Buddies, even when the goin' gets tough

So, one more post about friends and finding out who they are. I went to an MM support group meeting

last week. We had a woman join us who was recently dx'ed with MM. She is already seeing some

of the disappointing things some of us see in friends and family when something like this hits. My recommendation,

quite frankly, don't bother too much with folks who don't have the ba*** to hang in there with you. This is not to say don't give folks a chance to digest it and get over that uncomfortable feeling, it's to say that sometimes folks just don't like difficult situations clogging up their lives

and you can't get bogged down in trying to save relationships with them. Another member of our group, I guess feeling a little more generous than me, spoke up and said that "your friends will come around in time." (In-laws may be a different story) Sometimes, this is true. When first diagnosed with a major medical issue,

people do become uncomfortable around you. The reasons for this, I think, are: Not knowing what to say and being afraid to say the wrong thing or having you burst into tears on them if they bring "IT" up. The realization that this could have just as easily happened to them or their spouse etc and not wanting to deal with that fear. Being the type of person who just cannot deal with bad news, or things that aren't "pretty and tied up with a bow." But there are people who just are not going to come around even after the newness of your dx is over. They either cannot deal with the changes that are happening to you or they need to take the easy way out and not expect anything of themselves, like being a

true-blue friend. One thing I have noticed too is that if you have been a giver and someone else, the taker in a relationship, that taker will realize that you are not going to be as useful to them with this problem taking up all your time and energy. They certainly don't want to be the giver so they fade out of your life. We all can be overly sensitive sometimes when we're hurting, and maybe take things the wrong way. We do have to be understanding at times that

it's a helpless feeling not knowing what to say or do. BUT, in life, you, unfortunately, will learn that some folks just are not on your team. They are not going to get themselves bogged down in your problems or grief because they don't want it to affect their lives. They are not going to be that person who calls and invites you to lunch, drops off a meal, remembers to ask how a doctor appointment went. And that's OK. To each, his own. All I'm saying is that you may not want to put all that much effort into those relationships. The little time and energy you have leftover after dealing with your own or your loved one's illness is better spent amongst folks who are on your side and make you feel happy. Too many times, some friends and family members are not on that team. Tim and I have dealt with this and it is a real disappointment, made even harder by the fact that you are finding out these sobering truths at the worst time in your life, but it makes us

all that more grateful for the folks who have stayed in this with us. Tim's best buddy Mike, who he has known since they were 5, not only calls Tim and checks up on him, but he calls ME during the day at home and says, "How ya doing sweetie? Have you done anything for yourself lately? Ya gotta get out there and get your toes done or something."

He would drop anything if we needed him. Now THAT is a friend and the reason he is Olivia's

Godfather. If you have a friend like that, you don't need much else. 'Cept maybe chemo.

California dreamin'

This morning, as Tim and I shovelled 8 inches of snow off both driveways(they said we'd get 2-4 PPPPFFFFTTTT on them), he reminded me that

our employee has to have rotator cuff surgery. Alan thinks he'll only be out of work 2-3 weeks.

We are hearing more like 6-8 from folks who've had that surgery. This presents a problem. Tim's job is extremely physical and at 47 and having MM, it's challenging to say the least. But

to do it alone, as he used to, is not an option anymore. We had to let our last "helper" go because

he kept showing up for work hungover. Nice enough kid, but there's issues there. The last day he worked for us, he showed up, parked his car in front of our house(a no parking zone) and after meeting the guys in the back yard, walked back to his car and hurled. He'd been warned before about coming in green(the color he literally was one day on the first week with us,) but apparently partying is more important than work. So Tim said this morning, "I should tell Alan

to get the surgery done at the beginning of the summer and we'll take the summer off." (the doc told him it was not a rush) That got my mind to wandering about a cross country trek. If you've been reading this blog awhile, then you've read that my family went across country for 2 months in an

RV in 1977 and I have always wanted to do it again. Reality and bills being what they are, Tim has a business to run and summer is a busy time for him unfortunately. Folks think that getting their wood floors done in summer during their vacation when noone is home is the perfect idea. It stinks for us but we are grateful Tim has so much work. Momentum being what it is, it is a really risky call to blow off 2 months worth of customers because Tim's business is based on referrals so you put a big ol' hole in the flow of all that. I tell ya though, I was planning in my head this morning. I would rent an RV and hook that sucker up to Tim's fancy truck, pre-pay the bills, throw the puppy and the kid in the back seat and head west. What I wouldn't give to do this. You have no idea. I wish I didn't hate flying so much. If we had just a few weeks we could

hit a bunch of national parks by flying about. Not the same as hitting the open road but it would have to do. I could daydream about this forever. I've seen it all before but at 12, you don't appreciate it as much as I would now and I want Tim and Olivia to see it all. Yosemite, the Grand Canyon, Mount Rushmore, Yellowstone, Death Valley, Vegas(for Tim) the Grand Tetons.

This is my dream and the first thing we'd do if we could just hit the lottery.

What do you tell them?

There was a post on the acor site today from a man whose wife has MM and they have a 9 year-old boy. He is worried about the future, wondering how to prepare for it, and worried how all this
is affecting their son. One of the hardest decisions to make, I think, is how much to tell your kid(s). Olivia was almost 9 when Tim was dx'ed. He was hospitalized in intensive care with sepsis and she was not young enough to hide all this from. He was going to lose his hair. He was really sick and came home painfully thin.They say that if you leave it to their imaginations, they will worry more and think of even worse scenerios. Besides all this,
I am a ridiculously honest person. I can't stand lies. I don't want to teach my child not to trust
me by lying to her. On one hand, this rotten turn her life took was cruel and I wanted to protect her so much. On the other hand, I did not want her screaming at me years from now because she was full of regrets and angry at me for not telling the truth. I told her but left out the really scary stuff. It was several years before she came into my bedroom, after being tucked in, crying because she was afraid of something happening to Tim or I. I told her this was way too much for a little girl to handle and to let God take care of that one. I assured her that Daddy was doing great now, etc. We usually try to go to Tim's doctor appts. when she is in school and not even tell her but sometimes, we have to arrange a play date or school pick-up for her and we had to do that this last time. She asked me why Tim had to go and I told her they check his bloodwork every couple of months. I don't know what Olivia thinks as far as if he is cured or what. The problem is, you do not want to make them any more curious than they already are. You've got to say enough to keep them from wondering or worrying too much but not enough to completely traumatize them, of course, or have them running to the internet to fill in the blanks. The first time I looked up MM on the internet, I came upon something that said that a person would live about 2 years if dx'ed at stage 3. I shot off my chair and screamed. No one was here. Kid in school, husband in hospital, but I lost my mind. I did not want to tell Olivia NOT to look MM up on the internet because if she had not thought of it already, what do you think she was gonna do after a warning like that? Recently, I realized that she had probably already done this by this age so I gave her a vague warning that there is a lot of outdated information out there about MM. I always tell her she can come to me and talk about anything. I ask her how things are going for her at school, and in general. She always says things are good. It breaks my heart what has happened to our little girl though. It's so damned unfair.
She has been such a trooper but I fear the lasting effects all this could have on her. Kids are the first thing we think about whenever something happens. You worry about them until you take your last breath on this earth. They are the biggest blessing in your life but also the focus of the biggest fears you have as a parent. Olivia is almost 13.
I have a feeling that some REALLY hard questions are coming. What the heck am I going to say to her? I do not want to ruin any chance of happiness that she has. I also don't want to lie. Life in this day and age is freekin' hard enough. I think this is Tim's biggest sadness about his MM. How it affects his daughter, me, his parents. I beg God not to take him at all but at least not while Olivia is SO young. Well, I gotta go watch "The Big Bang Theory" and get some laughs.
Any advice about handling this with kids is gratefully accepted.

A cluttered life

Well, things have settled down here a little. Both our apartments are rented and the work
we were doing is finished. The upstairs apt. now has its own washer and dryer, the downstairs has some new lighting and paint is touched up in both places, etc. They look great. The new tenants love their new homes and hopefully, they stay a long time. Now I'm
helping my sister's father-in-law rent the apt. in his house so hopefully, we can find a good tenant for him too. Tim is very busy with work. Again, we are very grateful. So many flooring guys are sitting home with phones silent. Some have already gone out of business. Tim's reputation is
carrying him through what to me, seems to be the depression of our generation, and we feel very blessed. I have finally finished our year-end business paperwork and now it's right into starting our taxes. WHAT a dreaded job. I am the biggest procrastinator I know now too. When I worked, and sometimes 2 jobs, I never put off getting things done. I had very little time to myself so you did what you had to do in the snippets of time you had. Now that I've been home for so many years, I put things off 'til tomorrow all the time. Then I keep putting it off and it's gotten out of hand. Sometimes I wonder if I have adult attention deficit disorder. I have a hard time staying on task.
Tim swears that it's all due to stress. The memory problems and all of it. Maybe. I never seem to be able to concentrate like I used to. But, then again, my mind is always somewhere else.
I realize lately that I have been too immersed in MM. Tim has been in remission for 2 1/2 years and I still live and breath MM. I feel like I have to know everything I can so we make the right decisions later. It's an awful lot of responsibility and not shared in our case but I don't think
I can change. Some days, I'd like to stop the Acor listserv posts from coming to my e-mail.
But then I remember how much I learn, things our doctor would never have the time to tell us,
and I can't make that break. I've also gotten to know people there and I don't want to make the break from them either. Tim has said several times that I think about MM WAY more than he does. I need to curb my time at this computer. It's become an escape from what I should be doing around here. It's really my own fault I am so behind and the added stress of that is not helping. Roo posted about house clutter this past week. The post hit home for a bunch of us, evidently, so I guess I'm not alone. I was tempted to download a pic of my spare room, which I desperately need to convert into a home office, but I looked at it yesterday and was aghast myself. I have to attack it. So much of the STUFF around here is Tim's though and I can't just throw it out. The attic gets so hot in the summer that you can't put everything there. The basement is so full of stuff so there's no room down there. There is simply no way I can get this
house back to some sort of order unless we get rid of stuff. They say that living amongst clutter causes stress. I believe that wholeheartedly. I live it everyday. When I see folks who have these wonderfully uncluttered homes, I feel so inept and I really want my house to look that way. I can't sit in any room of my house and not see construction work that is still not finished or piles of paperwork that need to be dealt with. I guess it's like anything that has gotten away from you, you have to break it down into small steps and just get started. Time to start my own "honey-do" list and get cracking. As I mentioned on Roo's blog, I have a neighbor whose house is just a little bit bigger than ours. She has 4 kids(2 are twins) 2 dogs, and 3 cats. Add to that, she substitute teaches, and her kids have always got friends over so people are in and out of her house constantly. Despite this, every room in her house looks like a magazine layout. Quite frankly, it pisses me off! Actually, it makes me mad at myself because I have no excuse for my home not looking better. I try to tell myself she must be obsessive-compulsive, right? I was actually a real neat freak as a child. Used to clean my room and my parents' house all the time because I couldn't stand to be in a room that was such a mess. My house is clean in the germ way. I keep up with that part, kitchen, bathrooms, all that stuff, it's the paperwork and clutter that has gotten away from me. I have to come up with a plan of attack. Where to start?

Here's one from the twilight zone

I went to one of those "home parties" last night. You know the type, they sell stuff for MUCH, MUCH more than it's worth because people are making all sorts of commission and the host is getting all sorts of free stuff. I never have these parties, but I'm invited to quite a few and I go
just to be sociable. This one was held at a friends' house who just moved from across the street
to a wealthy town just a few miles from here. She has a lot of hoity toity friends but there are
a few who are down to earth and I like this couple so I went. So I listen, and laugh inside, at all
the posturing and bragging going on and think, "my gosh, it's amazing how much people worship
money." There was this one woman there who was talking over people and bragging all night.
She kept talking about her farm. I guess they have a country house upstate NY or something.
So she is gabbing away saying she'd love to have a girls' weekend there. After all she has 7 BEDROOMS YA KNOW. I'm thinking she may have been the owner of the Hummer parked out front. Anyhoo, just a little bit before I left, she is saying that she is having the latest in therapy for post traumatic stress done on her kids. It's the same type of thing they are using on Vietnam vets now. She says it's just SOOOOO exhausting and intense. Then someone asks her if something happened to her kids. She says,"yes, last summer,
my husband was on the tractor at our farm and it flipped over on him and crushed him and he died in my arms and the kids witnessed the whole thing." WHHHHAAAAATTTTT??? I looked
up from my overpriced jewelry catalog and all eyes were on her and the whole room went silent.
She has 13 year old twins and I think a younger kid too. She has just spent the whole night bragging and carrying on about her farm and how she has so much property at her home here too and HER HUSBAND DIED IN HER ARMS and THIS is what she still thinks is important.
Keeping up with, or rather, surpassing the Joneses. I drove all the way home shocked at how incredible this scene was. HOLY Toledo. I told Tim and said, "you should have heard how she
stated all this. So matter of factly, like she was talking about the weather." He said, "she's probably drugged up and having a good ol' time with the insurance money." Wow. I am still so
shocked by all this. I'd think she'd want to sell the farm and never go there again but no, she wants to get a girls' weekend party together. Let the wine flow and show off her country home to everyone. I don't get it. Anyway, on to superbowl. I don't watch too much of professional sports anymore but # 90 of the Packers graduated from good ol' Westwood High School here in our town. His family still lives here and his brother is a sophmore there now. They
had a rally in school the other day to root for him so let's go hometown boy. Go Packers!

Good news... I think

We just got back from Tim's doc's office. His electrophoresis and immunofixation both showed

a faint band in IGG Kappa region against a dense polyclonal backround. I always read this

as his M-spike peaking its head out. The doctor said again that this was fine. This was nothing

to worry about. There is no quantifiable m-spike. Okey dokey. He's one of the top MM specialists in the world so I guess I'll listen to him. His tests have shown this before and the next time, it showed, "no monoclonal proteins dectected" so I'm not too worried. They don't want to see Tim any earlier

than the normal 3 month span we've been doing. Oh and I made them run his vitamin D

levels. They have found that many MM'ers are low in this. A lot of the population is but MM'ers

are even more prone to it and you need vit. .D. It's good for your bones and lots of other things.

Sure enough, he was low. The doc told me to give him my D pills. Tim is already grumbling but

I'm gonna stick to this with him. He of course turned it on me and said I never take vitamins either but I'm starting and I guess my ragging on him will be a reminder for me too. I asked the doctor about the total therapy protocols. Both Tim's docs used to work in Arkansas with the

doctor who does this treatment. I also found out that the gene expression profiling that is used

in Arkansas did become available for use in December. Prior to this, this was not available to

other MM docs, as far as I know. So, I was glad to get some questions answered. I told Tim that if he was gonna get MM, he picked the right place to live. His docs are known internationally and

are among the top in the world. And besides that, they're really nice guys who don't wear lab coats and act like regular Joe's despite being CRAZY FREEKIN' BRILLIANT. We really like the

folks at our oncologist's office and if you gotta be at a cancer center, it helps to be among such nice people who truly care about you. Gotta take your blessings where you find' em. Well, back to the rental. One last punch list to finish and a new tenant moving in this weekend and hopefully, we can get a rest from that place and I can get back to my own disaster of a house!

The above pic is our rental. It's a nice joint. There is a 3 acre nature preserve behind it with a little river and there are lots of varmints: deer, geese, ducks, an occasional fox and red-tailed hawk. So pretty with all the snow now. But I am so DONE shovelling driveways for sure!

Tim's Birthday

Tomorrow is Tim's b-day. He'll be 47. On one hand, that seems so old. Where has the time gone? Ya know, I still feel like we're 28 or something. My body does not feel that way anymore but my mind does. Tim is now the age his mom was when I started dating Tim. I remember both his parents' 50th birthdays and now Tim and I are gaining on our own. On the other hand, 47 seems so young. Especially when you are diagnosed with MM, a cancer that mainly affects older people, and you are dealing with things in your life you did not expect to be dealing with until you were "old". It comes to light quite a bit as we sit in the waiting room with
a bunch of folks who are grandparents and we have a 12 year old. These last few years have been pretty good though. We are grateful to God for a long, chemo-free remission and we hope
it continues. Last night, something really funny happened. Tim was at our rental shovelling the driveway and his father dropped by our house here. Tim's mom is on a plane to Italy right now(first time going to Europe) and she needed me to print her boarding pass. So his dad picked it up and then drove around the corner to our rental to see Tim. Now, you'd have to know his dad.
He is a tough guy. Still pretty built at almost 74 and not a sentimental type AT ALL. Tim told me his dad walked up to him last night, hugged him, and said "happy birthday, I love ya, ya know."
Tim was bowled over. I don't know when his father has ever told him that. Granted he had the wrong day(b-day is the 3rd, not the 1st) but still a VERY BIG DEAL for Phil to do that. He's a piece of work, that Phil. He could p*** off a preacher most days but he's got a good heart and is a really decent guy under the gruff exterior. So, a little Thankful Thursday for us tomorrow. I am
SOOOOOOOOOOOOOOOOOOOOOOOOOOOO thankful to have Tim here for his 47th and hope there are many more to come. I love that guy more than air!