A caregiver's view

The MM listserv is having a discussion right now on caregivers. One person wrote in and said
something I always think about when I meet others with MM who don't have a caregiver
per se or live alone etc. I don't know how they do it and more than that, I wish they didn't have to go through this without someone who "has their back" without question. I have always been the type of person that jumps in and helps others but what I have done in the last 2 and a half years is so much more than that and SO much harder. Some of the hardest things to deal with is seeing someone you love more than air have to go through this, having to function at your highest level ever when your heart is busted in a million pieces, trying to care for and preserve the childhood of a kid while you're taking care of your hubby, and, at times, the disappointments
that you feel with some people at a time when you can tolerate that the least. There are days that I have felt like "wonder woman" and others that I feel I'm standing on the edge of my sanity. Last summer at this time, I felt very close to "losing it". I had a lot of aggravation to deal with at our rental house
and the pressures of having too much on my plate got to me big time. My posts at this time sure reflect my desperation. I was glad to say goodbye to 2008. There's also the problem that stress magnifies the good and bad in your relationship and though Tim and I have a strong marriage, there were times that the "not so great" aspects were much harder for me to deal with. I felt even more hurt than usual that he could treat me badly after all we've been through and the guilt I feel if I argue with him now is overwhelming. We may be living this crazy nightmare but ya know, he still ticks me off sometimes and vice versa, I'm sure. I did finally put my foot down and flat out told him that it could not go on. With all the crap I was dealing with from tenants, my home needed to be a place I could be without takig more of the same. It's also hard that Tim has always been the tough
guy I could lean on and at the worst time of my life, I feel I can't. He is dealing with so much and
beautifully I might add and I don't want to burden him with anymore. I can't cry on his shoulder
when he is faced with a harder situation than I by far. My poor mom and sister have felt the brunt of that. I need someone to talk to. All in all though, I think all three of us have done a bang up job of holding up. I think that we are selfless enough to be strong for the other two and I realize that even our daughter is doing this. I have been a little too selfless with my caregiving as I have seriously neglected myself and all attemps to correct that have pretty much
failed but my kid and my husband are doing well and I am happy about that so I guess in a way,
I am doing that for myself. When I see all the divorce around and really cruddy relationships, I
realize that Tim and I are luckier in that department than most. We've been together for 24 years and we still enjoy each other's company, respect each other and are truly friends. I told him when he was first diagnosed that he will NEVER go through anything alone and he hasn't.
The day we checked in for his transplant,(we stayed in a condo 2 blocks from the hospital where I cared for him whenever he was not at the cancer center) I told him,
"Tim, I just want you to know that there is NOTHING I would not do for you." He said, "good
can you take this chemo that they plan to give me then?" I said, "Tim, I just want you to know that there is ALMOST NOTHING I would not do for you." We haven't lost our sense of humor
either. There's just no way of knowing how you would deal with a situation like this until you
are in it. I'm pretty proud of all three of us but Tim the most. I think his mental strength and
ability to go on with his life in an amazingly normal fashion is what makes it possible for me to
hang tough for him. He blows my mind and I think both of us have new respect for each other seeing what we could do when put to the test. And I think that anyone who is waging their MM
battle without a partner like that is truly incredible. They are the true supermen and women.

Of good news and miracles

Yesterday was Tim's doctor appt. We only went 2 months this time because his immunofixation test last time found a little band. I had gotten conflicting reports about what this meant but personally thought that this test only came out positive if it detected monoclonal cells. Turns out
I was right. I am always nervous about these appts. and I know Tim was apprehensive too though you'd never know by his blood pressure. 115 over 75 in a freekin' oncologist's office.
If they took mine, they'd have me on an beta-blocker drip in minutes. I expected to see an m-spike reading and was trying to console myself by recalling what a blessing it really is that he went into remission at all and has been off all treatment for over 15 months. Despite an almost empty waiting room(Friday seems to be the day to shoot for), it still took some time to be seen
and then we did not see his doc, though he checked on him later during his Zometa treatment to ask how he's feeling etc. The girl hands me his lab reports while we wait in the examining room
and I see that both the urine and serum immunofixation tests are completely negative. I smiled broadly as I know Tim watches my face everytime I read these and we were so relieved. Tom, the nurse practitioner, said that he is still in remission. A little "noise" was detected last time but it's under the radar again. His
white cells are just a hair under normal and have been holding there and this is unlike he has
been since diagnosis but a real good sign. His hemoglobin will always be low, I'm sure. Your bone marrow gets brained from transplants as well as Revlimid. It hangs out in the high 12's or low 13's. We do not have to go back for 3 months again now. This in itself is a blessing. The people in this office are wonderful and we like them so much but these appts. are hard, hard and it's great to be able to put this out of your mind(just a little) for more than 3 weeks at a clip. I'm glad now that we did not tell everyone about what happened last time. I really did not know that he could go back to 0 m-spike after that but Tim wanted to keep it quiet till we had more concrete answers. You realize when dealing with cancer that everything is so relative. I mean, we are living a nightmare. There's no doubt about that. When I really think of what is going on in our life, the tears spring immediately but you have to put it all into perspective to save your own sanity. There are people who never get treatment breaks after diagnosis. There are people with worse cancers than MM. There are kids who have cancer. You never have to look hard to find a situation that makes you realize that blessings are still happening in your life. I don't know if I have written about this before but our best friends' cousin died very quickly of pancreatic cancer a few months ago. She was in her lower 40's and had 4 kids aged 3 to 8. By the time they found it, there was nothing they could do. She was gone in just weeks. I know this is a downer to read
but it just drives it all home how crazy random life seems to be. It makes no sense but it is what it is. Tim says this whenever we go to his doctor's office. "It is what it is" seems so flip but it's true.
If you think you can control your life, you can't. We just have to try our best to cope with whatever comes along. I find it is a constant mind game that I have to play with myself. When the thoughts get too sad, I have to force myself to try looking for the positives. I have to try to live in the present as much as possible. Sure, I worry about the future but I try to stop myself when I do it too much. Worrying now does nothing to help and things are good now. We have to try to enjoy the fact that Tim is living as good a life as he can under the circumstances. He is functioning at a high level and we are able to do things. Living in the past or the future is a big
ol' waste of today. So, here's to today, my friends! :o)

Hold on to your hat, she's spoutin' off again

So here's my beef for today. I just went to a Walgreens to do some school supply shopping
as I know there will be little left when we get home from vaca. And is it just me or do you
get annoyed when kids working at stores think that everyone around them is so interested
in what they have to say that they talk(read yell) to each other across the store, don't work, take forever to ring you up because they think you actually want to be stuck there hearing about their night last night and think it's appropriate to curse in front
of customers. A woman with her 3 kids and myself were trying to read the sales flyers and find the items in the school aisle while 2 boys, who were supposed to be unpacking stock, were
making "jokes" and being so loud that none of us shoppers could even concentrate. The talk was loud and relentless.
Then one of the boys made a joke about how he'll have cancer in a year. Then the words
"drunken playboy" were yelled out and the other woman had enough. She said, "hey guys, there
are kids around and that's inappropriate." I said "yes and besides that, you 2 are so loud, I can't hear myself think. I know you think that we are interested in what you're saying but we're not
and making a joke about cancer is not funny at all. There are plenty of people who have cancer
in their family who don't think it's a joke." So then the boy who said it says,
" my mom had ? cancer a year ago and I acknowledge that." But he said it in such a way as to say that he's allowed to joke about cancer cause he does have it in his family. So I said, "then you should know better and be thankful that you don't have cancer". Well I could tell that they thought I was super square and that they actually do think that most
people are riveted by their conversations. There was a girl standing right in the aisle with them
being really quiet
and I noticed her name tag said asst. manager. She looked all of about 18 and obviously does not
know what her job description is. So I ask the woman I check out with who has worked there for
some time and is probably the only non-teen in the store, "did you hear them talking like that?" The aisle was right by her register.
She told me that she wasn't paying attention. I said, "their behavoir is rude and obnoxious and
for someone whose husband has cancer, their joking about it is not funny." Hell, it shouldn't be funny to anyone. The woman behind me was nodding and agreeing that these kids were out of control and I got the "oh you poor thing" look from her as soon as I said my husband has cancer.
I was pretty mad but talking controlled. I said, "I know all these kids think we are just so interested in everything they have to say but we're not." I'm sure no one is sicker of hearing them talk than her. Then I walk out of the store and hear the F-bomb as I
exit the door. The asst. manager is leaning up against the building having a smoke with some guy who she knew but did not work there. The cuss was not directed at me, it was just part of their conversation. I turned around and walked back to her. I said,
"you are a manager here?" Answer was a deer in the headlights look and a meek "yeah."
I said, "this whole shopping experience was ridiculous. You stand there while those boys were talking like that inside and do nothing while they irritate all the customers." She said, "I was trying to stop them, they wouldn't listen to me." I continued "and now this kid flings the F-bomb
as customers are exiting your store and again, you do nothing." She said, "he doesn't work here.
I have no control over him." I said, "it doesn't matter if he works here or not. He is in front of your store cursing.
That is absolutely unacceptable." I said, "your employees should not be joking about cancer,
saying inappropriate things in front of children or being so loud and obnoxious that people don't want to shop here anymore." She says, " They are obnoxious and they won't listen." I said
"then someone should fire their asses. There are a lot of people out of work who would love the job and do it better than them." At this point, Mr. F-bomb points out my language. I said, "I did not throw the f-bomb and there are no children around." There wasn't anyone else around to hear me. He says "there were no kids when I said it." I am just about ready to go off on this kid when the woman who was behind me on line walks
out and is like "Uh-oh." I said to him, " you had no idea who was coming out that door. I usually have an 11 year old right next to me." I told the manager again that all of this was absolutely unacceptable and walked away. She is obviously not capable of being a manager and kids these
days are taught nothing about proper work ethic as far as I can see. I watched six lifeguards sit
in lounge chairs and read and BS last Sunday while 1 guard watched the whole pool with 2 empty lifeguard chairs and a bunch of kids waited to go off diving boards because none of the guards would walk down and sit in the chair by the boards. The manager of the pool was walking right past them sitting there too. Unbelievable. I got up and said something and they said they were going down in a minute but they all sat there doing nothing and getting paid and our pool
is very close to going out of business. Hmmmm. I wonder why. The kid Tim hired to work with us
last year showed up hung-over on his first day. He was 18. He did not know what even the simplest of tools looked like, could not remember anything he was told, and continued to show up
hungover. He joined the reserves. Boy I bet he's getting a rude awakening now. I don't know people, they say these kids are our future and I am pretty nervous about that from where I sit.

Too many fallen soldiers in the MM war

This past week, I learned of two members of the myeloma listserv who have passed away, as well as an allo patient whose blog I have followed for some time. I have had personal conversations via e-mail or blog with all of them and I am pretty darn
bummed out. These folks were good people. One was a 59 year old woman from Texas. I just
read things written by a few gals who saw or spoke to her shortly before she died. Unbelievably sad. Another was a cardiologist from NY whose dad died of MM some time ago. His dad
was also a doctor as is his son, daughter, son-in-law and his wife was also in the medical field.
All that medical experience kept him alive longer than he would have been without it, I'm sure.
This was a great man who gave me some very good advice when Tim's transplant failed and taking his advice is, I believe, a major reason why we made a treatment decision that was the right one for us. The third is Andre, who had an allo transplant from an un-related donor and succumbed, after a helluva fight, to complications. He was a brave, funny, feisty, larger-than-life kinda guy. It is somewhat of a comfort to see how long people have lived with MM now when I read the "honor roll" that the listserv participates in
but it always weighs heavy on my heart to hear of these losses. There is no way to know when or
if we will be in that position and words just don't seem enough when you want to do something to help these folks. I just hope that this longevity is going to be enough to save folks who have MM now as progress is made with treatments. There is definitely a bonding you have with those who walk in
your mocassins. Tomorrow, we are driving out to PA to visit a couple we have remained friends with since Tim and Jim transplanted together in 9/07. We have stayed in touch with 3 of the patients that went through it with Tim. I care deeply for these folks. We support each other.
The old cliche is true that you just can't understand what someone is truly dealing with unless
you have been or are there now. There is a trust I have with these people that would take years to develop were you all not in this same pressure cooker together. I have met so many people on the internet since Tim's diagnosis
and the caring that comes across these computer screens is real and heartfelt. Perfect strangers
who cry, grieve, but also laugh and rejoice with folks from all over the world. It's powerful and it
is a lifeline for patients and caregivers as we struggle to deal with life's uncertainties brought on by MM. I know that with every patient who has gone from us, a doctor somewhere has learned a little bit more about MM and hopefully this moves us toward a cure. God bless all of us MM patients and families and I pray that these docs who say they think we will have a cure within
the next 10 years, are right. Sooner would be even better.