Okay, Okay I know I'm late again but give me a break will ya!
Well we had our Oncology visit today and as we had hoped no real difficult news to report which is good. As mentioned in the past, the M-Protein level which dictates when Ret goes in for her transplant has not necessarily bottomed out, which is what you look for, however the percent of decline has somewhat stabilized. That said we may go in for the transplant sooner than the September time frame I mentioned last time. As most of you know these things are like being on a roller coaster we're just along for the ride..........can't wait to get off though!
As I've done in the past and will continue to do as we move along, is talk about all the things that you've done for Ret and I during this difficult time. I wanted to bring to your attention a special person as well as a special family that has endured many more hardships than any of us would want.
The Ellis family of Snohomish have been great friends of ours for a very long time. Steve, Cindy, Ret and I taught skiing at Stevens Pass for years. While Steve and I played softball together, trying to act young, Cindy and Ret raised our kids together at many ballparks around the state. Well Cindy has taken on a great personal challenge and that is to help raise money for cancer research. She has taken on this effort in memory of her son Brett, who passed due to cancer, and in hopes of helping others such as Lauretta fight this dreaded disease. Cindy herself has battled back from a life threatening brain aneurysm which makes her story even that much more remarkable. As all of you know I certainly can't do Cindy's cause justice by my babbling and wouldn't try. So if you could please paste the web address below onto your browser to read her story, hopefully understand her cause and donate if you can.
Ret and I can't thank her enough for wanting to be part of our journey in such a special way!
http://pages.teamintraining.org/wa/nikesf09/cellis0le3
Love,
Ret & Jack
Tuesday, June 9, 2009
Tuesday, May 19, 2009
Late Again
Sorry All-
I know it's been a while again since my last post but as I've said before no news in this case is good news!!
We did meet with Ret's oncologist on 5/12 and again happy to report no real new developments. It was discovered however that the transplant probably will happen more around September than July as we originally thought. That development came about based on the doctors patient history dealing with this condition, not any real issues. So in most cases it seems that the person needs to be on the drug therapy longer than the prescribed 4 months. There certainly pro's and con's to that but safe to say "it is what it is" and we'll deal with that.
Oh, the reason why I'm late again Bob, Sharon and Pat is that we're back in Philly. We came back for a wedding and are staying to catch up with some great friends. Actually for those of you who have one of the "Expect Miracles" bracelets that Ret has, the friends we're staying with Mark and Mary are where those came from. Anyway we'll be home for the M-Day weekend at the river.
Thanks again to all.
Love,
Ret and Jack
I know it's been a while again since my last post but as I've said before no news in this case is good news!!
We did meet with Ret's oncologist on 5/12 and again happy to report no real new developments. It was discovered however that the transplant probably will happen more around September than July as we originally thought. That development came about based on the doctors patient history dealing with this condition, not any real issues. So in most cases it seems that the person needs to be on the drug therapy longer than the prescribed 4 months. There certainly pro's and con's to that but safe to say "it is what it is" and we'll deal with that.
Oh, the reason why I'm late again Bob, Sharon and Pat is that we're back in Philly. We came back for a wedding and are staying to catch up with some great friends. Actually for those of you who have one of the "Expect Miracles" bracelets that Ret has, the friends we're staying with Mark and Mary are where those came from. Anyway we'll be home for the M-Day weekend at the river.
Thanks again to all.
Love,
Ret and Jack
Monday, May 4, 2009
Trying to Keep Up
Sorry again I know it's been two weeks since my last post, but in many ways that's a good thing.
I will tell you when we get close to the transplant part of our journey I'll be posting much more often, it will be a very critical time as well as a time with the most information that I'm sure all of you will concerned about.
As I mentioned last time, we were working on and the doc did reduce the dosage of the pain med's that Ret is on, again because the side effects were such that it was difficult for her to manage her day as close to normal as she wanted. While we were correct in assuming that the side effects may change for the better, we were unprepared for the return of the constant pain. That said Ret has decided that the day to day side effects are easier to live with than the constant pain, so we're back on the heavy duty stuff. With that, I'm starting my own garage pharmacy over here with the surplus med's we have on hand to help with the finances! Kidding, kidding I'm just kidding, that's just what we need me in jail and Ret in the hospital. Alright I know what some of you are thinking, that's where I should be or maybe should have been anyway...........too bad I'm on the loose.
Funny story. As in my last post I mentioned this is the only way a significant number of you keep up with Rets condition and for you others just to hang in there through my rants. So here's the story. I post on Tuesday then head to Stanwood on Wednesday to take my step mom to the doc for her new ankle brace. I'm at TT for lunch, that's Taco Time for you non-aficionados, and run into Sharon Hanson a close high school friend of ours. First she asks what I'm doing there, feel like I'm banned from my own home town, I tell her then she asks how Ret is doing because shes gone to the blog and I haven't posted in while, I tell her I just posted the night before and not to worry Ret's just fine. Then I get home tell Ret the story and she tells me Bob Burns had sent her a message that day on her facebook page asking how she's doing because I hadn't posted lately and he wanted to know. Bob, Sharon sorry I'll try and do a better job.
It just goes to show you people pay more attention than you think....................................and for that Ret and I are truly grateful!!!
Love,
Ret & Jack
I will tell you when we get close to the transplant part of our journey I'll be posting much more often, it will be a very critical time as well as a time with the most information that I'm sure all of you will concerned about.
As I mentioned last time, we were working on and the doc did reduce the dosage of the pain med's that Ret is on, again because the side effects were such that it was difficult for her to manage her day as close to normal as she wanted. While we were correct in assuming that the side effects may change for the better, we were unprepared for the return of the constant pain. That said Ret has decided that the day to day side effects are easier to live with than the constant pain, so we're back on the heavy duty stuff. With that, I'm starting my own garage pharmacy over here with the surplus med's we have on hand to help with the finances! Kidding, kidding I'm just kidding, that's just what we need me in jail and Ret in the hospital. Alright I know what some of you are thinking, that's where I should be or maybe should have been anyway...........too bad I'm on the loose.
Funny story. As in my last post I mentioned this is the only way a significant number of you keep up with Rets condition and for you others just to hang in there through my rants. So here's the story. I post on Tuesday then head to Stanwood on Wednesday to take my step mom to the doc for her new ankle brace. I'm at TT for lunch, that's Taco Time for you non-aficionados, and run into Sharon Hanson a close high school friend of ours. First she asks what I'm doing there, feel like I'm banned from my own home town, I tell her then she asks how Ret is doing because shes gone to the blog and I haven't posted in while, I tell her I just posted the night before and not to worry Ret's just fine. Then I get home tell Ret the story and she tells me Bob Burns had sent her a message that day on her facebook page asking how she's doing because I hadn't posted lately and he wanted to know. Bob, Sharon sorry I'll try and do a better job.
It just goes to show you people pay more attention than you think....................................and for that Ret and I are truly grateful!!!
Love,
Ret & Jack
Tuesday, April 21, 2009
We Continue
Well it's been more than 2 weeks since my last post and for some of you I know it's a blessing, my rants and all. But for some of you it truly is the only way you keep track of Ret's progress, so for that first group hang in there.
We did meet Friday 4/10, with Ret's local oncologist in Edmonds and things seem to be moving along fine. We're working on changing the dosages of some of the med's to hopefully reduce the "morning sickness" feeling, which on some days is all day, the doc is great and certainly willing to do what's best as long as the desired results for the cancer aren't jeopardized so that's good. We're still somewhat on plan for the transplant in early summer, the one change might be this however. The measure of the meds effectiveness is if Ret's M-Protein, "The Bad Guy's" drops in count and the goal is to get that count as low as possible before the transplant, so if that count continues to drop then they will continue the drug therapy longer resulting in a later start for the transplant. A little explanation on the M-Protein. Just think of the bone marrow as a pipe only so big, meaning it can carry only so much. So what's happening is the M-Protein, "Bad Guy" is mutating at a much greater rate than normal thus crowding out all the "Good Guys" so they can't do their work. Again they want to get that count as low as possible before the transplant. Possibly moving the timeline a little later into the summer than we originally thought, but again that's if in fact the count continues to drop if it levels off we'll go as planned.
A couple of cool things. The cards and letters just keep on coming, she hands me each one and says "oh you need to read this one", I know I've said this before but it really does brighten Ret's day. Oh yea girls weekend, the gang from high school, happened at the river this last weekend I know they had fun, I could tell by all the hooting and hollering in the background when I called, but it was holy hell on me! It was the first time we had been apart since this whole thing started. So instead of camping out across the river on the island with my binoculars, spotlight and being a real pest, I stayed up river at Norm and Carol Formo's and just called, not too far away just in case Ret needed me. Somehow the girls pulled it off!
Again thanks for all your heartfelt wishes.
Love,
Ret & Jack
We did meet Friday 4/10, with Ret's local oncologist in Edmonds and things seem to be moving along fine. We're working on changing the dosages of some of the med's to hopefully reduce the "morning sickness" feeling, which on some days is all day, the doc is great and certainly willing to do what's best as long as the desired results for the cancer aren't jeopardized so that's good. We're still somewhat on plan for the transplant in early summer, the one change might be this however. The measure of the meds effectiveness is if Ret's M-Protein, "The Bad Guy's" drops in count and the goal is to get that count as low as possible before the transplant, so if that count continues to drop then they will continue the drug therapy longer resulting in a later start for the transplant. A little explanation on the M-Protein. Just think of the bone marrow as a pipe only so big, meaning it can carry only so much. So what's happening is the M-Protein, "Bad Guy" is mutating at a much greater rate than normal thus crowding out all the "Good Guys" so they can't do their work. Again they want to get that count as low as possible before the transplant. Possibly moving the timeline a little later into the summer than we originally thought, but again that's if in fact the count continues to drop if it levels off we'll go as planned.
A couple of cool things. The cards and letters just keep on coming, she hands me each one and says "oh you need to read this one", I know I've said this before but it really does brighten Ret's day. Oh yea girls weekend, the gang from high school, happened at the river this last weekend I know they had fun, I could tell by all the hooting and hollering in the background when I called, but it was holy hell on me! It was the first time we had been apart since this whole thing started. So instead of camping out across the river on the island with my binoculars, spotlight and being a real pest, I stayed up river at Norm and Carol Formo's and just called, not too far away just in case Ret needed me. Somehow the girls pulled it off!
Again thanks for all your heartfelt wishes.
Love,
Ret & Jack
Tuesday, April 7, 2009
One Week Post-Hutch Visit
Well this will be a short one.........and that's a good thing. A little over a week since our visit to the Hutch and things are about the same. One thing though there seems to be a little more "morning sickness" than normal that hangs around or better said just pops up during the day. Not sure if that's the additional meds or just a phase I guess that will be one more question for the doc's. Ret hasn't slowed down too much a couple days a week at work, still planing girls weekend over at Entiat plus trying to cram in enough summer before we actually have to stay in Seattle for that 6-7 month period when we need to be close to the Hutch. So I guess that means trips over Stevens Pass every weekend until they make us stay home, not like we wouldn't do it anyway. Just trying to stay as normal as possible.
As I mentioned last week, man the cards and letters keep coming which is a great thing they certainly bring a huge smile to Ret's face. Just one little fun thing and I'll give my fingers and your minds a rest. Mike Leys, TJ's best man from Philly wife Jess and little guy Toby sent a little homemade photo album which was really cool. As you can imagine a ton of pic's mostly of "The Tobster" at the beach reeling in the babes, cruising on mom and dads boat in Chesapeake Bay, carving some major arch's on the mountain and just being a normally cool 3 year old. Mike has always called Ret mom, right from the time he and TJ met at school back in Philly, so to have her second son and his family send treasured moments to her is really special.
Love,
Ret and Jack
As I mentioned last week, man the cards and letters keep coming which is a great thing they certainly bring a huge smile to Ret's face. Just one little fun thing and I'll give my fingers and your minds a rest. Mike Leys, TJ's best man from Philly wife Jess and little guy Toby sent a little homemade photo album which was really cool. As you can imagine a ton of pic's mostly of "The Tobster" at the beach reeling in the babes, cruising on mom and dads boat in Chesapeake Bay, carving some major arch's on the mountain and just being a normally cool 3 year old. Mike has always called Ret mom, right from the time he and TJ met at school back in Philly, so to have her second son and his family send treasured moments to her is really special.
Love,
Ret and Jack
Monday, March 30, 2009
Fred Hutch and Seattle Cancer Care Alliance Visit
To All-
Wow Wow Wow!! Those three words encompass many things about our first visit to the Fred Hutch and SCCA. I'm really not sure where to start but safe to say the entire visit was very informative, well orchestrated, refreshing in a odd way but most importantly extremely encouraging! As with a great deal of this journey it's impossible for me to effectively communicate the entire process or what's happening within that process, there's just too much, but I will say today was a great day! Not that we hadn't had good news before however today we were able to put certain cares and concerns aside and truly look at the process and really the time line. We found out today that we can expect to begin the transplant process either late June or early July. Ret's mad because it's getting in the way of her summer and much worse her golf. While the actual transplant itself will be the easy part, if there's really anything easy in any of this, the "Conditioning " process is the most difficult in almost all cases. That is where, for all of us "lay" people, the Chemotherapy takes place. It is an intense 4 day medicine therapy, "chemo", that will eradicate most if not all of the cancer cells. That's not to say you are cancer free, just that Ret is in remission and they can then capture Ret's blood which carry the stem cells for them to reintroduce to her after she has gone through a 2 to 3 week recoup period. They actually capture and store enough stem cells to preform two transplants if necessary. After that has taken place we need to live within 15-20 minutes of the "Hutch" just in case any complications arise. It truly is a critical time as Ret will be extremely vulnerable to any type of illnesses from the common cold, flu, measles, chicken pox or whatever. But again we need to be close just in case anything comes up. That is because her immune system is basically gone. That period will last at least 3 months but could be as long as 6 months. As mentioned before in my previous posts all these things are dependent how Ret reacts to all these different procedures.
As I write this, I can see how to some of you this may not sound encouraging however given some of the options that are or were available believe me it really is.
Now I know that this is what you are really waiting for and that is my rants!!! Look I spared most of you this week because I placed this at the bottom just so those of you who want to can skip it. But really this is about each of you.
As you know I've mentioned things in previous posts that a lot of you have done for Ret and I along this crazy road we're traveling, again as you also know I'm not doing this for any other reason than to simply thank each and everyone of you. So here I go. I'm not sure but with the economic uncertainly in the world today that there aren't many places where you might place your money but one thing I will tell you is that whether it's Hallmark or any other card company dump it there. That's because some of you are spending a crazy amount on cards, whether it's monthly or weekly, and yes some of you are sending one weekly, Ret is getting a tremendous amount of cards. To each of you we can only say thank you.
I think I mentioned last week about things that Ret wants to take with her during the transplant process one being the prayer shawl she received, another being one of those new computer chip picture frames that rotates pic's off the chip which I'll pick up here soon, but another is a very special letter. Sorry I'm getting long winded here. We have a very close high school friend of ours who Ret has forged a very special relationship with over the years who sent her a letter. While the relationship is special, what is really special is not so much the letter it self but it's delivery. What makes it special is you need to know Bob is a feature writer for Associated Press and has been for thirty years, actually working at the Pentagon and he bangs out stories at a fevered pace as you can imagine. Just google Robert Burns AP and you'll see. So with that pace and volume of text he creates on a daily basis it would be too easy to just bang out a little more in an email or typed correspondence, knowing full well it certainly would be heartfelt, but still an easy way to communicate. But no, he left the keyboard and using his words he "was drawn to the pen" yes the old hand written letter. To some that may not seem to be that special but given how fast we live our lives the thought and the time Bob spent to be more personable was fantastic. As you can imagine the words and the message were caring and special but it just struck me that the medium just as special. That too is a treasured memento that will accompany Ret on her visit and stay at the Hutch.
Again you all hold a special place with us.
Lauretta and Jack
Wow Wow Wow!! Those three words encompass many things about our first visit to the Fred Hutch and SCCA. I'm really not sure where to start but safe to say the entire visit was very informative, well orchestrated, refreshing in a odd way but most importantly extremely encouraging! As with a great deal of this journey it's impossible for me to effectively communicate the entire process or what's happening within that process, there's just too much, but I will say today was a great day! Not that we hadn't had good news before however today we were able to put certain cares and concerns aside and truly look at the process and really the time line. We found out today that we can expect to begin the transplant process either late June or early July. Ret's mad because it's getting in the way of her summer and much worse her golf. While the actual transplant itself will be the easy part, if there's really anything easy in any of this, the "Conditioning " process is the most difficult in almost all cases. That is where, for all of us "lay" people, the Chemotherapy takes place. It is an intense 4 day medicine therapy, "chemo", that will eradicate most if not all of the cancer cells. That's not to say you are cancer free, just that Ret is in remission and they can then capture Ret's blood which carry the stem cells for them to reintroduce to her after she has gone through a 2 to 3 week recoup period. They actually capture and store enough stem cells to preform two transplants if necessary. After that has taken place we need to live within 15-20 minutes of the "Hutch" just in case any complications arise. It truly is a critical time as Ret will be extremely vulnerable to any type of illnesses from the common cold, flu, measles, chicken pox or whatever. But again we need to be close just in case anything comes up. That is because her immune system is basically gone. That period will last at least 3 months but could be as long as 6 months. As mentioned before in my previous posts all these things are dependent how Ret reacts to all these different procedures.
As I write this, I can see how to some of you this may not sound encouraging however given some of the options that are or were available believe me it really is.
Now I know that this is what you are really waiting for and that is my rants!!! Look I spared most of you this week because I placed this at the bottom just so those of you who want to can skip it. But really this is about each of you.
As you know I've mentioned things in previous posts that a lot of you have done for Ret and I along this crazy road we're traveling, again as you also know I'm not doing this for any other reason than to simply thank each and everyone of you. So here I go. I'm not sure but with the economic uncertainly in the world today that there aren't many places where you might place your money but one thing I will tell you is that whether it's Hallmark or any other card company dump it there. That's because some of you are spending a crazy amount on cards, whether it's monthly or weekly, and yes some of you are sending one weekly, Ret is getting a tremendous amount of cards. To each of you we can only say thank you.
I think I mentioned last week about things that Ret wants to take with her during the transplant process one being the prayer shawl she received, another being one of those new computer chip picture frames that rotates pic's off the chip which I'll pick up here soon, but another is a very special letter. Sorry I'm getting long winded here. We have a very close high school friend of ours who Ret has forged a very special relationship with over the years who sent her a letter. While the relationship is special, what is really special is not so much the letter it self but it's delivery. What makes it special is you need to know Bob is a feature writer for Associated Press and has been for thirty years, actually working at the Pentagon and he bangs out stories at a fevered pace as you can imagine. Just google Robert Burns AP and you'll see. So with that pace and volume of text he creates on a daily basis it would be too easy to just bang out a little more in an email or typed correspondence, knowing full well it certainly would be heartfelt, but still an easy way to communicate. But no, he left the keyboard and using his words he "was drawn to the pen" yes the old hand written letter. To some that may not seem to be that special but given how fast we live our lives the thought and the time Bob spent to be more personable was fantastic. As you can imagine the words and the message were caring and special but it just struck me that the medium just as special. That too is a treasured memento that will accompany Ret on her visit and stay at the Hutch.
Again you all hold a special place with us.
Lauretta and Jack
Friday, March 20, 2009
First Dr. Visit Post Medication
Everyone-
I'm posting a little late this week, we wanted to get the doctor visit out of the way in hopes of providing you all with some detailed info regarding Ret's progress, but more on that later.
Here I go again! As with my last posts I've mentioned some of the great things that you've done for us that truly give us hope but more importantly let's us know how blessed we are to have each of you as family and friends. Well again this is one I should have mentioned right from the get-go. I've had a number of comments regarding what a great idea it was to create this blog enabling all of you to keep track of Ret's progress. Well guess what.............it really wasn't me! I know, I know you're shocked, me too I usually come up with all the great ideas. But really it was Kim Christianson and her daughter Andrea, they had the idea, created the layout then passed it on to me. How easy was that huh? What I really should do is put them in the witness protection program because giving me another avenue to blab, JUST AIN'T RIGHT, and may put their lives in danger!! Let me give you a little hint just skip the first paragraph or two go right to where I talk about Ret and you'll be spared. Another cool thing is we received a Prayer Shawl from Jim and Sue Gronhovd, TJ's in-laws, that a lady in their church the Pilgrim Lutheran Church in Puyallup made, it is truly a beautiful piece of work and craftsmanship. It also came with two wonderful prayers one which was said during the entire time she worked on the shawl....incredible. There are certain things that Ret wants to take with her while she stays at the Fred Hutch for the transplant and treatment and I've been told this shawl is definitely one of them. I know I've said this before and I know I will say it again you people are amazing!
Our first post medical treatment doctor appointment was today, unfortunately we didn't get the blood labs back so while we didn't get any real factual information, outside of the normal, the doctor was happy with Ret's progress to date. We discussed the side effects Ret has been experiencing along with other tidbits and again the doctor said all seemed to be normal. One troubling bit of info was that because Ret's form of this particular cancer is a very aggressive, was that she was to be on two drugs to manage the disease not just the Thalidomide, the other being Dexamethasone, well she wasn't. While this is not particularly large problem it's certainly not what we wanted to hear. Lesson here ask ask ask! The weird thing was in all the literature we read the Dexa drug was mentioned but we also knew and discussed with the doc that in many cases the Thalidomide was the appropriate drug therapy. Again not a huge problem but hey you want it right from the start, well we're now on the right path so things are looking up. As I mentioned before our first visit to the Fred Hutch will be on March 30th, while we approach that visit with a certain sense of trepidation, which may sound weird to some of you, it will set us on a course to recovery.
I can only say, words large or small, cleverly crafted or just written in plain language, can't express how we feel about each of you.
Love,
Ret and Jack
I'm posting a little late this week, we wanted to get the doctor visit out of the way in hopes of providing you all with some detailed info regarding Ret's progress, but more on that later.
Here I go again! As with my last posts I've mentioned some of the great things that you've done for us that truly give us hope but more importantly let's us know how blessed we are to have each of you as family and friends. Well again this is one I should have mentioned right from the get-go. I've had a number of comments regarding what a great idea it was to create this blog enabling all of you to keep track of Ret's progress. Well guess what.............it really wasn't me! I know, I know you're shocked, me too I usually come up with all the great ideas. But really it was Kim Christianson and her daughter Andrea, they had the idea, created the layout then passed it on to me. How easy was that huh? What I really should do is put them in the witness protection program because giving me another avenue to blab, JUST AIN'T RIGHT, and may put their lives in danger!! Let me give you a little hint just skip the first paragraph or two go right to where I talk about Ret and you'll be spared. Another cool thing is we received a Prayer Shawl from Jim and Sue Gronhovd, TJ's in-laws, that a lady in their church the Pilgrim Lutheran Church in Puyallup made, it is truly a beautiful piece of work and craftsmanship. It also came with two wonderful prayers one which was said during the entire time she worked on the shawl....incredible. There are certain things that Ret wants to take with her while she stays at the Fred Hutch for the transplant and treatment and I've been told this shawl is definitely one of them. I know I've said this before and I know I will say it again you people are amazing!
Our first post medical treatment doctor appointment was today, unfortunately we didn't get the blood labs back so while we didn't get any real factual information, outside of the normal, the doctor was happy with Ret's progress to date. We discussed the side effects Ret has been experiencing along with other tidbits and again the doctor said all seemed to be normal. One troubling bit of info was that because Ret's form of this particular cancer is a very aggressive, was that she was to be on two drugs to manage the disease not just the Thalidomide, the other being Dexamethasone, well she wasn't. While this is not particularly large problem it's certainly not what we wanted to hear. Lesson here ask ask ask! The weird thing was in all the literature we read the Dexa drug was mentioned but we also knew and discussed with the doc that in many cases the Thalidomide was the appropriate drug therapy. Again not a huge problem but hey you want it right from the start, well we're now on the right path so things are looking up. As I mentioned before our first visit to the Fred Hutch will be on March 30th, while we approach that visit with a certain sense of trepidation, which may sound weird to some of you, it will set us on a course to recovery.
I can only say, words large or small, cleverly crafted or just written in plain language, can't express how we feel about each of you.
Love,
Ret and Jack
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