December 2014 Surgery Sisters

Sandra.  That's terrible news for the both of you.  I was thinking of you and hoping to hear anything other than that.   I will pray that a donor can be found asap for him.  Keep yourself as positive as you can and the same to him.  He is lucky to have you with him as I know you will want to mind him as well as he has minded you on your journey with this beast.  Please God he will find a donor very soon.

Big hugs((((((((())))))))))))

Sandra: Sending you prayers. Will send the word out about the registry and pray a donor is found soon.

Scottie

Every day now is full of appointments and more medical info. We are starting to get more info on what to expect. Assuming the bone marrow transplant is a success, he will be in the hospital for a month, then come home but be quarantined until day 100 at least. The house must be completely clean at all times. There can be none of the dust, mold, or spores that are in all our homes unless we clean 24/7. Visitors must be kept to a minimum and will have to leave their shoes outside so they don't track in dirt, mold, or spores. Mike won't have an immune system to speak of for months so he has to be protected. He can't be around animals, all the plants have to go, he can't go outside if the neighbors have recently mowed their yard, can't go in our pool all summer, etc. etc. etc. It's overwhelming! He can't even be exposed to the sun, which surprised me. Apparently he will have to have to have a hat, long sleeves, and strong sun screen whenever we leave the house for daily trips to the hospital. The sun's rays can cause Graft vs. Host Disease! I had no idea. I will have the carpet removed within the next week or so and start packing up things that are just dust-catchers. The bathrooms have to be checked to make sure there have been no leaks that could harbor mold behind the tiles or anywhere else. All this has to be done now because he can't be in an environment that has had renovations within the past three months. We think the transplant preparation will take about that long so the sooner I get to it the better. Today we met with Nutritional Medicine. He has lost so much weight and is in such poor nutritional shape, he has to be "beefed up" quickly or jeopardize the transplant. Next week we'll have appointments every day at the hospital. All his organ systems have to be evaluated and a "base line" set so the transplant surgeon can tell when something is going wrong after the transplant. We start with pulmonary function testing Tuesday. The first port goes in Thursday. Just before the transplant, another one will be put in the other side of his chest because the line has to be big enough for the bone marrow killer chemo to be administered very quickly.

I remember when I thought I had problems. Breast cancer and surgeries were a piece of cake, I just didn't realize it.

Sandra, so very sorry to read about your husband's diagnosis. You both are in my prayers.

We just vacationed with a cousin that had a crisis like this 2 years ago. Went through the transplant with no pets an all the drill. It was a challenge for a while but happy to report he is doing great. Praying your husband will have a similar experience!

Hi Sandra.  What a road is in front of you both.  You will need all your courage and strength with all you have to do.  But it will be worth it in the end as please God DH will accept the transplant well and recover as quickly as possible.  My prayers for you both.  Heaven knows you already had enough on your plate to deal with without this on top of it.  Life can send us raw deals alright!!!!!

Sweethope.  That sounds like a terrific organisation you have in the States for helping with cleaning etc. for cancer patients.  The only thing I know of like that in Ireland is done through the hospice foundation which will help with domestic chores, etc.  Perhaps I'm wrong, maybe someone else from Ireland will correct me on that.

knmtwins.  The same goes for that bone marrow testing across the states. A great idea.   We have a registry here too but its not so organised as yours.

Its great hearing about where all you American/Canadian gals live - I feel like I get a peek into your lives.  Great descriptions.  Sometimes i feel like I'm right there.  I've visited the states and Canada a few times and love the wide open feel.  That's cos i live on a small island I guess.  Lovely but when you've lived here as long a me, you're very familiar with all it's nooks and crannies. Here in Ireland at the moment its very cold -4 or so at night - that's celcius - not sure about Fahrenheit.

Best to all.

Goodprognosis, we lived in Europe for five years and the thing that impressed me the most when we got back was, like you, the wide open spaces. Unless you live in an urban area like New York City or Chicago which look more European with tall, close buildings, you are surprised by the short buildings with so much space between them.

My mother's grandfather immigrated from Belfast. His family brewed whiskey! Mother found copies of the label they used on the bottles.

Sweethope, since I have just finished reconstruction, I don't qualify for the wonderful cleaning service. But it's a great idea especially for those who are going through debilitating chemo. One of my daughters is organizing people to come next weekend to rip out all the carpet in the house. We're going to powerwash the concrete slab, then seal it. There's a lot of work to be done in the house. I'm rounding up boxes and will start packing up all the dustcatchers, extra furniture, etc. It will make the house much easier to keep clean during the 100 days of quarantine he will have at home if he makes it past the first 30 days in the hospital.

Sweet, good ideas! Of course after what you've been through, you are an unfortunate expert. I haven't given up on the cleaning service. When my older daughter gets back to town I'll have her speak to them. Right now I've fixated on cleaning, sorting, and washing clothes.

SpecialK, I forgot to reply to your question. My husband has one sister but the doctors told us siblings are only a match 20% of the time. Even twins don't necessarily match unless they are identical. His sister is 60 and they prefer donors 18-44 but the doctor is going to contact her anyway. Donors are accepted up to age 60 in the National Bone Marrow Donors Registry. Younger people have more "potent" stem cells.

There are 10 major hormone markers on all our cells that tell our bodies that the cell is "self." The doctors look for a potential donor with the same markers and hope for a 10/10 match. They can go with a 9/10 but the chances of Graft vs. Host Disease after the transplant (aka transplant rejection) go up. The transplant surgeon says ideally the blood type is the same but it's not a deal breaker. It's less important than those hormone markers. In fact, he can even have a different blood type after the transplant! He has a chance of being allergic to whatever his donor is allergic to as well. It's fascinating actually.

SweetHope.  I will try to send some photos of 'the emerald isle' but I'm a bit of a dope with technoliogy and have only an old phone - but leave it with me.  Maybe we're related - so many Irish have relations in the States, you never know.  At the moment the whole country is still up in arms over water charges!  Yes, I kid you not.  DH says we should re-christen Ireland 'convulse.ie', ha,ha.  There is always something we're all arguing about.  But I think that's part of  being Irish.

Sandra.  If you find any of that whiskey - send it on over here!.  DH and myself also spent 12 years living on the continent - Belgium.  It was fantastic and very different to Ireland.  But home is home.......Will keep you and your DH in my prayers.

Good,

I LOVE Belgium. My favorite city is Brugges and we visited often. Where did you live?

Trying again for you SweetHope.  Hope it works this time.

Goodprognosis, thank you so much for the picture. That is exactly what I expect Ireland to look like: serene and green. It is so beautiful.

I just got home from port placement surgery. So having this lovely photo sent especially to me all the way from Ireland gives me the warm and fuzzies!

My father use to say that I would argue with a Stop Sign, so I'm definitely Irish. I hope we are related!

Hi Girls,

Glad you like the photo.  I didn't take it myself - I'm not that good at photography- of course I'm great at everything else.  Yes, SweetHope that stop sign bit certainly sounds Irish...Another great expression we have is 'he'd fight with his fingernails for growing'.

Hope everyone is doing well.  I follow all the posts. knmtwins, thanks for starting this thread.

strait lover,

Did they key u go back to work with the drains and pic