Stem Cell Transplant ( Sct )

[intothelight]

Read some blogs on a Myeloma website. Hoping to find some positives and those I did. But I also read about a lot of pain and suffering, which is not so different than I read here. Also read about some deaths battles and much hope.

In my brain I feel guilty for seeming to be going through this as well as I am. Also afraid as the transplant has been a source of the death of a few. There are times I doubt my own decisions, but second guessing is human nature and I need to cut myself some slack.

Another way of looking at this is I am grateful for how things are going. Also so shocked at what I read about stress and the relationship to this particular type of cancer. But stress is a part of life and my greatest short fall is how I handle it. I have to learn to handle it better, because as long as you live, stress is a part of life.

Feeling confused today, doubting, and wishing I could really share my thoughts and concerns. Just not sure who I should share them with.

 

[The Albatross]

I had to smile about the happy face thing. When I was in a hard hat construction area I had a big smiley face on the top of my helmet. That way, I was easily identifiable from the upper floors and my husband could find me... and it cracked other subcontractors up.

Journal your thoughts and concerns offline if no one is in your sphere to share with? Someone may appear.

 

[Froggie]

If the girls do that Happy Face, ask them to take a picture :p so that you can share it with us :p:inlove:

So the operation is on the 17th and not on the 26th ? Got that changed on my calendar.

Will be alongside you through all that! :hug:

 

[Deleted member 12723]

Hugs and prayers for you and yours. I am with you in spirit. That is the best I can do. I will light a candle for you. Hugs.

 

[Lady of Longbourn]

:hug::hug::hug:

 

[Whitneys story]

Deb, Music and laughter are excellent medicine. Let's start a rock group The Tudes. Love your's and keep on keepin on!

 

[Tinyflame]

(((((Sweet Deb xoxoxox)))))). :hug: !

 

[intothelight]

Only two more weekends at home. So many second thoughts and a lot of fear. Thing is I am starting to feel so much better after the collection process. That whole process flattened me for a period mentally and physically. That experience has made me a lot more apprehensive about this procedure than I was.

 

[The Albatross]

Bulk up if you can, some body weight and muscle mass... super nutritional foods. Hydrate and try to steer clear of things that will depress your physical body. Maybe some visualizations for stress reduction? Sometimes I do one that has me warming up and training for a major athletic event... like pole vaulting. Once I'm in the air, gravity and momentum does the rest... and the only thing I have to focus on is how I land on the mat. (???)

 

[intothelight]

Alba, that is the problem, as I have had enough steroid/chemo combos, I know how I land on the mat. I miss the mat entirely and face plant on the floor. No matter how hard I have tried to prepare, the outcome is the same. I actually did a couple rounds of chemo during the second treatment without any steroids. This time, that won't be an option.

It is hard to explain how mentally altered I become. It is also even more frustrating because I know I get that way and can't even seem to figure out how to prevent it. Even if I am functioning, my mental state is so fragile and my thinking is all screwed up. It is nothing but full blown PTSD mode and I hate the fact I have to ride it out until the drugs are out of my body.

I would rather have ten bone marrow biopsies done in a row than have the steroids. Physical pain I can handle, because I don't remember it. It is something that is endured for a short period, then it is over and I cannot recall it. Unfortunately, I can fully recall how I feel/felt during a PTSD episode and that is a thousand times harder to deal with than any medical procedure they can throw at me.

There is also the issue of the humiliation I feel after one of these episodes. Not that anyone humiliate me, but I feel humiliated by my own lack of control. Fortunately most of my medical team knows me well enough to know that I am a perfectly normal, rational and fairly balanced person most of the time. Even they are shocked by the change and at times are totally lost and afraid of my reactions. I like they were honest in their admission that they were dealing with something they knew very little about; but it also leaves me feeling a little vulnerable as I know these are uncharted waters for all of us.

So in all honesty, that is the biggest fear. Not that I will have the PTSD reaction, but how severe will it be and how long will it last. That is why I have such a hard time relating to other cancer support groups. Most people fear infection from having no immune system. Me, I am most afraid of what kind of mental reaction I will have. How do I relate that? I can't, because you have to have PTSD to understand the fear of a complete uncontrolled mental break.

So I have the psychiatrist, therapist and social worker. But I have really just instructed them all to "drug my ass". I am serious about this as the drugs really do take away my ability to control the reactions and quite frankly, I think the only answer are equally strong drugs to counteract the effect. This coming from a woman who hates taking medication and likes to be able to control her own reactions is one hell of an admission.

It is also hard to say the physical side effects of cancer treatment are a cake walk compared to the mental side effects. So much of medicine is focused on controlling the physical effects of treatment, there is a big gap in controlling the mental. So everyone is learning along with me. I hope when this is over, they have learned a lot. I hope that I have learned a lot and will be able to share with others.

Most of all, I hope people see that patients with psychiatric disorders should be treated with the same concern and respect, as those with other physical complications that are taken into consideration during treatment. It isn't all "just in our heads" and it is a real condition that impacts the quality of a person's life. People are mind, body and emotion. To effective heal, all have to be treated and healed.

OK, getting off the soap box now.

 

[The Albatross]

Glad you got that out. :tup: :hug:

 

[Nicolette]

Thinking of you Deb. :hug: