December 2014 Surgery Sisters

jbdayton

Oh Sandra, I am so sorry for the devastating news for your husband. Hopefully, a donor can be found. I will add him to my prayer list and you as well.

goodprognosis

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((((((((())))))))))))

knmtwins

Sandra - prayers, good thoughts, good energy and my fingers are crossed. Do you guys know yet if there a match in the registry?

EVERYONE - Here is a link to sign up and take a cell sample from your cheek to get on the registry, unless we are 'cured' in-situ, we don't qualify as we have had cancer, but maybe our loved ones or your friends would be willing to sign up, if they haven't already. Also, when I signed up 15 years ago, the registry was low on Hispanics, African American's and Jewish people. Not sure if it is still that way or not. http://bethematch.org/Support-the-Cause/Donate-bone-marrow/

Keep us posted, and maybe if you don't have a family member or registry match, we can get the word out through our social media connections.

Scottiemom11

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

Scottie

gemmafromlondon

I am sure you are not being a baby. Each operation is different and everyone has different pain thresholds. You have obviously got strength in returning to work quite soon - especially if you are not comfortable. I think you should speak to your nurse/doc to check it out. Maybe it is just taking more time. Don't forget to exercise the arm. All the very best.

sandra4611

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.

 

SweetHope

Dear Sandra, your surgery is less than a month old. How are you healing?

Please contact cleaningforareason.org "Fighting cancer is difficult enough, but living with it is even tougher and that's where Cleaning For A Reason steps in. As a nonprofit serving the entire United States and Canada, we partner with maid services to offer professional house cleanings to help women undergoing treatment for cancer, any type of cancer. To date, we have provided more than 17,000 cleanings for women with cancer with a value of more than $4.5 million in donated cleanings, and partnered with over 1,100 maid services."

Gentle hugs and strong, positive thoughts for you and Mike and your family.

Becky.

Gingercake

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

Gingercake

knmtwins Thank you for replying. I actually finished chemo in late October and my eyes have not let up. I initially tried drops but at some point I noticed my left lower tear duct was completely closed so any drainage just runs out of the corner of my eye. My right eye isn't as bad, the duct is just narrowed. My procedure is scheduled for the 28th and I'm saying my prayers to get some relief from this

Chloesmom

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!

Lmcqueen

gingercake,

I have had problems with dry eyes as well but not from chemo. They inserted the stents in my ducts and it did help. However, they will fall out on their own if you rub your eyes. I would definitely try the Systane. I still have to use it mostly just at night but if your ducts are closed that might be the best course for you if insurance will cover it. I hope it gets better soon.

goodprognosis

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.

SweetHope

Ah, Ireland! My ancestral home. Good prognosis, you live in the one foreign country I must see. My brother did a lot of genealogy studies of our family. We are descended from the Earl of Mar who lived in the original Balmoral Castle. Unfortunately, he backed the wrong man for King, so he had to flee the country. So, not only am I unlucky with BC, but also unlucky with dumb relatives!

Please, please, please send some pictures of your island. Even at -4 Celsius, I bet it is b-e-a-u-t-I-f-u-l.

sandra4611

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.

SweetHope

Sandra, I hope you love your concrete floor! Seriously! Thanks to Katrina, I have a lot of experience with bare floors and I wish I had just sealed them and been done with it. I love the look...very Scandinavian. Add a well worn recliner or two and you have an eclectic, modern decor!

And, trying to work around a lot of "things" made me realize that I didn't own them, they owned me. The trailer I lived in during those times was so stress-free because it was so uncluttered and there was a "place for everything and everything in its place". (Gheez, I'm full of cliche sayings this morning.).

Boxing up a lifetime of memorabilia can be emotional. Let your DD's friends do that. Once out of sight, out of mind (Gheez! Again!). And I bet you collected some lovely things in Europe. They will have double meaning when you get to unwrap them again in a couple of months.

I am very disappointed that the cleaning service can't help. They advertise "any kind of cancer" qualifies, so I thought they would consider Mike's dx. Oh we'll, your lovely daughter and friends will be more fun. (Even better if you had some of your great-grandpa's whiskey.)

Take special care and please don't overdo it.

sandra4611

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.

LiLi-RI

Sandra: I am so sorry to hear about Mike's diagnosis. I am saying a prayer that you WILL find a match. I have been following your posts since 2013. You are a firecracker! I know you can tackle this clean-out process! Just remember to follow your own great advice.....take time to care for yourself too! Lis

sandra4611

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.

SpecialK

sandra - the reason I asked is that the theory behind siblings being a better match potential is that they have the same parental contributing DNA, whereas children or parents of the patient only have half. The company I worked for prior to diagnosis did marrow registry and harvesting, as well as the normal array of blood products - marrow stem cell harvest is far less barbaric these days as it is often able to be done through much the same process as a blood donation, instead of having the marrow extracted with a large bore needle through the hip.  Graft v Host is also a potential issue if the decision had been to treat him with successive blood transfusions - it is an issue with cancer patients of all types, those with sickle cell, or anemia, who require numerous blood transfusions.  It is one of the reasons that cancer patients receive single donor products that have been irradiated, are in type when possible, and are CMV negative (unless the patient tests positive for previous exposure).  I know you will get through the preparations, difficult as they are.  I will hold you both in my prayers as you start on his road to wellness.

goodprognosis

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.

knmtwins

Sandra, prayers are continuing, and just think how easy it will be to keep your house tidy and clean after all this initial work.

Ladies - I did chemo first, therefore have little armpit hair growth (at the momment), so Saturday was the first time I shaved and I freaked out and stopped...

1) numb - wow that was odd, but I've been shaving my pits for 40 years, so could do it, I thought...

2) TE under arm pit, moves into arm pit when you raise your arm to shave, well that was crazy, so I stopped, as I said very little hair, so who cares.

3) I had only 2 nodes removed, am I 'allowed' to shave that armpit, have blood draws, bp cups??? Sure hope so, as I've done shaving and bp cups.

sandra4611

Good,

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

goodprognosis

Hi Sandra.  We lived in Brussels but did visit Bruges.  It's lovely too.  On the continent you can drive to anywhere, that's one of the things I liked.  That matters when you live on an island.

This is for  SweetHope.  Hope you can see it.  It's Wicklow mountains, Dublin....

C:\Users\User\Pictures\wicklow-mountains-photo_987998-770tall.jpg

 

 

goodprognosis

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

 

LiLi-RI

knmtwins: When I had my sentinel node removed, my BS said no more blood draws, blood pressure cuffs, but shaving with an electric shaver was OK. I do still shave with disposable razor. Did you have a SN removed? LiL

SweetHope

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!

sandra4611

STUNNING photo. Thank you!

goodprognosis

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.

Straitlover

Sandra, so sorry for your DH's diagnosis. My mother did not qualify for a transplant because she was in bad shape from the myeloma. Be sure to hunt up some of the MDS forums (one I think is marrowforums? also mds foundation?). I visited one for a little while, but since all my mother could do was the blood transfusions, it seemed like a waste of my time to read about all the other things. If you need any kind of financial assistance, please check with the Chronic Disease Fund http://www.gooddaysfromcdf.org/ and the Leukemia and Lymphoma Society http://www.lls.org/diseaseinformation/getinformationsupport/financialmatters/ (they deal w/ lots of blood cancers, not just L & L).

If you need some hope, just look at Robin Roberts on Good Morning America. She is doing fabulous after her transplant for MDS!!!

Lmcqueen

strait lover,

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