Epilogue and looking forward

Nearly two months have passed since Ed left us. It's still so strange that he's really gone; that he's not just in the hospital. Stranger still is this new found thing called time that I seem to have much more of. Don't get me wrong, I'm still busy; I'm just not insane (no comments peanut gallery!) I obviously still miss him but I'm getting to the point where I feel like everything we endured prepared me to be able to move forward without him. I still get that inevitable question of "how are you doing?" from everyone - please don't take any of this the wrong way if you've asked me this by the way!- and I've come up with a few standard answers: "Oh we're hanging in there"; "We're doing as well as can be expected thanks". But I sort of wonder, does anyone really want a real answer? I could come up with doozies - "I got out of bed today so that's positive"; "I finally feel like I'm coming out of my fog"; "I haven't cried in at least a week". LOL. I'm in the middle of this book called "A Widow's Story - A Memoir" and the author's favorite response to the "how are you" question was "Suicidal, thanks. You?" I just find that funny for some reason!

About two weeks after Ed's death, I'm going through the mail. At this point, all I get in the mail are hospital bills and sympathy cards - only the latter are truly welcomed! - so I'm kind of excited when I see a larger white envelope. I don't pay attention to the sender address as I'm ripping open the envelope so am a bit taken aback when I see it's from the nbmtLINK. Inside is a booklet called Voices of Hope and Healing - For Bone Marrow/ Stem Cell Transplant. There's also a cover letter thanking Ed for his story in their latest publication. I about fall over as a I realize that Ed made a contribution to this publication nearly 2 years ago as he reflected on his 5 year anniversary - I had no idea he did this. I remember how hopeful we all were after he achieved that milestone; it made me profoundly sad as I read his essay entitled "I had Leukemia, Okay" (visit the link to the booklet I listed above and mouse over the quilt segments to find Ed's essay). I just hope that the journey of triumph he expressed in his essay will provide hope to someone else just starting or in the middle of their journey. He always wanted to help others find hope in the midst of some pretty bleak circumstances. Perhaps this was enough of a purpose for his struggle.

Last week I was at the nail salon (yes, something I can now do with all this time!) and the girl doing my nails asks me "so you married? have boyfriend?". I paused big time before finally saying "I'm widowed". That was the first time I've had to say that out loud and it was so strange. All these little outward things that define someone who's married suddenly don't belong to me anymore - checking that "M" box on forms; wearing wedding rings; having someone at home to kill the spiders that seem to stalk me. It was not part of my plan, but it seems it was part of someone's plan so I need to just through it. For now, I'm trying to notice these things, acknowledge their part in my new reality and move forward.

Life with just the kids and me is beginning to normalize a bit. My parents don't live with us 24/7 and are mainly coming up on the weekends. My dad and Ryan are taking a dance class together every Saturday so he can't miss that! And we had Ed's mom and her husband over last Sunday for family dinner along with my parents, which was great. I think we'll have to try and make that more routine. During the week it's pretty much business as usual - I'm back kicking ass at work and making my strategic moves up the corporate ladder (lol); Regan is up and down, but mostly on an upward trajectory with school again as well as doing great in her 15 hours of dance each week; and Ryan, well Ryan is awesome. She's blissfully unaware of the tragedy we've all experienced and helps keep us smiling every day. This recent picture just says it all. I think we're going to be OK.

URGENT: Donations Update

One slight modification to my last post. In lieu of flowers, please consider a donation to the Ed Thorp Memorial Fund. You can send donations c/o Renee Kochanek 49730 Pine Ridge Drive, Plymouth, MI 48170. Sorry for any confusion!

A celebration of life

For those of you able to join us in celebrating Ed's life following are the details for this week's activities:

Wake
Thursday and Friday February 24 and 25 2pm to 9pm
Vermeulen Funeral Home
46401 West Ann Arbor Road
Plymouth, MI 48170
734-459-2250
*Friday evening will also have a scripture service and remembrances shared by family and friends
**In lieu of flowers, please consider a donation made payable to the Ed Thorp Memorial Fund.

Donations can be sent to:
Ed Thorp Memorial Fund
c/o Renee Kochanek
49730 Pine Ridge Drive
Plymouth, MI 48170

Funeral Mass
Saturday 6pm
Our Lady of Good Counsel Church
47650 North Territorial Road
Plymouth, MI 48170
*Dinner celebration to immediately follow at the OLGC Parish Social Hall

There are several local hotels available:
The Inn at St. Johns
44045 Five Mile Road
Plymouth, MI 48170
734-414-0600
Comfort Inn
40455 Ann Arbor Road
Plymouth, MI 48170
734-455-8100

Hilton Garden Inn
14600 Sheldon Road
Plymouth, MI 48170
734-354-0001

The Red Roof Inn
39700 Ann Arbor Road
Plymouth, MI 48170
734-459-3300

 

Thanks again for your continued prayers and support!

Goodbye my dearest love....

After many months of struggle and fighting Ed passed away peacefully yesterday at 11:10am. It was very quick, without any drama, and his mom and I were both with him. I am heartbroken he had to leave us, but he no longer feels pain; he no longer feels tired; he no longer fears; he is at peace. For that I am profoundly grateful.

We are still making arrangements, but at the moment, we're tentatively planning on the wake being Thursday and Friday with a Funeral Mass Saturday. More details to come, but the wake will be at Vermeulen Funeral Home in Plymouth with the Mass at Our Lady of Good Counsel parish in Plymouth. Please check back here for more info.

Much love and thanks for your prayers and support - Kelly, Regan & Ryan

Onward and upward

After 23 days, Ed is finally healthy enough to move on to the next phase of his journey - rehabilitation - and no not the kind with Dr. Drew and Lindsay Lohan!

When I last wrote, Ed was fighting back the infections that had made him so ill; during his three week stay he made really remarkable progress. Not only did the infections respond well to treatment, but Ed began eating more normally. His constant "Food Network" viewing must have helped because he began saying things like "wow, that sounds really good" and "I feel like tostadas"! When he asked me to bring him magazines he specifically requested "cooking". I can say for the first time since October I really feel like I have my husband "back". He's more himself than he's been in months and it's a huge relief. It's hard enough trying to fight this illness, but when your best friend, partner and love isn't by your side to do battle, it's really disheartening! The decision we made 3 weeks ago to return Ed to the BMT unit was really tough, but it's the best decision we could have made. He was truly, truly sick and if he had stayed home just a few more days, it could have gotten really bad. So, I'm grateful for the strength I mustered to make the right choice.

During the last 10 days, in particular, Ed really made great leaps forward. He was eating enough to be taken off TPN (the IV nutrition he'd been on since October) and his nausea, pain and intestinal issues are all but gone. He still has some sporadic pain and nausea, but we no longer feel like we have to travel everywhere with a bucket - not really a fun accessory!

So yesterday we moved Ed to his next phase - rehab at the Rehabilitation Institute of Michigan. It's part of the Detroit Medical Center campus where Karmanos is located and it's a very reputable facility. For those Red Wings fans out there, I've heard it's where Vladimir Konstantinov was sent for rehabilitation following his 1997 limo crash. There Ed will work to regain the strength he's lost due to prolonged steroid use (it's one of the main immuno-suppressive drugs to combat his GvH) and we're hoping to start to work on regaining some of what he lost pre-transplant with his neuropathy. The next few days the staff will work with Ed on his treatment plan - he'll work with Physical Therapy, Occupational Therapy, Speech Therapy and Neuropsychology (the latter are needed to help Ed recover from the great amounts of chemo he's received). He'll work roughly 3 hours per day in therapy and spend the remainder of the day eating and resting - it will be very hard work! We're not sure yet the duration of his in-patient therapy, but it will be at least a week to 10 days. Given Ed's age and good health (yes, he's in good health compared to others!) he should respond very quickly.

Thanks again to one and all for your continued thoughts and prayers! We could not have gotten here without all your support! Please continue to do what you do!

Love - The Thorps

PS. The picture is from about 2 weeks ago. I think he looks pretty good, but he looks even better today! I'll try to get some rehab action shots to post soon!

Home, holidays and new challenges

Hello and Happy New Year to all!

We've had quite a bit of activity since my last update. After my last post, Ed continued to move forward and was discharged to come home November 29 after 74 really long days in the hospital. We were glad to have him home, but it was a really tough transition. He struggled to make the mental transition from hospital to home; as such we all had to work hard to keep him moving forward and doing all the things required as part of daily life. Then, there's all the "nursing" I took on! Ed came home on over 20 medications as well as IV nutrition (TPN) since he still isn't eating enough. Some of you might think I'm absolutely nuts to add "nurse" to my list of "hats", but when faced with a situation like this our family just rolls up the sleeves and gets it done - there is no other choice! We had a really nice Christmas together. Ed was having a good day and the kids were really
excited about Santa!

About the 4th week at home, instead of improving, Ed's condition actually began to deteriorate. We tried everything we could think of to motivate him to move, eat and participate in daily life; but nothing worked. On Jan 2 I made a very difficult decision - it was clear Ed couldn't be home and needed intensive rehabilitation. Our little team at home could no longer manage his care. The next day I talked with Ed about my decision, but in the course of our conversation, I also noticed he seemed to be having difficulty focusing on our conversation and even remembering details I had just told him moments earlier. Something else was clearly happening. I talked to his team at Karmanos and together we decided that instead of waiting 2 weeks to consult with a team from the inpatient rehabilitation center, we'd bring him back to the BMT unit, do a full workup and get him back on track. Thank God we made that decision quickly as Ed's downward spiral was rapid and scary - when we took him to the hospital Jan 5, he barely had the strength to stand on his own and was having trouble talking. Blood tests quickly revealed that Ed had contracted 2 Bacterial infections - both can cause the extreme fatigue he'd been experiencing as well as the issues with his mental status. The good news is that these infections can be treated with IV antibiotics and after 5 days of treatment, Ed's status is steadily improving day over day.

Of course, nothing is easy with this journey, so in addition to the infections, the doctor's have also identified a problem with Ed's liver. He has a "pseudo-aneurysm" in a vein on his liver. The fix for this is similar to the procedure they might do for a brain aneurysm - they insert a wire with coil into the vein to prop up the vein walls and clear the aneurysm. That procedure is scheduled for tomorrow morning and we're optimistic that it will clear up this latest problem.

So, what's in store next? Well, if nothing new happens, I think Ed will be in the hospital a few weeks to recuperate and regain some strength from these latest challenges. Besides the quick improvement we've seen from his being on antibiotics, Ed has also been doing better by eating more, having less nausea and just overall improving. So, again we're optimistic. Once he's medically ready to leave the BMT unit, we'll be looking to have him transition into an inpatient rehab facility. During the time he had at home, it became really clear that Ed needs intensive physical rehab in order to function at home. The neuropathy he experienced prior to his transplant really left him quite debilitated and that's been compounded with the steroid therapy he's received to deal with his GVH - unfortunately, use of high dose steroids has a price in that it causes severe muscle weakness and wasting. We're not sure how much Ed will be able to recover from a physical standpoint, but we need to do all we can to help him move the ball forward!

So, we're optimistic for a new start in 2011. We know that tomorrow will be better! Stay tuned for more updates. My new year's resolution is to get the update out a little sooner next time! :-)

We leave you with love and highest hopes!

The Thorps

Giving thanks

I've been thinking about a title for this entry for the past week. I was going to call it "slow and steady wins the race"; or "another (small) hill to climb". But in this week of Thanksgiving, I thought it more appropriate to focus on the many things we have to be thankful for. First off, the update.

Ed has been making steady and remarkable progress these past 3 weeks. I know when I wrote last, we were really in the depths of darkness as Ed was dealing with one problem after another. But, as he always does, he is pulling through. His GVH of the gut has been getting better every day as has the GVH of the liver. And he's been moving, walking, exercising and climbing stairs nearly every day for 2 weeks now. This is incredible as he’s not only been bed-ridden for quite some time, but some of the medications he’s been on cause muscle weakness. Older patients often have to transition to in-patient rehab to regain strength before going home. He’s been slowly reintroducing food to his routine; this will be the slowest part of the process as his digestive system learns how to do its job again. And this past week we've been focusing on a list of "tasks" he'll need to complete to be able to come home. This includes converting all his IV medications to oral so he can take them at home; and beginning to closely monitor his food intake so the staff can see he’s taking in enough calories. The “food-thing” as we call it, will be the toughest part for him and will take the longest to normalize, but it’s a start. We’re not yet applying a date for when he’ll come home and are instead focusing on his daily accomplishments and “checking off" his tasks. But, I can say confidently it’s going to be soon. The finish line for this leg of the race is absolutely in sight. I’ve seen it off in the distance for some time and it’s closer now; Ed is just now seeing it for himself.

Here are some things we’re thankful for:

• Improving strength
• Lack of infections
• Taking one more step today than yesterday
• A good night’s sleep
• Learning to smile again
• Warm chicken broth
• No swelling in feet
• Less pain
• Less nausea
• The caring and amazing nursing and support staff at Karmanos – Taylor, Natalie, Lyn, Jillian, Sharyll, Trish, Jessica, Melissa, Lauren, Nicole, Jill, Steven, Catherine, Ann, Nathan, Katherine, Jesus, Brad, Crystal, Tina, Mertyl, Brandy, Tatiana (and anyone else we didn’t list!). You guys have seen us at our worst and are there for us day and night!
• The doctors at Karmanos who never stop answering all our (well, let’s be honest, MY) questions and work with us to find solutions that are right for ED and not “the patient”
• Our healthy and beautiful children
• Regan’s honor roll triumph despite all the turmoil going on at home!
• Our supportive parents who work tirelessly to keep things normal at home and at the hospital
• Our supportive friends who call, email, text, send cards, send meals (or organize them!)

We wish you all a Happy Thanksgiving and hope that you have as much to be thankful for as we do!

With love and highest hopes – The Thorps – Ed, Kelly, Regan and Ryan