PARASAILING WAS FUN!!!

I WONDER WHAT'S NEXT? ZIP LINING MAYBE???



Friday, June 19, 2009

I'm learning a lot

I'll probably have these updates fairly often over the summer. It helps me to write about John's cancer treatment.

It was really hard, being at work all day and not being with John while he went through his first day of R-ICE, the treatment he's getting for his Lymphoma. The best I could do was text him from time to time to ask how he was.

They started his first batch of drugs around midnight, with Rituxan. When John went through chemo 2 years ago, the Rituxan gave him really really bad chills. He said he was colder than when he was stationed in Alaska and living outdoors for 2 weeks a year in -50 degrees! They told him to expect this and they made adjustments and from that day on he didn't have that reaction. They call it "Infusion Reaction" aka a severe allergic reaction to the drug (sort of). Benadryl taken beforehand helps ward this and other reactions off.

This time around, John got terribly itchy. They gave him Benadryl or a similar drug and the itching subsided. Side effect from the Benadryl??? He falls asleep and snores really really loud!!!!! I did warn the nurses. :)

They are also giving him a drug called Mesna to help protect his bladder and other parts. With the drugs they give him to ward off different side effect of the chemo drugs, he's had a fairly easy time of it today.

John's also getting some kind of steroid which makes his blood sugar skyrocket and also Zofran, to fight off nausea. I'm not even sure what other drugs he's getting!!!

The doctor did tell him that any adverse reactions will probably come as he's finishing up his treatment this week. I did find out he has to wear a mask if he's around any crowds, especially after they do the stem cell harvest and while they are doing the transplant.

Today John was given a packet that describes a Neutropenic diet
This is the actual packet he was given (now I don't have to ask anyone for a copy!) John's immune system will be severely compromised and he has to take great care not to get infections and bacteria that could possibly kill him! He's not allowed to eat some of the foods that we just take for granted are ok to eat.

For instance, no fresh fruits or vegetables unless they are cooked. No raw fruits, vegetables, nuts. He can't have any ice cream, water ice, custard from a machine because the dispenser might have bacteria. No yogurt, soft cheeses... only individually wrapped cheeses, like Kraft American singles or mozzarella sticks that are individually wrapped. No deli meat because they might not clean their blades correctly. The link has a whole list of things he can and cannot have. The thing that's gonna kill him is no fast food!!! LOL So, if I get a hankering for Burger King, I have to eat it before I see him!

So, Day 1 went fairly well for him. I hate not being able to be there, not knowing what's happening. I went to every one of John's treatments 2 years ago, but he had a 1 day treatment every 3 weeks and I was able to schedule my day off to coincide with it. Now he's doing 4 day stints and there's no way I can take that kind of time off from work. Fortunately, the next treatment is scheduled for the week I had originally planned to go to the beach, until I cancelled the trip. I kept the vacation time to see what was happening. I'm glad I did! I do get 3 weeks vacation this year and plan to take 1 of the weeks when John comes home after the transplant in September.


On another note, I am completely overwhelmed by the generosity of the people here in this blogging community! Your generosity will help me defray some of the cost of gas, parking, meals I'll need to eat at the hospital. I'm sure there are expenses I haven't even thought of, but this will help tremendously! Thank you, thank you, thank you! And, as I told Braja this evening, I will most certainly, at some point, pay this generosity forward! Damn! I keep getting filled up!

37 comments:

Julia@SometimesLucid said...

I wish all the bst for you and John - may he come out of this treatment quickly and with as little discomfort as possible.

♥ Braja said...

There's always so many little things that eats at our budget; take what's coming your way financially and if you don't need it, then use it on the holiday in September :)
xx

Lilly said...

All the best Joanie - and that food list is interesting. Less raw and more cooked. Just remember he is in the safest hands. Stay well.

Chuck Dilmore said...

thoughts and prayers are with you!

peace & love~
Chuck

darsden said...

I can't get pass the can't eat fresh fruits, I am not a fast fooder but I do love me some fruit and right off the tree! I am going to share this paragragh with my mom I think see can benefit from some of this information.

Blessings and Prayers to you both, hopefully it will all be behind him and you'll both be sitting on the beach with a drink soon.

Mary Ellen said...

I'm so sorry you both have to go through this terrible ordeal, but I'm praying for you and John every day.

Remember to take care of your own health, too!

Jan said...

Joanie, I'm just curious - no ice cream or soft cheeses? Is that because they are unsure of what conditions they was manufactured under? Could he eat homemade ice cream or ricotta?

lisa said...

I have my button posted for you. Sending $$ soon.

We have a 4 yr. old in our school that had stem cell replacement. It's a very grueling process....please make sure you and John are aware of EVERYTHING that needs to be done pre & post procedure.

Cynthia said...

So sorry to hear of your situation, Joanie. I hope that you and your husband feel safe and surrounded by love. <3

Joanie M said...

Jan, he can have ice cream that you buy in the grocery store, but he can't have anything that comes out of a machine because there could be bacteria from not cleaning it properly. I don't know why he can't have the soft cheeses, but he loves American and mozzarella and keep that kind on hand all the time.
John's immune system will be very low and he can't take the chance of picking up any kind of bug or bacteria. This is all very new to me, but I can guarantee, in a few days, I'll know a whole lot more!
John will have to follow this diet for at least 3 months after transplant.
I guess I'm gonna have to get back in the kitchen and start cooking again! I haven't done that for years!!

Wonderful World of Weiners said...

Prayers are being sent. Hang in there. We're all here for you to lean on.

Hallie

Tracy said...

I will send your husband a prayer..
God Bless~

Jim and Garret said...

Stay strong! Make sure YOU stay healthy too - John needs you!

Smooches & a BIG ass hug!

Garret

Daria said...

Joanie there is a lot to learn. I don't know much about the others but Zofran can cause really bad constipation.

Hope John manages things well ... all the best to you two.

Adlibby said...

a neutropenic diet?!! Just when a person needs ice cream the MOST! I'm praying for you and John. Being a caretaker is so hard on the spirit -- be sure to take care of yourself too. Much love to you both!

xoxo
Adlibby

Maureen at IslandRoar said...

My heart goes out to you and John through this. I worked many years with patients getting chemo and know exactly what you're talking about. You must be helping him so much; just remember to take care of yourself.

Irish Gumbo said...

Joanie:
Don't worry about paying it forward...you just focus on John and yourself. You are in my thoughts and prayers.

Peace and blessings to you and John,

Irish Gumbo

only a movie said...

Lots of love and light your way.

Not The Rockefellers said...

Love and prayers to John and you Joanie...

Peace- Rene

Lots of big "you're gonna hafta let go first" kinda hugs too!

Mike Golch said...

you and John are in my prayers,I followed the link that Irish Gumbo had posted for you.

Sprite's Keeper said...

Joanie, big hugs for you and sterile (but warm) wishes for John! Make sure you rest when you can. That's the best way you can take care of him! With so much love surrounding him, he'll probably zoom through treatment!

bernthis said...

You are both in my prayers. You are an amazing couple and I'm sending you big hugs and I'm so glad he's been able to avoid some of those side effects from his last treatment.

LadyFi said...

Stay well! Love to you and John.

Carol said...

I wish you both all the best!!

C x

Janie at Sounding Forth said...

Praying for BOTH of you!! Much love...

Karen said...

I followed a link here from Susan site. I just wanted to wish both you and John the best. Your words are too familiar to me. My mom went through a similar type of chemo a few years ago. When they were harvesting stem cells and transplanting them, she was in isolation in the hospital and we have to wear masks and gowns around her.

I will keep John in my prayers.

dizzblnd said...

I am will continue to keep you in my thoughts and prayers. I can't even begin to imagine the stress. But it seems you are able to keep a sense of humor and that is important! We have all seen through Braja how well this works!

blognut said...

I'm sending all good thoughts your way - good luck to you and John.

Ann's Rants said...

Wishing you all strength.

I'm so glad you are feeling the love surrounding you.

xo
Ann

The Good Cook said...

Joanie,

Find out if he can have homemade mozzarella - made from homogenized, pasturized mild from the grocery store. If he can, I can send you the recipe and the enzyme to make it. It only takes 30 minutes and it is delicious!

Alix said...

Joanie, my girl, the whole of our great and wonderful Blogosphere is present and behind you and John!

Our loving thoughts, hopes, and prayers continue to be with you both. You just keep being strong and supporting each other and we will be here as backup.

We love you, and we are here for you. Email me at AAHice@aol.com if there is anything (and I mean anything) I can do to help.

I love you honey. Stay strong!

Captain Dumbass said...

No fast food?! Poor John.

This DVM's Wife's Life said...

I found your blog through Lady Fi. Be strong! I hope he comes through this and is feeling well soon. So many blogging friends praying for you!

musingwoman said...

Hugs to you both!

Joanie M said...

Thanks everyone! I snuck out to Burger King to get online (John doesn't have internet access at his apartment ... grrrr.... he's alseep now. And for the record, all I bought was a diet coke! I just finshed up with dinner. heheheh
When I get home tonight, I'll post a more detailed account how the weekend went. He's ok but limp as a wet dishrag.

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