Good morning from Madame DuBois...

[madubois63]

So on my last update, my liver function had gotten better without any treatment, but the big drop happened after I was pre-medicated for 2 days with prednisone for my allergy to CAT scan dye. My bilirubin had dropped from 9 to 2. The doc canceled the liver biopsy and I felt like my care had been dropped. I had also caught that miserable upper respiratory infection, so that kind of put things on hold too. Anyway...the bilirubin climbed again - last call it was at 10. So last week, I had a liver biopsy (no results yet) and had my fourth port-a-cath placed. My poor arm is very happy now! On Friday, the leukemia doc said they would admit me to the hospital on tuesday and start very high dose steroids for six days. Has to be IV because pills would ulcerate my stomach.

Okay, so here's my dilema...every time I go in the hospital, I get sicker. CMV will reacivate in my blood. More medications will be added. I'll pick up some funky bacteria as always. They'll add a broad spectum of antifungal and antibacterial...I'll get the stomach problems and won't eat the horrible hospital food or the unindation of take out. One week of supposed treatment for a somewhat healthy me right now will become several weeks of hospital stay that will just make me sicker. If I just take a dose of steroid pills like I was doing a few months ago aat home eating my own food and surrounded by my own life/germs, I believe this will fix the problem and keep me healthier. I want to ask for 7 - 10 days of at home steroids and if it doesn't work, then I am open to a hospital stay.

Any input or thoughts???? Thanks everyone!!!!!

[Becky]

What about a visiting nurse and still get the IV steroids that way?

[dhealey]

I would go for your plan, nobody knows your body better than you do. I like Becky's idea also with a home health nurse. Good luck.

[IRENE FROM TAMPA]

Madame -

but the stay home idea with a nurse sounds much better then in hospital if you dont have to.

Good luck honey and get better.

[Yorkiegirl]

AWWWW Mary Ann if it's not one thing it's another. I agree I like your plan as well. I also agree with Becky that maybe a visiting a nurse to give you the IV steriods.

[madubois63]

The home nurse is a great idea except my insurance does not cover it. Had this problem after the transplant. I can give the IV steroids to myself (expert at the pump), but it's twice a day (every 12 hours), and I know they wouldn't go for it. They are talking huge amounts of steroids, but I had a dramatic drop after a day of a small dose of pill form prednisone. I was on 140 mg over the fall/winter (cleaned everything) and did fine with that. I just know the hospital will make me sicker. I figure after 5 weeks of them not doing anything, why not try my way first (less evasive and safer for me). If it doesn't work, then I go thier way????

[PinkGirl]

Hi Madame
I don't know very much about this but .... I once had IV anti-biotics
this way - went to the hospital at 7 am and went back at 7 pm. Is
this possible or is the infusion time really long?

I also want to apologize for misspelling your last name. I didn't know
that it is with a "capital B".

Good luck with these decisions Madame DuBois. I know you will get it all worked out - you always do!

[hutchibk]

Go with your gut, Marianne! Stay at home. Get a home nurse, that is a great idea. Tell the docs you want to do it your way first and if that doesn't work, then convince them you want a quarantined room!! Stay well.

[ElaineM]

Hi,
A visiting nurse or home health aide sounds like your best choice. Nobody wants to get sicker in the hospital.
Is there another nearby facility you can go to instead of the hospital that causes you more problems.
Good luck. I hope you get better.

[Bill]

Hi Madame DuBois! It's good to hear from you. I'm sorry about the trouble you've been having. It sounds to me like you have a good plan. You do know your own body better than anyone else, and eating your own food is so much healthier for you.

[Mary Anne in TX]

Can they do it at the treatment center where you always got chemo?

[harrie]

Maryann,
Instead of being admitted into the hospital for the IV treatment, would it be possible to have it administered at your oncology center as an out-pt?
Maryanne

[harrie]

OOOppps, I just noticed Mary Anne in TX just said the same thing as me...
Us Maryannes must all think alike.....
High 5's for all the Maryannes and that means you too ms madubois63!!!
Take care Princess.....

[Joan M]

Maryanne,

Of course staying at home would be the best option but getting someone to come in is a dilemma.

Can you talk to a social worker where you have chemo? Someone on the oncology side? They can sometimes direct you to the right resource and help to make arrangements.

We have this at the Nalitt, which is part of North Shore LIJ. I know from other bc patients that the social worker there has helped them in different situations.

Joan

[madubois63]

Thanks for all the input. I am going to try and clarify a few details and maybe you can get a clearer picture. I CAN'T have a visiting nurse come in. My insurance does not pay for it. The IV steroids would be given 12 hours apart twice a day. They wouldn't do this at my cancer center where I get all other treatments because of time constraints. They are not going to open up just for me. They'd rather have me in the hospital so that they can test for anti fungal, anti virus and anti bacterial critters that you KNOW I'm going to pick up once I step foot in that place. Because of the transplant, my rooms are ALWAYS private. The problem is the cleaning crew. Next time your in or visiting, watch...see how many times they change their gloves after scrubbing the toilet and the shower. Then watch every light switch and door knob they touch before they come in with the bucket of "clean water" and scrub your floor. As soon as they leave, I put a mask on, put new gloves and clean my own room. Then I refuse them from entering my room for several days. I change my own sheets and pray. I always end up sicker there. Its a fact! I just don't feel like going in the hospital today!!! I haven't got a call yet, so I guess I'll be the brave one and make the call....I'll keep you informed.
Thanks again!!!

[Ruth]

Maryann,

I feel that you know your body better than anyone else however I feel that the concern about the amount of liver bilirubin elevation is concerning to your Dr.'s...and they want to take care of this because this exists now versus what can happen later...ya know? Few doctors are known to take a proactive stance on future complications...they want to take care of what exists right now and treat that. I wish they could send someone to your house! I can see their point and yours. I know whatever you decide you will be strong as you always are.

Take care ~ Ruth

[Ruth]

OK...no more wishing someone can come to your house! :-)

[abitjaded]

Maryann,

How long does it take to administer the steroids? Over how many days? How many blood draws?

My mom had years of home health care. To pay an RN it is $20 hour and up. (CNA and LPN are cheaper) An RN could do the IV and blood draws from port or whatever. Parse out the cost and see if it is doable. Contact the Onc Social Worker and see if there is one of the chemo nurses or someone who does private duty.

Go to the top of your Insurance pecking order. Surely someone would recognize the fact that they could save money! Ha, just wishful thinking.

Do you have any angel friends who could mop down the room for you?

Have you had big dose steroids before? Made me batty. I would not want to be alone on them.

Carla

[madubois63]

The six days and nights of continuous steroids are now off the table - thank God, as is the hospital stay. The liver biopsy came back with mixed results. There is a small amount of graft versus host disease (which i have been saying for five weeks) and a build up of iron (from too many blood transfusions - over 50). Tomorrow, I am scheduled to go to the clinic an have a pint of blood removed and I'll receive a shot of epogen to help move the other trapped iron in my system around. I will also start high dose steroids (pill form taken at home) YEAH!!! I will have to start to watch my sugar levels again and take insulin if necessary. Small price to pay for being healthy. I will get to my daughter's award ceremony tomorrow night and when she gets inducted into the Natl Honor Society next week - I am happy!! I'll keep you informed as to how it's going. I am very happy I spoke up and got a bit of a compromise!!! I feel much better about this treatment...

[abitjaded]

Oh, yeah!!!!!

How old is your daughter?

I have two boys, 11 and 14. Never got into Nat'l Honor Society. But there is still hope.

Carla

[BonnieR]

I am so happy for you AND your daughter! How wonderful that you will be able to share those special events with her.

[lexigirl]

Great news MaryAnn!! I am happy that you were heard and that a compromise was made. I really believe that you will be healthy and well again very soon!

How terrific about your daughter!! How proud you must be. I am proud for her too!!

Hugs,
Lexi

[Ruth]

Yeah MaryAnn!

You know your body sister! I am so glad you can do this at home and be with your family.

How proud you must be of your daughter! Have fun!

Ruth

[madubois63]

Carla - My daughter just turned 17. Since she was 14, I've taken her to over 100 concerts (sometimes as sick as a dog). Everyone thinks I'm nuts, BUT I've always known what she was doing or not doing, who she was hanging out with, we have a common interest and make fun drives along the way leaving room to discuss serious stuff if need be and she knows the rules....if her grades fall, the concerts stop! She's been on the Principal's Honor List ever since. She gets awards in French, chemistry and art and does community service through the art club. She'll be taking Advance Placement English next year for college credits. I could not be prouder of my two wonderful kids!!! My son just finished his first year of college with a GPA of 3.96 and he started his first job working in the local supermarket deli. He pays for his gas and car insurance and is always looking to help me out anyway he can. He opted to stay close to home for two years because of the leukemia. But next year he will go off to a bigger school that has offered him a great scholarship! My kids were 9 and 11 when this all started and I never thought I'd get this far. Thanks for the opportunity to brag!!!

[StephN]

Dear Madame -
NO ONE deserves bragging rights more than you!

It is a tough go to bring up teenagers when a person is not fighting cancer on a constant basis. You have done the nearly impossible. But, your sacrifices to stay close to them and monitor them has paid off and will continue to pay off as they make their way in to the world at large.

I waited to reply to see how the liver biopsy would play out. Knew there could be changes based on that result. And I am THANKING the Good Lord that you do not have to go back into the hospital for now (or hopefully EVER!).

I used to take the wipes and go over things in my Dad's hospital or care facilty every time I visited. Was hoping to cut down on the spread of the staph germs. My sister did that for me when I had my head surgeries. Keep on wiping everything down. Glad to see that people are now using the wipes provided for the grocery carts now. I used to feel I was the only one ...

[madubois63]

Hi Steph!!!! I've been wiping everything down for a long time now and everyone still thinks I'm nuts. After watching the cleaning crew scrub my toilet then clean my shower with the same pair of gloves on and one other horrible experience, I've never been the same about hospital cleanliness. I've never had any of those fungal and bacterial things until I go in to the hospital. My luck, I'll pick up MRSA. As clean as the transplant ward is, it's not my home. I am very happy to have sort of gotten my way!!!

Thanks for all the great advise!!!! I am sure I will be back to my old seld real soon. Love to you all....

[StephN]

Well, YES. I remember you practically had our hotel room in San Diego fumigated by the time I got there!
Appreciated your thoroughness.

As you may have noticed when we roomed together, I don't like to put my things down on the counters, dressers, etc. Just take them out of my own carriers then put them back after using whatever it is. My toiletries and underwear bags get "the treatment" when I get home. And most of my clothes stayed either on hangers or in my suitcase. Don't know WHO used those drawers last ...

Maybe that is overdoing it, but I am 1/4 Norwegian!

Just do what you have to do, and use plenty of bleach solution in a spray bottle.

[Bill]

Madame DuBois, you are an amazing woman! You have raised two wonderful children in spite of everything going on in your life. You need to brag every chance you get, you don't need an excuse. I'm so glad that things are working out better for you. Love ya! Bill

[Mary Jo]

Dear Maryann,
After reading your awesome post on your AWESOME children the first thing that came to my mind was this.............

TRULY YOU'VE BEEN BLESSED! I KNOW you know that!!

Gentle hugs.....

MJ

[Joan M]

Maryann, Keep on truckin... Joan

[Soccermom]

Maryanne,
you are TRULY a WONDER!
Much love,Marcia

[abitjaded]

Dear Maryann,

Wow so many concerts! My kids sing in choirs and I can remember sitting in a few performances when it was a hard effort to be there.

You must be so proud. Our kids really can step up. They bounce, even as we crash.

Each of my boys changed scools in September. The older went from the easiest MS in the district to the hardest, largest, most chi-chi High School. They put him in a couple accelerated classes and he strugled mightily. Nothing to do with what was going on with me. He eventually had to drop down to straight college prep. A real blow to his ego. Plus he still has not managed to talk to a girl.

My younger one went from his easy Elementary to the magnet school for all the over-achievers in the district. He is supposed to be a Middle Schooler in 5th grade. Responsible for keeping track of his work. Like that happened! He goes from A to F if he just does not bother to do his work.

I was O.K. keeping up with them at first, but the last couple months my husband has saved each kid from some serious Cs and Fs. Bless him.

I want more than anything to be there for graduations. You show me it is possible.

Thank you,
Carla

[madubois63]

Aww - thanks everyone!! I am very proud!!!

Carla - You WILL be there. I don't know if you know the story of my son's graduation??? Last June, my liver decided to reject my bone marrow transplant (seems to be a yearly event). I turned an awful color of green and my eyes literally glowed yellow. I haven't been that bad this year, but close. Anyway, I was in and out of the hospital...test after test, biopsy after biopsy. I checked myself out of the hospital the day before his graduation. I got to the ceremony a little late. The principal looked at me all glowing and got a folding chair, placed it on the field where the graduates were and sat me down as close to the event as possible. We had our lobster dinner and little party afterward. I woke up and drove back to the hospital the next morning where I stayed for two weeks of treatment. The docs knew there was NO way they were going to keep me in the hospital that day!!! Where there is a will, there is a way. I have every bit of faith in you sweetie!!!!

[madubois63]

An update to my treatment...Today the leaches were let out on me (not literally), but I had unit of blood TAKEN from me for a change. Over 50 transfusions, and now they want blood??? I have an overload of iron and a small degree of graft versus host disease. I will be giving a unit of blood weekly for a while and get a epogen shot to help the red blood cells rejuvenate (it's a shame they can't use they blood). I am also starting steroids in the morning (I am opting to sleep tonight). Tomorrow I will be out for hire cleaning, sorting, scarpbooking...whatever!!! The steroids are amazing! For anyone keeping notes, there is a drug called Ex-Jade that helps people with iron overload from too many transfusions, but it is very toxic to the liver and takes a long time to work (6 months or so). This is not the best option for me, but it is there for others if need be...