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jazzmom
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| Joined: | Wed Jul 9th, 2008 |
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| Posts: | 15 |
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Posted: Tue Apr 28th, 2009 11:37 pm |
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 IT is time for 100 day post transplant appt. Testing, (bone marrow, blood, urine, bone survey) are all complete. Now the trip to salt lake city next week to find out if it was all worth it?
On the outward, it is questionable. Mom still has a forlorn look and feels like she is not really here. She still doesn't care about eating much and has been giving things away as they don't mean anything to her. Her preliminary blood work looks good except for beta 2 at 4.6. She just lacks any energy for life and is so fragile in appearance and stature. This from a former feisty blonde bomshell (At least that's what her friends all called her). This mom of today is very unfamiliar to me. Perhaps I expect too much too soon, but I would like to see a glimmer of light in her eyes. Don't get me wrong, I am not giving up, I am just a little tired though I will not quit fighting with her or for her.
We will be celebrating her 64th birthday in July. Our doctor does not feel she can tollerate a second transplant as this one has been too hard on her. Has the beast returned in spite of the transplant? I only hope we know what to do now as far as maintenance, or no maintenance. She didn't handle the dex before transplant very well. The doctors at Salt Lake LDS are taking it case by case. We will see. I do know after talking to many patients while living in the hospital with mom during the transplant and visiting the Huntsman center, that Salt Lake is a good place to be treated for Myeloma. By the way, mom was part of the Huntsman PLCO cancer study for several years before dx with MM. How ironic, she was in one cancer study while suffering from a different type of cancer. anyway, thanks for this forum. We all need each other whether we have MM or take care of someone with it. STAY STRONG.
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dpcaregiver
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| Joined: | Sun Dec 21st, 2008 |
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| Posts: | 33 |
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Posted: Wed Apr 29th, 2009 01:04 am |
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Jazzmom:
My husband (62) is going into his 2nd transplant next week. He had his first on 2/24. he is still very fatigued and gets quite discouraged about no energy. We drove to Napa Valley for a long week-end and the difference in his attitude was amazing. Getting away from home and thinking about his illness made a huge difference. We almost forgot he was sick. Yes, he was still fatigued easily, but he ate better, slept better and we didn't even 'talk' about MM. Perhaps you can get your mom "out" somewhere, even if only to a play or something to help take her mid off things. It's very difficult to not get depressed with this crappy disease. My husband is a patient at Huntsman and with luck, he will be undergoing his 2nd tranplant the first week of May. We live within an hour of Salt Lake. I'd love to meet you in person and, if possible we could "do lunch" just to talk care taker to care taker if you are interested. There is absolutely NO WAY I could have gotten through this far without the help of other patients and care givers going through the same thing. No one understands unless they are there with you! Let me know if you are interested, or we can jsut talk on the phone if you prefer.
dpcaregiver
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destiny
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| Joined: | Fri Apr 24th, 2009 |
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Posted: Fri May 1st, 2009 06:12 pm |
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I know that as someone who has myeloma but has not yet had treatment i have gone through this phase of giving things away because they really lose there meaning when you face an illness such as this, it doesnt really mean she is giving up but the mind just seems to go through this "getting ones house in order" thing.
I have done this just from the awful lethargic, tired leave me alone feeling i get. I know that it is hard on the ones who care for us and on our good days we really do try to be with life and enjoy it, and also we are told from our caregivers and nurses and insurance people and doctors what to do , when to do it, how to do it that we feel as though in some ways these stupid or silly things we do is trying to gain back some of our control. It is HARD to be dependent on people and we worry about the effect it has on our loved ones. Just hang in there sweetie and she will find her way. Maybe a 2nd transplant wont be the answer and maybe it will.
The myeloma always as i understand comes back because they can never completely kill all the cells let your mom be what she needs to be and how she needs to be and support her and love her as i am certain you do.
dest
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