for sure they'd be out of range now. They were not, but did rise to 18. 19 is the end of the normal range. The head nurse told me to stop worrying, that a few points over 6 months meant nothing to them. Doc said it was not a problem too. His other numbers all look good and M-spike stayed stable at .15. We are very relieved. His red, white, and platelet counts looked really good and I'm convinced it's because work slowed up and his body has gotten a LONG needed rest. The nurse pulled me into a separate room to tell me that a woman from our support group died, so that did put a definite damper on this appt. She did not want to talk of people dying in front of Tim but mentioned that our office has had a very tough time of
it lately and quite a few patients passed away. This SUCKS to hear, to know, to think about. I appreciate that she did this privately with me and I did not tell Tim, said it was just support group talk. There are 3 docs in this practice now and we've seen all of them and formed relationships with them. The 2 we were not seeing yesterday, stopped what they were doing to visit with us, ask Tim how he was, and catch up a bit.
Everyone there is SO nice. We've formed great relationships with so many people. I realized after we left that these people gravitated to him/us while we were there. One doc stopped in the middle of a dictation when he saw us and came into our room to chat. The other was on his way into another room and stopped to check in. I think it raises these guys' spirits to see Tim. It must be SO hard what they do. Seeing people die. Feeling so helpless, at times. I think it's a shot in the arm for them to see patients doing well and living a fulfilling life.
Tim is definitely a success story to them. We feel very blessed to spend most of his appts. joking with his doctors and we take an interest in THEIR lives too and ask about them and their families. After we were done joking around, Tim got his Zometa infusion and we were off for home. I'm breathing a lot easier now.
So, it's back to the rock pile here. I am pushing myself to do things around the house and catch up. Things I will not mention because I was probably posting about them the last 1 or 2 years and am embaressed to say have not accomplished them. I will have much more time to myself now that Tim and I are not coaching softball. Liv is playing for the high school team, and aside from taking her to pitching lessons and practicing with her at home, we get to sit on the bleachers and take it all in now. Huzzah!
On the family front, the news is still hard. My mom's memory is failing very quickly despite only being 71. SO sad. Just trying to deal with that as best I can. Nothing to be done about it. We still have almost no contact with Tim's family. We took Olivia
to her cousin's college graduation party 2 weeks ago so she could see her cousins and Tim's family. Tim did not even want to go inside. I walked her in and we went home, picking her up later. Congratulated our niece, who came outside to see us(love that kid) and that was that. Very sad state of affairs, but his family's behavior is STILL horrible and we have written them off. It takes a certain kind of person to kick people who are down, even worse to keep doing it, to have it be family members is hard to wrap our brains around but that is what we're dealing with here and we don't want to hang with people like that. They've done so much more harm than good to us and we know now that they can't/won't change and we're not willing to open ourselves up to that kind of treatment again.
So, we are happy to have another 3 month reprieve. Tim, Olivia, and I are like the 3 Musketeers and are VERY close. We're just doing our thing. Coping pretty well despite it all and trying to be grateful each day. I told Tim in 2007 that if he thought he was bailing out on me to leave me to raise a teenage daughter by myself, he was NUTS and I was not letting him off the hook. It's almost 6 years since his diagnosis now, and we're doing it, raising a teenage daughter. So far, it's not so bad. She's a good kid, just whines if you try to take her picture, HATES everything I pick out, doesn't listen to us for beans, and wants everything her friends have. Other than that, she'sdriving me crazy PERFECT. Hoping 2013 is a great year for y'all!!!!
So, we are happy to have another 3 month reprieve. Tim, Olivia, and I are like the 3 Musketeers and are VERY close. We're just doing our thing. Coping pretty well despite it all and trying to be grateful each day. I told Tim in 2007 that if he thought he was bailing out on me to leave me to raise a teenage daughter by myself, he was NUTS and I was not letting him off the hook. It's almost 6 years since his diagnosis now, and we're doing it, raising a teenage daughter. So far, it's not so bad. She's a good kid, just whines if you try to take her picture, HATES everything I pick out, doesn't listen to us for beans, and wants everything her friends have. Other than that, she's
5 comments:
So glad Tim is still doing well, especially given the last 12 months. Gives me and Mike hope that things will stay OK for a long time to come. I constantly worry about the next appointment especially when I read so many blogs where people are on maintenance regimes and talk about "cure" when Mike is on nothing, not even a bone strengthener.
We had B on the phone recently and it wasn't easy. Understandably he had a terrible Christmas and came right out and told Mike it wasn't fair that he was still alive when he's 12 years older than P. Mike took it all in his stride and simply told B. that no it wasn't fair.
Keep up the good work, Tim's got to walk Liv down the aisle yet!! x x x
Thanks for the good wishes, Lorna. And I am glad Mike is doing well too! Met a man getting Zometa the same time Tim was and he's been over 6 years out of transplant and still doing well, without treatment. Over here, they usually keep you on Zometa. Tim only gets it twice a year now, as he did not have significant bone damage when he was diagnosed, but it has been shown to have anti-myeloma properties and they want to make sure that MM doesn't have a chance to sneak up and cause a lot of bone damage. I posted a message on P's facebook around the holidays, in hopes B would see it. I know that none of us can even imagine how hard it is, unless we are living that situation ourselves. It's just been 7 months now and I still can't believe she's gone. I guess that survivor's guilt is all a part of the grieving process, but we just don't get to choose who goes on and who stays.
As for your last statement about Tim walking Liv down the aisle, from your mouth to God's ears, my friend. Love to you both!! xx
Almost six years from diagnosis...wonderful and cause to celebrate for sure! I see why the docs love to see Tim coming, a success story amongst much heartache. Praying for continued good news and health in 2013! I too think so often of Paula. She always lifted my spirits and made my smile. B must feel so lost.
dear denise,
i am so happy to hear such good news, that tim is doing so well 6 years out! such a lovely start to the new year. i know it's so distressing to find out thaT your MM friends have died, and the nurse was so very sensitive to spare tim that news.
i, too, miss paula terribly - still go back to her blog site to leave a message, read some of her posts. nothing can ever fill her space and i can only imagine how b's heart must hurt.
i will continue to BELIEVE for tim, that he will remain stable for years and years.
love, karen, TC (sutherland)
Such great news about Tim and I know it's a relief for you to have 1) reassurance from the medical team that there is nothing to worry about and 2) a medical team you trust and genuinely like.
My heart aches for B and wish he would find a MM support group where he might find a way to work through his grief and fury... he might find out that he is not alone and that might be some comfort.
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