Stem Cell Transplant ( Sct )

[Froggie]

So glad to hear you won your appeal and that you have all the information necessary for your SCT. Wow, during the Christmas season, that will be a special experience. We will be all virtually beside you, candles burning, prayers, positive vibes and sending you TLC. :hug:

 

[SweetPeaandSunBird]

Of course, a long list of examples of your determination would be longer than I imagine the Dead Sea Scrolls would be... That being said, the way you've managed to self-care in light of your mother, made me think of a quote: "We need to find the courage to say NO to the things and people that are not serving us if we want to rediscover ourselves and live our lives with authenticity." (Barbara de Angelis) I don't know whether or not you will find yourself able to read during the long recovery, but, just in case, I "made" a bookmark for you. Hope it comes out (without formatting getting wonky) and that you can print it out.

Always thinking about you and sending prayers into the wind for your health.

 

[ClairBear226]

Thinking of you, Deb. Of all the people I know that could be faced with such a huge challenge, you are the one most likely to beat it. It's going to be hard as hell, but look at what life has already thrown at you. You haven't backed down yet, and you won't now. Stay strong, Hon. (((((((((((((HUGS))))))))))))))))

 

[intothelight]

Find myself still waiting for confirmation as to whether I will start the collection process this Wednesday or next Wednesday. Of course the waiting is tied to the insurance company again, as all of the test results had to be sent to their transplant team for approval of the procedure.

The process has to be started on a Wednesday, as that is just how the hospital does it. If it starts next Wednesday, then I go to Thanksgiving dinner with a bag of chemo. Ended up joking about putting construction paper feathers on the back and decorating it like a turkey with another friend of mine that is a cancer survivor. I know it sounds a little twisted, but you have to joke about things like this or they can really take you down.

But regardless of it is this Wednesday or next, I find myself struggling with so many things that I am surprised by. I keep wondering how much of it is "normal" and how much of it is the PTSD. I guess in the end it doesn't matter as they are my struggles and there is no right or wrong. So I am going to write them out here, so when someone reads these and if they can relate, they won't feel so all alone.

On a Wednesday, I will have a Pheresis catheter. I attached an image and it is provided by the Lukemia/Lymphoma Society. To me it is really scary to have something implanted that has a tube going down towards your heart and then to have two ports hanging outside of my body for several months. I find myself worrying about catching it on something; or if the "feeling" of it being under my skin will drive me crazy; or the fact that it can be used for not only the administration of drugs but nutrition makes me feel like I am not in control of my own body. I know that I should not be "obsessing" about the "what ifs" but they are there and to pretend they don't exist is a lie. Part of me thinks that anyone looking at having one of these things stuck into them might be "worried" too.

I have already made up my mind to shave my head the day before the port is inserted so I can donate my hair. I don't want to watch it fall out as a result of the chemo I will be doing as I feel it is just another "waste". To actually be able to make a choice and do something that will benefit someone else feels empowering. One less thing the cancer will take, or at least this time it is being taken on my terms.

But at the same time, for a person to lose their hair is a pretty emotional thing. I can't help but wonder if I will be so repugnant that my husband will not be interested in me, or that my family or friends will be embarrassed by me. I also feel guilty for feeling bad about losing my hair, as that is vain. But there is this huge negative self-worth thing that goes with PTSD that this is tapping into big time. Just another struggle on the PTSD front lines.

Time to put this overactive, worried, and fearful mind on something else. The sun is up and it is going to be beautiful out today. Going to spend the day outdoors, as there will be a time soon, very soon, that I will not be able to do that.

 

[Froggie]

That catheter ressembles what I have and I understand your fear of catching it on something. But you don't ... had that fear for a while at first. I was really nervous the first time I had a mamogram done with it and the technicien had a heck of a time calming me down saying she was used to this ... result - she didn't rip it out and I was nervous for nothing!:oops:

And if you do disguise yourself as a turkey, don't forget the picture for your friends here ...:hilarious::roflmao:

As for your hair, why don't you keep just a short crop on your head, the time to adjust to the loss of all your hair. I did the same thing, sent my hair for cancer patient wigs. It's the least we can do. I wouldn't worry what others would think, I don't think that you will be rejected either. Some women have found themselves pretty with no hair that they kept them short after the chemo was over.

You're one brave cookie !

 

[CraftyCath]

I cannot add any more than Froggie has already said Deb.

I hope you get it done sooner rather than later. Do the turkey thing and laugh as often as you can.

Hugs to you,

Cath. x:hug:

 

[Deleted member 12723]

Thank you for the update Deb. I really appreciate it so much. Laugh or go crazy. Decorate it like a turkey and have some laughs. It is called gallows humor I think. I used to have alot of that when times were really rough for me.

Take really good care of us and remember to breathe when things get too intense. Big hugs.

 

[Deleted member 6617]

This is one friend who will find you beautiful with or without hair. The beauty I see is from the inside out and that cannot be changed by a shaved head. Here for you my friend, through the tough times and laughs. :hug:

 

[intothelight]

Well had my head shaved tonight. Probably a good 12 to 14 inches of hair donated and I hope it does some good. Port goes in tomorrow and chemo on Thursday and Friday. Looks like I will be admitted for this round of chemo, unless I can get approval for home health care.

Want to thank my dear friend PH who gave me some gorgeous scarves. Can't even write what I am feeling now as it is all mixed. It is amazing to have the love of my friends, as there are family members who are creating drama while I am sitting having my head shaved. Unbelievable.

 

[Deleted member 6617]

Your welcome Deb and I just got to say...You look good! The shaved head does not at all take away from your beauty outside or in! Okay...got to say it...you have a good head on your shoulders (in more ways than one) :D

 

[amethist]

Good luck with it all Debbie. Your hair will grow back.

I hope whoever gets your hair this time enjoys wearing it, and it puts a smile on their face.

 

[Nicolette]

Wow, I had to choke back the tears reading this as my heart goes out to you. I cannot imagine what the catheter will be like but can kind of appreciate the apprehension from my heart surgery (while nothing as huge as what you are going to).

I love your ability to find humor to lift your own spirits.

I admire your strength and wish you the least of all possible struggles while you embark on this journey. We are all here supporting you and cheering you on. Good luck. I am in awe of all you have done and will now do. Take care :hug: