Saturday, December 19, 2009

The Final

Happy Holidays!



Well we finally have all the pieces put together for our next forever.......what? As the title of my last post said "Moving On" that's what we are doing. SCCA/Hutch contacted Ret and asked her to be part of the clinical trial and as expected she declined. That's OK, she's feeling great all her numbers have come in perfect so she's going to give it a go as they say "bareback". No support.



We met with her primary yesterday and got a great Christmas present and that is we can now start our monthly check ups instead of weekly. In addition her breast biopsy's came back negative so better yet. So from now on it's blood draws once a month and Zometa treatments for her acute Osteoporosis and that should be it. Obviously the monthly blood draws are to monitor her condition to make sure the cancer doesn't return. We don't at this point have plan to institute a long term drug therapy to control her condition but again we'll monitor that monthly to evaluate and determine our options.



So for all you unlucky folks, that truly cared for Ret, you won't have to put up with my babble any longer. NOW THERE'S A CHRISTMAS PRESENT!



Actually as I have said many times, you really can't imagine how much your love and support helped get Ret through this extremely difficult time. There are way to many of you to single out, but safe to say you all played a very critical role in her success and for that we are truly indebted and blessed. May the holidays bring you and your families great joy and the new year great success!



With great admiration and humility-

Love

Ret & Jack

Sunday, November 29, 2009

Moving On

Happy Holidays to All:



As mentioned in my last post we've been sprung and we're taking advantage of that. We spent the week before T-Day at the river just hanging out doing a little cleaning but that was about it. Amazing how a house can get dirty even though you're not there, of course the yard is a different story that never ceases to create work for us.



We got back Thursday so we could meet with Ret's primary in Edmonds on Friday and you would have thought she was one of their lost children, hugs, kisses and a great deal of emotions as well. It was good to be back! I will tell you however that I was amazed, I don't know why though, that Eileen Ret's doc knew every detail of our three month odyssey at SCCA. It is so refreshing and meaningful how they track your progress and communicate that to all involved.



We really haven't cut ties completely with SCCA/Hutch we have a few more procedures we need to complete that I'll briefly talk about. But in addition they want Ret to go on a clinical study involving two cancer med's that have been used to help keep Ret's type of cancer at bay for the long term. While they believe these two med's have been effective in doing just that they have not been used in concert and that is what they want to measure. It depends on how you look at these things and certainly everyone involved has an opinion but at this point the comment from Ret was she doesn't want to be a Guinea Pig and I'll leave it at that.



As they do, the SCCA manages your complete health care, meaning if there are any normal types of tests one should have just for general health maintenance you get it. Well Ret's mammogram came back with a couple areas of concern, a cyst in one breast and what they say looks like a possible calcium deposit in the other. She'll have biopsy's done this next week and the obvious diagnosis will me made, however they do say in both cases they are not overly concerned.



As always thanks to all for your continued support you really don't know what it means!!



Love,

Ret & Jack

Wednesday, November 4, 2009

We're Free.................Kind of!

To All:

Well we were sprung from our little UW prison on Friday last week and I must say it was none too soon!! While the caregivers were able to walk around, go outside, down to the cafe and other places Ret was pretty much confined to the 8th floor and her room. I know now that we are out it was more of a mental drain on her than physical. They sent us home with a new schedule of going back to SCCA/Hutch. In meeting with them on Monday it looks as if we'll have just a couple more weeks there and not everyday thank goodness, then transfer back up to Edmond's and Ret's primary oncologist.



As I may have mentioned in the past Ret's cancer is not one where if there are no recurrences or signs of cancer say within 5yrs you're considered cured or at least cancer free. Hers is one that never really goes away so we'll work with the SCCA/Hutch and her primary to determine a drug therapy that best suits her and her lifestyle to help manage the cancer. She'll continue to have monthly visits to her doc for the first year then every six months there after, in addition to that she'll have monthly zometa shots to help with the acute osteoporosis that the cancer caused. Also if necessary we have a few million stems cells in the U-Store-It should she need another transplant. The little over achiever!



As always thanks to all for the cards, letters and calls. It's truely hard to explain how much it means to Ret!



Love,

Ret and Jack

Thursday, October 29, 2009

Still Here

To All:


Well we're still here at the UW Med Center, seems as if Ret hasn't been able to get her fluids and nourishment to stay down like they would like. So until she keeps her stuff down we will be here, actually they're trying to spring us this Sat 10/31 just in time for Halloween. If so I have to come up with some sort of costume that will accent that beautifully smooth chrome dome that she covers up with all the cool hats she has, the kids will love it. Anyway we won't push going home too soon though it really is best for her to be here for the time being.


Unfortunately she's also developed a bacteria called C.difficile that we all have and carry with us, but because her immune system can't fight it normally they have to treat it with antibiotics. While it certainly can be dangerous they have a handle on it and aren't overly concerned. They are just as concerned about us passing it along to the other patient population here, so when we're with her we gown up and use latex gloves to prevent the transfer of the bacteria.


Also unfortunately she has pulled a rib muscle because of so much dry heaving and its extremely painful which is no fun what so ever!! Sorry about being graphic but it's all part of the deal.


Take care.


Love,

Ret & Jack

Wednesday, October 21, 2009

Bump in The Road

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

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

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

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

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

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

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

Monday, August 31, 2009

Step One Complete

Well we're on our way, this morning Ret had the catheter inserted into her chest and all I heard was it "hurt like hell". The language for such a little one my oh my!! Could you imagine if it was me I'd still be cussing!!

Anyway tomorrow we visit the doc for a brief checkup, then on to Chemo starting Wednesday for 4 straight days. I'll keep you all posted!

Love,
Ret & Jack

Sunday, August 16, 2009

We Have a Plan

To All-



As I titled our blog last we Here We Go well now we have the actual plan and timeline.


The process begins on August 31st, with a visit to Stevens in Edmonds for the Hickman Catheter to be inserted into Rets chest. A very simple procedure that will last about an hour, but one that is very critical to the complete process as it is through that catheter that she receives all chemo, meds and also where here stems cells are captured then reintroduced to her at a later date for her recovery.

Following that we visit her doc the next day, Sept. 1st, and begin her chemo treatments that will last for 4 days in a row from the 1st through the 4th. All this takes place at Edmonds which Ret is extremely happy about. Following that Ret will enjoy an 8 day rest period, if you can say enjoy, they call it rest but she'll have to visit the clinic 5 of those 8 days to receive a shot called GCSF. This shot causes the bone marrow to produce white blood cells which helps in possibly eliminating serious infections but in addition stimulates stem cell growth which allows them to be captured at a much higher rate, when she goes in for that procedure.

After that on the 10th we head south to the SCCA/Hutch, to begin a series of tests before the actual stem cell capture. That process is a daily 2 to 4 day process and that all depends on how effective they can be in capturing her stem cells. If those darn shots work maybe 2 instead of 4 that would make us all happy! Another rest period for 2 to 3 weeks, after that, one day heavy blast chemo to hopefully rid her completely of any remaining cancer cells (any and all cells will be destroyed at this time). One day of rest then we are on to the re-introduction of her stem cells. There will be a bit of a waiting period, they say about 28 days to see if the engraftment is successful because things have to be just right!!

That's it in a nut shell. Which I know you are all happy about not having to weed through my babble.

Wish us luck!

Love,
Ret & Jack

Tuesday, August 11, 2009

Here We Go!

To All-

Although I've blogged before saying we're on our way, then they've pulled the plug, well now we're on our way. While I will tell you we've waited for this to begin for a long time it's not without some trepidation that's it's finally happening. As you can imagine the waiting we've already experienced has been hard, however knowing the real trying part of the process is now starting is truly more difficult. The cool part is that Ret is ready, the doc said if she wanted to wait to maybe enjoy the rest of the summer she could, but she said no let's get this thing started.

That said, we have our date set at the Hutch for September 10th, which seems a bit our there, but her Chemotherapy Mobilization will actually start before that at the clinic in Edmonds, that will be a 4 day chemo treatment followed by a 8 day rest period. After the rest period we'll head to the Hutch for the Stem Cell capture process which can take a few days depending on how many stem cells are captured in each session then following that she'll have another chemo session that will last an additional 4 days. The reason for the rest period is that the body, after being abused by the chemo, needs to have time to start healing itself thereby generating stem cells which is what is needed for the transplant. Again as I've said before I won't bore you with all the details but just enough to hopefully give you some understanding as to what Ret's experiencing.

How huge are friends and family when you need them most???? As I mentioned in my March 30th blog we need to be living within 15-20 minutes of the Hutch just in case Ret has any complications related to any type of illness that may develop so they can treat it as quickly as possible. Well here's how big.............................Ray Brandstrom has offered up his home, his privacy and his life to be invaded by Ret and I for a 3-4 month period to provide us the security we need to insure we get through as extremely treacherous time. While we graciously accepted his offer he was not the only one who extended a hand, but he was the closest, Ken and Janice Krekow offered their home as well as Bill Miller offering for us to stay at his home as well. As I've said before and I'll continue to say, I can't tell you how blessed we are to have all of you in our lives, you've made this very difficult journey as bearable as it could be.

Love you all.
Ret & Jack

Thursday, August 6, 2009

Another Quick Update

To All-

As I've mentioned before the ups and downs can be as challenging as dealing with the known issues in this thing. Anyway Ret had her Dr. appointment yesterday in which the Doc said she knows Ret's ready to go, mentally, but to hang in there as best she can to get this M-Protein down as low as possible. It's hard but they know, obviously by experience, that the outcomes for this particular cancer are much much better the lower that MP level gets. But with that instead of waiting a month for results, as we had been, they're actually calling us within a week to let us know what those results were so we should know by the 10th what the counts are. When that happens I'll drop another quick blog to let you all know.

And as always we can't thank each of you enough for all the calls, cards, letters and prayers that come Rets way............the support is TREMENDOUS!!!!!!

Thanks so much!
Ret & Jack

Monday, July 13, 2009

A Quick Update

To All-
While last week I blogged that Ret should be heading south to the Hutch in 3-4 weeks to begin the transplant process................... well as they say "not so fast buckaroo" seems as if her M-Protein has in fact been reduced even more, which is not what they thought would happen. It's a good because they want it a low as possible going into the transplant, but a bad thing if you're mentally prepared to move on to the next stage which Ret was. Oh well you learn to live with these ups and downs as you go along, but we'll get her there soon.

Love Ret and Jack

Wednesday, July 8, 2009

The Next Phase

To All:



It's been a month since my last post which has followed my normal path however I believe we'll on the web a little more frequent in the coming months.



We had our Dr. visit yesterday and as with most of them it was all good news. That said however we now know that the transplant procedure will probably begin in the next 3-4 weeks. As expected Ret's M-Protein count has leveled out, her last two counts were .9 and her oncologist expects that the results from yesterdays blood draw will be the same. Those results will be available Thursday or Friday this week. If the expected results come in we then revisit the Hutch for a Cancer reassessment which is standard procedure just to level set all the criteria to move forward. Unfortunately some of the tests Lil' Ret's not happy about because they've been done before and weren't much fun but she knows they are necessary. So we are moving on to the next phase of our journey.



As always I need to mention some special people, as you all are. My last post I mentioned Cindy Ellis and her personal challenge to complete a 13.1 mile cancer walk in memory of her son Brett, Ret and many who are stricken with this disease. I asked if any of you could donate to her cause please do so, and many of you did so thank you for that. Well our neighbor Paige Albert caught wind of Cindy's goal and decided to step up and help out. Paige is a in home sales representative for SILPADA DESIGNS, I'll provide the website so I won't blabber too much. Cindy is going to have an in-home party and all of Paige's proceeds will go toward Cindy's goal. Not to mention that anyone who visits Paige's website and purchases some of the cool jewelry she has along with mentioning Cindy's name those proceeds will be donated as well. Paige hopes to raise $1,500.00 for Cindy's cause. WOW!!! Anyway the website is listed below and the new mantra is

"Visit Buy Donate" Paige will probably kill me for that one, oh well.

www.mysilpada.com/paige.albert



As always Ret and I can't thank you all enough.



Love Ret and Jack

Tuesday, June 9, 2009

Dr. Visit

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, 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

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

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

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

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

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

Tuesday, March 10, 2009

Treatment Week Two

To All-

We hope all is well with each of you.

My hope is that I'll continue to be able to post once a week giving you the chance to keep track of Ret's progress. As I mentioned in my last post my intent was not to draw attention to anyone individual or group, but again you people are making that extremely hard for me. Again as I confessed in my second blog, I must confess here I should have mentioned this from day one.

As all of you know Ret has worked for Dr. Baker for 12 years starting chair side, her real love, then ending up running the office for his practice. In those 12 years there has been many ups and downs with staff coming and going, including Shelby working for her mom and just the day to day stuff. However one constant has been Ret's and Dr. Baker's relationship of trust, mutual respect and understanding of what it takes to keep the office humming. That trust and respect has never been made more apparent in Dr. Baker and his wife Sheryl's commitment to Ret in these trying times. Their commitment to Ret is to continue to keep her on the payroll as well as continue to pay her health insurance coverage. As you can imagine for Ret and I that has been huge it's also truly hard to put into words what it really means to us. Obviously as in most cases in life the monetary debt can be met and parties satisfied. However I can't tell you how hard it will be for us to repay our debt of gratitude to Steve and Sheryl. In the most caring of ways we hope and pray that won't be necessary, but mine you, if they need us we will be there. We are continually reminded of your love, your care, your concern and how deeply your human spirit runs.

Ret has had a pretty good week this past week. Actually she starting sleeping back in bed, the first time in over two months. Her strength is getting better, albeit slowly the early morning dizziness is subsiding which is good as well. Our first Dr. appointment since starting medication is the 20th of this month so after that we should have a little more information to work with. We now have our first appointment with the Fred Hutchinson Cancer Center and the Seattle Cancer Care Alliance set for March 30th. We will first meet with Ret's physician team which will handle the entire transplant procedure, then her care team which will handle all pre and post daily care, then my favorite the financial team.

Again as we move forward I'll try to keep you all update as to Ret's progress.


We Love you all.
Ret and Jack

Wednesday, March 4, 2009

Treatment Week One

Everyone-

Unfortunately for all of you, I think each time I login, I'll have a few words about things in general before I get to Ret's progress. The real reason for that is, not just because I like to talk, it's because if not daily but possibly every other day one of you or a group of you continues to do something for Ret and I that cements our belief that we are truly blessed to have each of you not only in our lives but with us as we fight this difficult battle. My intent is not to draw attention or praise to any one individual or group it's more to show your generosity and belief that with your support we'll make it through this trying time.

Ok it's the "Girls from the Wood" no not the "hood", but the "wood"..............Stanwood!!
Diana, Kim, Marie, Pam, Pat and Tami got together and made, I don't know a bunch anyway, of frozen dinners for us so that I can spend more time taking care of Ret instead of cooking. I'm not sure if they really did it so I could spend more taking care of Ret as opposed to making sure Ret gets a decent meal. Anyway I'm just trying to make me look good. Oh by the way remember in my last post I said, reading between the lines, and this one not drawing attention to anyone in particular, girls I even put your names in alphabetical, order yes Pam and Pat you too. Man I'm sick!!

Oh yea Lauretta! Week one on medication has been good just a little dizziness in the morning when she gets up. The drowsiness is still there, we're not sure if it's med's or just her body trying so hard to fight the cancer. Her strength is coming back slowly getting up in the morning is easier, she thinks it's the med's I say it's the "Rocket Chair" I'm just still trying to get credit, but I believe she's right it is the med's which is super. All and all the first week has been good and we look forward to each one of them getting better.

Hopefully some of you have had the chance to visit the websites I provided in my last post, they are extremely helpful also they'll provide you some insight into Ret's continued journey.

We love you all.
Ret and Jack

Saturday, February 28, 2009

Brief Update

To All-

Before I get into a very brief update I have to confess something to you. After a re-read of our first post I felt a little embarrassed that, with all the research that we've done regarding Rets condition that I basically said "you can do it yourself" I'm sorry for that. As you can imagine we have, as said, researched the daylights out of Rets disease so I felt at least I could provide each of you the ability to educate yourself just a little and who knows how that may help you, a friend, a family member or maybe someone you might just come in contact with. There are numerous sites for you to visit but because we are having treatment at the Fred Hutch and the Seattle Cancer Care Alliance I figured that at least I could provide you the links to those sites so here they are:

http://www.seattlecca.org/default.cfm

http://www.fhcrc.org/

Believe me they have more info than you comprehend as well as links to numerous more sites, hopefully this will provide you with additional information.

As I mentioned in our first post because the multiple myeloma attacks the skeletal structure, Ret has severe osteoporosis that basically of a 85 year old woman. An actually how we started on the road to where we are today was because she developed hairline fractures in eight of her vertebrae in her spine giving us cause to search for a remedy. Well because of her osteoporosis she has to sleep in a recliner, because laying flat in bed exerts too much pressure on her spine. Unfortunately it's extremely difficult for her just to get out of the chair in the morning, usually it takes anywhere from 15 to 20 minutes. Ok I know you're saying where's he going with this, guy's this is for us, I bought one of those power lift recliners, what took 15-20 minutes now takes maybe 5! Guy's guess who's going to use it after we get her back on track me of course naps, beer, ball games and one touch of the button to help lift me up and get me to the bathroom how cool is that, just think then Ret won't have to do it. But seriously you can't imagine what a psychological boost it has been for her.

In addition I hope you understand that my crazy humor is also a way for us to deal with what has become our biggest challenge in life. What I also hope you see or maybe read between the lines is that it truly is the little things that can make a huge difference in how someone feels about their condition, themselves or just trying to navigate daily life when burdened with life challenges.

Again thanks for all your love and support.

Ret and Jack

Thursday, February 26, 2009

To Our Friends and Family-

It's due to your love, thoughts, wishes, prayers and overwhelming support that we've created this site or blog I guess. If it were me that had this dreaded condition, instead of Ret, one phone call would have done it. Sorry I just had to throw that in. Again that is why we created this site to help you follow her journey.

As many of you know and for those who are visiting here for the first time Ret has been diagnosed with Multiple Myeloma, a blood borne cancer that affects the skeletal structure. Luckily it's treatable however as with most cancers not curable. I won't bore you with what I know and don't know at this time, however there a number of sites available that you can visit that will provide those of you who might be interested in researching this condition further.

Safe to say it's been along journey already to get to this point, we've had about five months of trial and error numerous doctors, tests, retests, pushes, prods, needles and I guess too much more to mention. That said we've finally reached the point where treatment started, actually yesterday. We're lucky that her treatment is a daily dose of a drug called Thalidomide, yes the 1950's drug that was called "the flipper baby drug", you can research that as well. But basically it helps cut off the blood supply to the cancer cells. I know that may not sound lucky but at least we're not making daily trips to some clinic somewhere in the middle of the day. Plus it's only $5,300.00 per months supply, thank god for insurance. The goal is to get the cancer into remission, capture some of Ret's bone marrow, freeze it then do a "Stem Cell Transplantation" know as "Autologous Stem Cell Transplantation" which is using the patients own cells. This has proven be more effective than using donors for the transplant. As with all treatments they are dependent upon how the patient accepts or rejects those treatments and the time lines for those are just as varied.

Hopefully this has given you a little background on Ret's condition, our plans for moving forward and a way to keep in touch as we move ahead on her journey to recovery.

Also we hope that you understand that this is the best way for us to keep so many of you up to date on her progress. Again as I said earlier, if it was me not problem one phone call would do it, but with Ret we don't have enough phones, phone lines or time to answer each of you individually.

Again, thanks for all your support.

All Our Love
Ret and Jack