2 years

The 23rd was 2 years since the big blowup with Tim's family. Also his parents' wedding anniversary.
Hard to imagine 2 years has blown by. 2 years of them hardly knowing us. I saw them for the first time in over 5 months last weekend. Dropped Liv off for a visit and talked to them for a few minutes when I picked her up. They came to a JV football game on Monday but my parents were there too so they talked to them most of the time. We were all at a varsity game last night that Liv was cheering at. I don't know if they realized my parents were there, as well as my sister Lori, who they are best friends with, but they did not look for us in the stands and sat somewhere else. We didn't even know they were there until we saw them walk out before the game ended. It was a shutout. We beat them soundly and it was cold so I guess they split because of that. Oh well. Is what it is. It's such a weird situation, but, the one thing I don't think any one of them realized, was that they are such toxic people, that many people find their quality of life is better not being around them. I used to feel some guilt over this. I don't anymore. I have NEVER said or done anything to those people like they said and did to me, and my family. I put up with this for 20 years. They were warned that we'd had enough. And, honestly, my husband is just about the most easy-going guy you would ever meet. If you hit his breaking point, man that is really saying something. That guy lets things roll off better than the majority of people. I hit my breaking point MANY times with his family. But, with Tim, when he hit it, he was done. And with me, I turn the other cheek SO MANY TIMES in relationships that if you use up all those "second chances" you really made your own bed. I still feel bad for Tim and Liv. It's too bad that these people showed them, over and over again, how very low on their priority list they were. Very sad, especially considering our circumstances. But, they did, and we got the message, and we decided to bump them down our own priority list. The result was, we got rid of a lot of negativity and aggravation from our lives. I could never stand being estranged from my own kid. But, I guess their need to blame others for everything and not take responsibility for what they did is more important to them. Takes all kinds, I always say. I saw this post on the MM facebook support group from a woman whose husband has MM and she was ranting about the people, even family, that backed out on them. I thought, "yep, been there, done that." A friend of mine put this quote on her facebook the other day. It said, "The only people I owe my loyalty to, are those who never made me question theirs." How fitting.

3 cheers for STABLE

Tim had his quarterly appointment on Friday. He remains stable at .20 M-spike. Thanks be to GOD.
This appointment sets the tone for our holiday season so I am thrilled that it went well, but, then again, I always am. Unfortunately, someone I really care about was diagnosed with prostate cancer a week and a half ago and I am now worried about him. I tell ya, you just can't get away from this cancer nonsense. This one shocked me. I really thought his biopsy was going to be negative. His PSA
isn't even out of normal range for a man his age. It just rose a bit from the last one and they ordered a biopsy. He goes tomorrow for scans to be sure it is confined to just the prostate and has not spread. I sure pray that it has not. UGH!!!

On other news, Liv sprained her ankle in gym class. I have a big toe injury that I got from being stupid, as in catching for Liv while she practiced softball pitching, whilst I was wearing flip-flops. Won't be doing that again. We are busy doing the football and cheerleading thing 3 times a week. On Mondays, Liv is cheerleading captain for the JV squad and we go to the JV games. On Friday nights, we go see our varsity team play. They are whomping butt this year. Then, on Saturday nights, Liv coaches the cheerleaders for our youth football league, who are generally getting their butts whomped. It's a good kind of busy, and when it's over in Nov., we don't have much to do.

Tim is still REALLY busy at work. Golfing today for only the second time this season, which stinks.
I am taking a 9 week financial course of Dave Ramsey's and it has made me worry about money even more. Did ya ever sit down and figure out how much money goes out every month? Don't. It's damn scary!!! I've warned Liv that if she asks me for a smart phone one more time, she's in BIG trouble.

Basically, things are rolling along in our "normal" fashion. Nothing gets done around the house. We're not doing what we WANT to do, and are bogged down in all the stuff we HAVE to do. Just
"business as usual" around here. Trying to find joy in the monotony, I guess. Such is life.

Happy autumn!

Craig

I went to Craig's memorial service on Thursday night. I had a class that night for this financial program I signed up for through my church, but, this was more important. I was a bit nervous. This was way too close to home, as I've said, with his daughter being the same age as Liv and this being the first service I was going to for a multiple myeloma friend. I was afraid I was going to have a real hard time keeping it together. I'm not fond of wakes. Who is. I think they are brutal on the family. I really hate open casket ones. It's different if someone has had a long life, but, when someone dies in their prime, I'm not sure if seeing people come out to pay respects is enough to sooth the pain of standing next to your loved one's lifeless body. As it turned out, though this service was held at a funeral parlor, they did not have Craig's body there. I was relieved, mostly for his family. There were photos all over, items of his, flowers, and a big screen TV with photos for people to watch. I came out of this service just amazed. I have only known Craig since his dx in 2008. My family went to his house once. But, I did not know about his life much before his diagnosis. He graduated with TWO degrees from MIT. Was a member of Mensa.
He LOVED travelling and had visited 47 states, and 36 countries on 6 different continents. The pictures were nothing short of amazing. He rock climbed, scuba dived, he did it all. His whole life was a "bucket list." I could point at 20 people right now, and all of them combined would not have had the life experiences this one man did in his 59 years here. I was both glad to see this, that he had lived SO fully and explored SO much, packing so much into those 59 years, but also sad, because this was a man that was really making it count and he was so amazing and out-going. It was obvious that he made life exciting for those around him. What a tremendous loss to those who knew and loved him. I found myself wishing I had known him better. Despite all that, this was a man who had his demons. He told me once that he suffered from depression for years. Some of those trips were spiritual quests, trips he made searching for inner peace. Even more amazing that someone who struggled with depression still lived like he did. His wife, Leslie, and daughter, Elizabeth, did really well during this service. That's why I could hold it together. If other people cry, it gets me going. They were very strong. Still, very hard to look at Elizabeth and not feel just as I do for Liv. You got ripped off, kid. And, despite Craig having all these wonderful experiences, he was not done. He had a daughter to finish raising and a lot more he wanted to do. They had a trip booked for Paris that they had to cancel. He had not completed his "bucket list." I came home and spoke to Tim about it. I said, "this sucks, we're doing nothing with our lives." He said, "Denise, they had a lot of money and he could afford to take a lot of time off and pay for all those trips. That's just not how it is for most people." He's right, but, I looked at those pics with Elizabeth in them and thought of how badly I want my kid to see things I saw in this country by the time I was her age. I don't need to go to Thailand and all those exotic places, though there are some countries I wouldn't mind seeing. Ireland, Italy. But, I wish I could just rent an RV and take Tim and Liv across country to see the national parks and all that. I talked to Tim about doing a trip in this country for his 50th instead of some island,(I'm kinda nervous about going somewhere with sub-par medical care) but he seems to want to do the island thing. Oh well. I read something a LONG time ago and never forgot it. It said, "money can't buy happiness, but it can sure make misery a lot easier to deal with."

The hits keep coming

Been a tough week. Too many bad news items to even share them all. Then, Friday, I checked my e-mail and saw one from Craig's wife saying he had died that day. So sad. Impossible not to think about so many people I've met, whether in person or via the internet, who are not with us anymore.
In this case, also impossible not to think about my own family and Craig's 15 year old daughter. My heart hurts this week. Badly. Last Sunday, we went to the 5th annual survivors celebration that our cancer center puts on. It was a splendid day at Liberty State Park. Had a front row seat to see Gloria
Gaynor perform. But, you are surrounded by several thousand people who are either cancer patients or caregivers and family members. Such an epidemic. Tim has his blood draw this Friday and his check-up on the 18th. I got my physical done last week and wished I could change the first name on my lab reports, slip them into Tim's file, and have his docs tell us to go home and that we need never come back. Just seems like so much heartache all around me. A friend called me yesterday. Her son has diabetes and her husband has MS. Also have a daughter that is a softball pitcher, like Liv. They are already in serious financial trouble and may even lose their house and this past week, they found out her husband may be let go from his job of over 30 years. I vividly remember Michael J. Fox saying that he didn't feel sorry for himself, he felt sorry for people who had illnesses befall them that had to worry about money and health insurance on top of it. It's true. What happened to him is awful, but, he knows his family will be fine, financially anyway, and he is spared that worry. They're rich. The rest of us are stuck worrying about money, not living each day the way we'd like to be, watching days tick off the allotment we are given just trying to stay above water financially. While I realize that my family is in better shape than others, I also know how quickly that could change when Tim can't work anymore.
And, here we are, living in one of the most expensive areas of the country. I got my new property tax bill the other day. Just shy of 9600 dollars a year. Works out to 796 a month. How crazy is that? They are re-evaluating this year and who knows, may go higher still. Rises every year as it is. What do we do? Move? My husband's business is here, his doctors are here, and our support system is here, what there is of it. Speaking of support, my mom is getting worse quickly. My dad is STILL dragging his feet about leaving work. My sister had to call my mom's doctor and tell her exactly what's going on because we know she is not getting the whole story. Doctor told my mom she has to stop driving. My dad refuses to push the issue with her. Doesn't like confrontation. Honestly, he has to step up. It does stink what is going on with them, but, from my point of view, hey, at least the "in sickness and in health" stuff waited until they were in their 70's, and their kids were raised, and they had guaranteed health insurance. Tim and I were not nearly that "lucky." So much to worry about. Oh well, another week starts today. Hope it's a far sight better than the last one. Here's a pic of us by Lady Liberty last week.

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.

Dog days of summer

We are done with our summer vacations. Always a bit depressing. We spent a week in Chincoteague. I rented a house right on the bay that is pet friendly and we brought the dog. It was nice. At first we
were a little dismayed about the house. It had VERY low ceilings on the first floor(these are basically old cottages) and it felt really cramped, but, the bedrooms upstairs had vaulted ceilings and ours had 4 windows that all had views of the bay, and a king-sized bed. I woke up every morning and watched birds and boats out on the bay right from my bed. NICE! I'd never get anything done if I had that kind of view at home.
After a few days, we got over the cramped feeling and the location won us over.
The people there are so friendly, it's hard to come home to the metropolitan area we live in after that.
The house did not have internet so Liv and I were unplugged for most of the week, with the exception of checking e-mail a few times using a free site at an ice cream joint. I think it was a good thing to be "off the grid" for a week. It was a much needed vacation for Tim. They all are. He is having his busiest summer ever and is working weekends and nights trying to stay on schedule. He had the slowest winter he ever had in business, and now, he's had to turn down quite a lot of work because he just cannot get to everybody. He is stressed, and that sucks, but, it's better than not having enough work.
Before we went, we had a 75th birthday party, here at our house, for my dad. That went well. It'll probably be the last big party we have in this family. My mom is not into that kind of attention for herself and her memory is getting really bad. It's so sad. Nothing to be done, I suppose, but just bear it. My father has put in for some family leave. He should just retire, and may have to soon, but I know he is afraid to. He loves his job and is a people person. He did not like being home when he retired the first time. My mom is getting to the point that she should not be alone as much as she is and I know it will be hard for my dad, both to quit his job, and to answer the same questions over and over all day. As for me, I am in the throws of menopause and hot flashing my butt off again this summer. I am tired all the time too and my brain is fuzzy as heck. Gosh, it isn't easy being a woman. Health-wise, Tim is doing well, with the exception of headaches, which I think are all stress related. His last check-up went well. His numbers stayed stable, even went down a smidge. At his prior appt. the doc said the recent shingles outbreak could have jumped them up a bit. That's about all that's new here. Same old, same old. I turned 48 in Chincoteague. I don't know how I got this old. Life just blew by me. Tim turns 50 in February. I don't know what to do for him. How do you have a party with none of his family there? We might take a vacation. None of us have ever been to an "island" so maybe that's what we'll do instead. I hate flying, but, it's his 50th, if that's what he wants, I'll suck it up. I'm also nervous about going to some island. When there are medical problems to consider, there's always the fear that something could happen and you're in this place that doesn't have great medical care. UGH, so hard not to think about all those "what ifs." Oh well, as my sister says, "jump off that bridge when you get to it."
In some way, our summer has already ended. Liv started with cheerleading practice last Monday. She is also coaching for the recreation league again this year so we went right back to schedules and running around, even though there were 4 weeks left before school starts. Not happy about that. High school is a whole other ball game when it comes to being involved in sports. It is a crazy amount of time commitment. Anyway, hope y'all are enjoying your summer.