSF shot regiment, which is meant to boost her white blood cell and stem cell counts. Then we're on our way to SCCA and the Hutch for new tests and to ready her for the stem cell harvest. That will be another challenge as well, but she's up to it, emotions are high but again she'll push through.
Thanks to all for the flowers and continued cards it really helps boost her spirits to know that so many of you are out there thinking about her.
Love
Ret & Jack
Well our first round of Chemo is over and what a relief!
As I said before Ret had 3 straight days of Chemo, the first day as they told us, 8 times the normal dosage or regular treatments and the last two days normal doses. Her doc and the rest of the team were blown away by how calm she was and how she handled it. That said however it wasn't without sickness, pain or emotional challenges, but again she handled it well. Easy for me to say huh!!??
We're two days into our 5 day GCSF shot regiment, which is meant to boost her white blood cell and stem cell counts. Then we're on our way to SCCA and the Hutch for new tests and to ready her for the stem cell harvest. That will be another challenge as well, but she's up to it, emotions are high but again she'll push through.
Thanks to all for the flowers and continued cards it really helps boost her spirits to know that so many of you are out there thinking about her.
Love
Ret & Jack
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