Fighters

I went to a support group meeting the other day. It occurred to me, as it often does, how hard it must be for the MM patients to sit there and hear about people not doing well or passing away. Our group is very small, despite living in a very populated area and our practice having over 300 active patients, but maybe this is a big reason why it is small. Some patients find it very depressing and don't want to sit and talk about MM. Tim is one of them who refuses to dwell on it and would not do the support group thing for that reason. It is scary and heartbreaking for me too, especially as we lose members who have died, but I think this long, stable period of Tim's has succeeded in making me a bit complacent. I feel temporarily removed from the immediate threat of losing him. Though that bout of disseminated shingles, and the fact that his m-spike is creeping up slowly, seems to be snapping me out of that complacency.

Sadly, a friend of mine is on hospice now. This hits particularly close to home for me as he has a daughter that is just a few days older than Olivia, also named what I almost named Olivia. Elizabeth. Craig's story is a heart-wrenching one. He was working in Boston and had an apartment there and would come home to Jersey on the weekends. He got sick and lost consciousness in his apt. When his wife, Leslie, could not get a hold of him, she sent someone from the building to check on him and he was found. He had sepsis and was in organ failure. The first hospital suspected MM. He was transferred to a bigger hospital and, at one time, had 26 different IV's pumping into his body. He wound up with pretty much every hospital borne illness/infection there is and the doctors told his wife with all surety that he was never going to survive. Somehow, he did. She found our doctors down here, the MM specialists, and wanted him transported. When our docs saw his records, they never thought he would make it out of the hospital in Boston alive. He did, and was transported back here when he was stable enough to be ambulanced down. He eventually had a transplant, which didn't work for long, and has been on chemo ever since. In between, he worked on his "bucket list", taking trips and buying a Porsche convertible. He has been close to death 2 other times since then, the last time being February, when he had a respiratory infection that led to I guess a type of respiratory failure. I found out that one of our docs basically told them to let him go. His wife insisted that they intubate him and put him on a ventilator to help him and see if he could kick the infection. She saved his life. He survived again. Craig is a fighter, and, being only in his 50's, his body is pretty strong. Unfortunately, his MM refused to back down to chemo and when his DNA was checked against the registry for an allo donor, he was told he had a very unique DNA profile and a match could not be found and probably never would. The last time we saw him, I could tell he was very weak and the fight was leaving him. I think he knew. I got an e-mail from his wife 2 weeks ago and he is on hospice at home. I cannot even imagine, despite what we've lived with these last 6 1/2 years, how painful this must be. To add insult to injury, his daughter has significant health issues also and her life has been just a nightmare.

The speaker at our meeting the other day is a woman who runs the central Jersey support group, Paula Van Riper. She has been fighting MM for 14 years and has had so many treatments, including an allo transplant from her brother. Just so many fighters I have met on this journey. The courage I have seen humbles me.
But, when you see someone with young kids that has MM, it is particularly heartbreaking. I've said this before, the fact that our daughter's life did this "180" at only 8 years old is the worst heartache in all this. So damned unfair. So, my admiration goes out to all people fighting MM, cancer, and other illnesses, and my sympathy to them as well, today, especially to Craig, Leslie and Elizabeth. May you feel God's Grace around you.

Back to school

Well, it's Liv's last week of summer break. She has cheerleading practice every day, and coaches the younger girls 2 to 3 nights a week, so, her REAL summer break ended on 8/12. A shame really, but
that's high school sports. She was just named captain of her cheer squad and is very happy about that. Her first day of school is Monday, the 9th. My massage is scheduled for Tuesday. I am going to see, once again, if I can try to put myself on the priority list. I have been a colossal failure at it for a long time. Problem is, I'm not on anyone else's priority list either, so I feel like a well that's run dry just doing for others and wearing myself out. Lotsa water going out, not much coming back in. I've been in a heckuva funk lately. I don't think it's any one thing, I think it's multiple things. Tim's numbers rising has shook me out of complacency. I recently found out that my father has done NOTHING to obey the doctors' orders from the hospital after my mom's scare back in July. Didn't even fill the darn prescription for the lower dose of Aricept. Then, my sister went over to their house while he was at work and found out that she isn't taking ANY Aricept at all and we don't even know if she realizes it or not. She claims she's taking it. The bottle Cathy found was filled 5 1/2 months ago and is almost full. We asked my dad several times to help her monitor her meds and he never started. So, Cathy had a talk with him and sent him a lengthy e-mail. I was too angry, I would have definitely given him a piece of my mind been a quart low in the diplomacy dept. He is avoiding the problem and it's time for him to step up. My mom needs help and care and we live about 50 minutes from them and he has to be the first line of defense. We can help, but we each have our own problems to deal with, we can't do it all. He is dragging his feet on taking family leave and retiring. He's just not doing anything he needs to do for her. UGH!!!

Tim is swamped with work and has turned down an awful lot of jobs, which hurts, but it's so hard to find a kid that wants to work and right now, he is just too busy to train anyone. It's just him and our one employee, who has Crohn's disease, so, like Tim, he has doctor appts. and fatigue to deal with. Tim has been really stressed and tired so that bothers me too. I wish he didn't have to work so hard.

 I am about a week away from wrapping up a 3 year stint as treasurer for my church. WOO HOO. It was WAY more work than I was led to believe(our church also runs a school) and I will be glad it's over. As usual, I have a lot of big projects/chores I have to attack around here and am still having a hard time finding the energy and desire to do them. I think a lot of
my funk is based in the fact that I am doing nothing but BUSY work, that never stays done. There is nothing really satisfying about it at all. I've said it before, I wish we could simplify our lives. We live in an expensive area. Taxes around here are very high. Cost of living is just ridiculous. I know we are in no position to move, and I know we won't, but, some days, I just wanna chuck it all and start fresh somewhere else. This month, it will be 28 years since Tim and I got together. We were just kids, 20 and 21 years old. I don't remember what life was like before him and when I think about losing him, I honestly don't think I'll make it. I know that I cannot even imagine how painful it is to lose someone who is half of you.

Next month, it will be 2 years since that argument that split us apart from his family. It shows no sign of healing, and, truth be told, I think we are better off without them. None of them will ever change and we can't let people into our lives who kick us when we're down, repeatedly. It's hard enough to "buck up" with what we're going through without people throwing more pain on the pile. I have not seen or spoken to them since Liv's last softball game in May. They will want to go to see her cheer this fall. I'm civil, but, that's all. It's not fun for Tim and I. We both prefer not having to deal with them.

Still wondering what to do for Tim's 50th birthday in Feb. We'll probably take a trip. I think he would love a party though and it's so awkward. I guess I could just invite all his friends and do a friend party
sans family.

I try very hard to look on the bright side of things. One does not have to look far to see people in  worse situations, but, as I told my sister, the truth is, my best day is most people's nightmare and it's really hard to shake that. At church, we have prayer cards that you can write names on and our Pastor reads them aloud during the prayers. I like that they do this. I always write names of people I know who are battling MM or some other cancer. Unfortunately, the list could go on and on. But, I always feel better hearing our whole church pray for these people I care about.

So, that is the tale from here. A new school year, a new beginning, and a "Stella" over here who DEFINITELY needs to get her groove back.

Welcome autumn. Hope it's a groovy season.