Bone Marrow Transplant Support Group

Hi Everyone, This is Sibyl,

Support groups can every once in a while

achieve the level of effectiveness we hope for.

Such is the case of the Kansas University BMT

group meeting Stephi and I just attended.

Usually things start off slow in this type

meeting, but right away one of the more 

outgoing members of the group, a wonderful

fifty year old woman who is battling lymphoma

for a second time, took the lead.  She started the

conversation with her report on "trigger finger"

osteoporosis and how what used to be the lives

of the bone marrow transplant survivors can 

never be again.  She said they all have to get 

adjusted to the "New Normal".  In the 

New Normal life, balance is really tricky--and she 

went on, that statement applies on several levels.  

Balancing the needs of treatment with the duties 

of life, actual physical balance which is

compromised by drugs and the extreme fatigue that 

is the reality of the survivors. "People are surprised

and often critical that we cannot get out of bed even 

two years after transplant. but when we try to do 

what we did before, we hurt ourselves.  That is,

 if we can even muster up the strength to try."

Stress and Fatigue adversely affect the blood counts.  

We learn to manage the fatigue by limiting our 

obligations and revising our lifestyles.

There were several visiting Occupational 

therapists visiting the meeting.  They wanted to 

assess how they can assist BMT survivors.  They 

acknowledged that exercise is helpful to all patients 

however the range of types of exercise and the level 

and time of the activities will very widely among 

patients ..largely depending on the patterns of 

exercise they followed before their diagnosis.  

A good conversation followed about milder

forms of exercising in bed, or in wheelchairs 

would be helpful.  All were upset that they are 

severely restricted in using swimming pools.  

Water exercises are so much easier and still

very effective, but when autoimmunity is 

compromised, the pool is the first thing 

restricted. (Stephi is not to be

in a pool for another six months.)

There was a lengthy discussion on "avascular necrosis"

that is caused by Steroids.  "AN" increases the need 

for hip and knee replacements.

I (Sibyl), was surprised by a complaint the lead woman 

had.  She was recently told she had re-entered remission

(remission happens more readily in lymphoma than it 

ever soes in multiple myeloma).  She said she does not 

welcome nor appreciate the remark made to her:

 "You look great.  Isn't it wonderful to be

 in remission?" She and most of the other members of 

the group agreed that this was a subtle pressure on them.

Just as they are beginning to accept that they must adjust 

to a "New Normal", family and friends seem to expect 

them to return to their old lives and former selves.  

The Nurse Social Worker Facilitator validated the 

conversation "This just does not happen in the

first couple of years after BMT.  We are not

just chemo survivors, but BMTsurvivors, as well.  

The stuffing has been knocked out of us. Often,

there is not enough energy to even go for help.

It takes everything we have got to get up, bathe

and eat. We can hardly take care of ourselves.

There is nothing left over for anyone else."

The conversation then moved around to Nutrition.

Everyone was admonished to buy only flash frozen 

vegetables and fruit unless the fresh vegetables

and fruits were locally grown.  80% of the 

nutrients are lost in transportation of fresh 

produce.

Stephi loves this meeting and has begun to 

build solid friendships with several of the 

women and men.  They were exchanging 

telephone numbers and making appointments 

to talk with each other over the next few days.

Although she still does not participate very much

on the speaking end during the meeting, after

the meeting she opens up with the gals who 

hang around.  This is so good for her.  In particular,

The pain management  and FATIGUE discussions 

held her attention because these plague her.

Pain management was the biggest challenge 

for the group.  A man who is on his 4th BMT 

said "I can only make last minute, almost 

spontaneous holiday plans because I cannot 

predict my energy, pain level and how my

immune system is working until the event 

is right up upon me.  I have had to go from being 

independent to asking for and accepting help.  

It has been humbling."

As my shoulder surgery should be scheduled in

the next few weeks, Stephi will need a companion

at the next meeting of the Support Group.  If you 

would like to learn more about the process and

meet some inspiring people, please let Stephi know.

She would love the pleasure of your company.

Love,

Sib