Dr. Bobs Adventure

We've created this blog for several reasons. First is to keep family and friends(including Bobs' pts.)informed of Bobs' condition while he undergoes treatment for Acute Myelogenous Leukemia(AML) at HUP. You may also write to Bob by posting a comment, which I'll print for him to read. Please feel free to pass this blog site on to anyone you think may want to join us.Instructions to blog are listed under day 12, and bobs' address etc are under day 14. Click on April Archives to find both.

Tuesday, October 07, 2008

IS ANYBODY OUT THERE?

I certainly will understand if nobody ever reads this blog again. I have many reasons for not writing, but they will only sound like so many excuses. So let me just say we have been on total overload these last few months....to say we have been overwhelmed would be an understatement. So I do sincerely apologize for being so out of touch and hope we can start over. I just spent a few moments reading the very first blogs, back when Bob was first diagnosed until he was found to be in remission(the first time) which would have been in July '06. And I was dumbstruck once again at how incomparably fortunate we've been to have such a vast network of support....between our families and our extended family of friends and patients. And I truly felt so sad at having lost that closeness that we shared back then. This fire though, has changed Bob and I. While we are immensely grateful for having gotten out of the house unharmed, and we know that what we lost are just "things", most of which can be replaced, this has been the most difficult 10 months of our lives. It has been so emotional, so much anger and grief, and then so much guilt for not just feeling grateful to be alive. It has left me w/ an empty feeling that even furniture shopping hasn't conquered(and I love fruniture)!! The only time I feel real joy is when Meg, Kate and Matthew are around. There's something about holding a baby who is so patently happy, who smiles all the time...he has captured my heart, as well as Bobs' completely and we love him to pieces. And it has been a busy time for other reasons also. Bob didn't feel well back in the Spring. The graft vs. host disease has continued to plague him and I'm sure the added stress had to affect his health. That being said, he just had an appt w/ Dr. Luger yesterday and on paper he is doing great. He had an engraftment study in August....that's a blood test which shows the percentage of donor cells vs. Bobs' and the result was 99%........which means that 99% of Bobs' marrow is from the donor. So yesterday, she told him that all the little things that bother him will probably always continue to do so.....those being, dry eyes, mouth and skin, fatigue and loss of appetite. He also has an infected thumbnail right now that he's on abx for, and needs to see a podiatrist for an infected ingrown toenail.....all little things that seem minor, but need to be kept in check. He also has chronic post-nasal drip that causes a bothersome cough. Bob is a svelte 167# these days...that's his high school weight for those of you who knew him when. And the running joke these days is that Bob didn't lose the weight....I know exactly where it is....I just have to look in the mirror to find it. At any rate, we are trying our best to hang in there. We finally finished the paper work for our insurance company in September....that was the contents and clothing inventory I think I told you about. We had to list every single thing we could think of that was in the house, as well as its' age and original cost and the replacement cost. Just thinking about it makes me shudder. Then we come to find out that we only get full replacement value on items that we actually buy and show proof of purchase of.....anything that we decide not to replace, we only get a depreciated value(translate-squat). So for instance, I don't think Bob is going to need 20 new wool, tweed, or linen sportcoats, and I don't think we will be buying 1,000 new books. So essentially we are going to lose a lot more than we are going to get back. We are going to have what is in essence a new home, although let me assure you all, this is not the way to do it. And we have upgraded a few things so we will actually owe money on the house when all is said and done. But we're alive and that is what I try to focus on. We hope to be back in our home by the end of this month, but I'll believe it when it happens, as we've already been pushed back twice. Debbie keeps asking if I'm excited to be going back to our new house and new furniture, but the truth is I don't get excited about too much these days. I'll be thrilled to be home, but I'm also worried that Bob is going to have stairs to climb again(we've been on one floor here).



Well, I just read this over and I contemplated deleting the whole thing b/c it's so negative and maybe I shouldn't have written today.But I've been at it for over an hour now, and it's what's happening, so I'm letting it stand.



I do want to tell you though before I go that Debbie is no longer in remission and just went in to HUP yesterday for a course of some new, nasty chemo. So please put her to the top of your prayer list. She has never lost her grace or resilience or her fighting spirit.....an inspiration to everyone who knows her.



And I'm requesting some prayers and good wishes for Mary and Tom Williamson who had a devstating house fire last week. Mary is the daughter of our friends Bon and John Handerhan and Tom is the son of our friend Lee Williamson. They were just married in June and had extensive damage from a fire that started in their dishwasher. In fact they will be out of their home at least 6 months...and we feel so badly for them, so awful to start out like that. But thank God Mary is okay b/c she spent time coaxing their dog out from under a bed and had trouble finding the front door in all the smoke. So, each day is a gift isn't it? I'm going to stop grousing and be more positive.





I also want to thank our pal Lee W. for a wonderful nurses weekend at Silver Lake. Friday night was so, so special....a time I will cherish in my heart forever, and you are a special friend.





And I thank all of you too, if anyone is reading this anymore. I know you're still keeping us in prayer and that means a lot to Bob and I. We too thank God for you and ask Him to bless and keep you. Hoping you are all well.





All our love,


Bob and Mo

3 Comments:

Anonymous Anonymous said...

well, im here!! mo.. you have a right to be a little negative.. house, husband with leukemia, friend with luekemia.. but,, think about the positives.husband doing so well considering.. nice house to move into that you will soon make a home,, beautiful grandnephew..and a man with his high school physique!!
i will continue the prayers for bob, and debbie,, and so glad you all had last weekend together.. ttyl.. love.. mdf

October 07, 2008 9:53 PM  
Blogger jean said...

Hi to the both of you,

Yes we are all here, and yes you have the right to be a bit disgruntled with all that you have been through. Please know that we are here for you. I have you, Bob and your family all in my prayers.

I can't believe that Bonnie and Lee's kids had a house fire. Scary.

My sister's husband's brother, wife and 10 yr old son lost their apartment to fire just two weeks ago, they had to jump from the second floor. Ken and their son made it our without injury, Sue broke her back, tore muscles in her leg and also did something to her heel. They have lost everything. They definitely could use a few prayers.

I will email you when I am back from Italy. Hopefully you'll be back in your home by then.

love, hugs, and prayers,
jean

October 08, 2008 1:08 AM  
Blogger Matthew said...

First off, Mandi and I have been waiting for an update for a while. We check here every days hoping. Then again, we talk you guys so we generally have an idea of what is going on.

Second, you have every right to be disgruntled. I keep telling people that life isn't all peaches and cream. And, well, sometimes its just perfectly fine to be annoyed. It is perfectly fine to vent as well. Blogs are good for that.

Let us know if there is anything we can do to help. We may be stuck in Memphis, but that doesn't mean we might not be able to come up with some nifty ideas.

Hugs and good thoughts from the South.

Matt and Mandi

October 13, 2008 9:33 PM  

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