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Got my Itinerary for the pre-transplant testing

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Can we say WAY too much?? Good Grief.

12th at the Hospital
10:15 EKG
10:30 Echo/Resting
11:30 Panorex X-Ray
12:00 Chest X-Ray
1:00 Apheresis Education
2:00 Pulmonary Function Tests

13th at the Outpatient Clinic
8:30 Labs
8:50 Health & Physical
9:30 Evaluation Financial Workup
10:00 Evaluation Psych Workup
11:00 Bone Marrow Biopsy
12:30 Evaluation Social Service Workup
1:30 Teaching and Education (need caregiver to come)

16th
Pet Scan and Dr appt with my ONC.

19th At Outpatient Clinic
11:00 Consent appointment
12:30 Evaluation with Nutritional Workup

20th at the Hospital
8:00 Trifusion Placement (catheter)

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Beth,

You sure have a big plate of stuff coming up. How are you doing with it? I would think that seeing it on paper, makes it more real. Of course it's real already, but just more so.

I was thinking about you all weekend and hoping that you were able to rest with comfort. Will your hubby be your caregiver or do you need another person for that job.

I wish we all lived closer to each other so we could give each other hugs..

Hoping the rest of your week is smooth. (((hugs)))

Peaceful healing
Lisha

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Lisha,
This may be a little off the subject but here goes. We have become a close family on here over time and I am glad we have. Do we realize how wide spread this disease really is. We probably have people living very close to us suffering from the same disease and do not even know it. They do not know about CSN and I don't know how to spread the word. Most people on here found this site by accident like myself. We were scrambling around searching the web for answers and stumbled on this site. I tell people about it at the center when I go,but I do not know if they check it out or not. You know the old saying."You can lead a horse to water ,but you can not make him drink". In the meantime we have each other to share our selves with. John(FNHL-1-4A-5/10)

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

With this RICE hitting me so damn hard this weekend, getting this in the mail today just completely & successfully scared the hell out of me. I do want to break down and just cry. I'm scared, tired, overwhelmed and frustrated.

I did cry and let out a few healthy expletives when I saw the BMB because I know they are not going to put me out. That whole thought freaks me out. The humorous part of that is they are having me do the psych evaluation right before that LOL.

Today has been the first day since Friday that I got dressed with bra, jeans and socks! My hubby was amazed. Still didn't do much. Although I did ask my neighbor to come over and help me do some weeding of my flower beds. We didn't get it all done before my energy died, but it does look somewhat better. It makes me sad knowing that I won't be able to do anything with it for the rest of the summer.

All of this is so hard. I don't know where the strength is going to come from to get through this. As far as the caregiver goes, we are going to have to depend on multiple people. I'll have to have someone with me 24/7 for a month. My sister is retired thank god and is going to come up for as long as I need her. Course we haven't been in the same household for any length of time in MANY years and I am a little worried about that too. LOL.

Bottom line? I am terrified. How are you doing with all your stuff Lisha?

miss maggie
Posts: 929
Joined: Mar 2010

Dear Beth,

I am overwelmed reading all your posts about the up and coming tests. I am so saddened to read about all your tears. I wish I could take you in my arms and give you lots of hugs.
You want to know something, I would be frightened also, and scared. And the tears would flow often. Please try and not think of what's ahead. Easier said than done. Take one day at a time. You will get through this. Just maybe, and I say maybe, not as bad as you anticipate.

As far as the BMB, I promised myself, if ever I need to have that procedure done again, I will be fully medicated. I am pasting part of a post from long ago that I saved to my computer. Here it is: MAKE sure with bone marrow biopsies you have Vercet given - you have no memory or pain - wouldn't think of doing without that. I would also ask the doctor to give you a prescription for Valium to take before the procedure.

Sending my love and prayers. Love Maggie

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

They did say something about giving me ativan and a pain lollipop. I'll have to ask what kind of lollipop LOL.

My onc already does give me zanax but I want to be able to pass the psych eval LOL.

I am really doing pretty well when I feel good, it's when I get tired that I start getting weepy and overwhelmed.

I try not to read too much into it, but it's hard not to.

Catching all the prayers and love!!

Beth

Michele23
Posts: 168
Joined: Mar 2011

Hi Beth,Yep looks like your going to be pretty darn busy.Good Luck!!!Sending you a truckload of well wishes.Take good care,Michele DX95 FNHL3

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi sweetie,
Dang...thats one heck of a schedule! Of course you are scared and with good reason to be! I wish I could do more for you than typing words in a comment, but alas...it is, what it is. But believe me dear friend ,you are in my thoughts and prayers, every single day. I've printed your schedule out and will keep it close at hand to remind me where you are at with this new journey ahead of you. Donna, Leslie and you are at the top of my prayer list each day, and of course the others here are added in as I have my daily chat with God. Chin up sweetie, but when it starts to quiver and you feel lost and scared, come here to your family for love and support. All of our hearts and prayers will be flowing your way.....Much love to you...Sue (FNHL-2-3A-6/10)

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I may not type this correct as I am now in tears. You are so sweet sue and you're right my chin is quivering, but I just keep trying to remember the carrot dangling at the end of the rope...50% chance of cure.

50%, 50%, 50%, 50%

Don't they say to repeat three times to remember, so maybe the extra one will be heard?

Dammit, the more I cry, I wipe my eyes and the eyelashes are almost gone. You guys should see me, I am such a fright to look at. I am smooth bald with the exception of a little circle of 1/8" stubble on the crown of my head, and now almost eyelashless.

I look like Uncle Fester.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Beth,
There is nothing I can add to all everyone has said. Just can't get the image of Uncle Fester out of my mind. The Addams Family was on just the other night. It is all temporary and it will all grow back. I lost most of my hair when I was on R-cvp,but not all of it. The nurse said it would grow back,but no gaurantees how it would grow back. Kept imagining a purple afro with a racing strip down the middle.That agenda they have for you looks like a theatre play schedule. Hang in there. We are all there with you. John(FNHL-1-4A-5/10)

She514's picture
She514
Posts: 47
Joined: Mar 2011

I am so sorry you have to go through all this. Though I have not had a BMB I hear the key component is to not sit down afterwards. Keep walking...since you have scheduled appointments afterwards moving about helps. I'll keep you in my prayers! Hugs to you!

Rosie

CountryGal7557
Posts: 165
Joined: Feb 2011

Reading all the loving comments posted here must give you a lift! just keep coming back to this site for more love and prayers when you're blue....one hour, one day at a time...and you'll make it!!

Love
Janelle

truckingalong
Posts: 444
Joined: Aug 2010

Beth, you are going through so much and I am with ya. I ve been there - I still look at myself in the mirror and said "geez, I still look like a cancer patient" then think of the aliens out in the universe looking like us. LOL!
Sending my positive thoughts.
Hugs,
Liz

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Beth,

I've looked at your schedule each day since you've posted it. Each time, I think that' either it's going to change or that I'll finally be able to look at it and not experience disbelief! I've been wanting to offer you some words that are wise and supportive.....I keep coming back with nothing except, Holy Cow, who thought this up? It's so much to take in.

Good luck to you Doll! I will continue to pray for you. Please let us know how you are as you go through your very intense pre-transplant schedule.

Big Hugs to you, Kellie

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Yeah Kellie I keep thinking it's going to change too. I already get tired, I am afraid I am going to fall asleep during one of these things.

I know they also said to bring a lunch...when they going to give me time to eat it?

I just really want to get this done.
Beth

Lymphomaniac
Posts: 4
Joined: May 2011

Hey i read your schedule. I did all those things in March and April, and unfortunately for me my transplant was cancelled the very day it was supposed to start. my xray ad ct scan showed that my masses grew during the pre chemo they give you before a sct. just take it one day at a time! you will get through it so quickly and be amazed!

I still have my catheter in my chest because theyre waiting for a stem cell donor to be found for me. Its a little bit of a pain having it, but you will get used to it. I just wanted to suggest that you air it out often! the dressings they use are really good and keep it nice and clean, but after having mine in for a month the skin got sooooo infected, it was like a severe burn. so just make sure you let it breath between dressing changes!

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Oh Beth,
What a schedule!!! They are crossing all the t's and dotting all the i's. When is the actual procedure? We will miss talking to you for awhile but trust me there will be a whole bunch of prayers coming from this group of people. You are a very special person and have many people's love and respect.

skuttlebug
Posts: 45
Joined: May 2011

beth it makes me tired just reading about it blessings and prayers denise

skuttlebug
Posts: 45
Joined: May 2011

beth it makes me tired just reading about it blessings and prayers denise

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