Everything's different for us

I have, many times, said that Tim's cancer diagnosis felt like a huge meat cleaver coming down and separating us out from the rest of the crowd. Our lives were no longer normal. MM changed everything. Today was one of those days that drives that point home. After dropping Liv at school, I came home and Tim and I got into a conversation before he left for work. He's had a rough few weeks. Our employee wound up sick 2 weeks ago and came in that way. Tim asked him to stay home the next day because he did not want to get sick but it was too late, he came down with it a few days later. Then, our employee wound up in the hospital having hand surgery due to an infection that formed when he got a splinter (working on a side job of his own) that he did not get all the way out. He is now out on temporary disability and my husband is doing the job of 2 men, while sick.


If you have followed my blog, then you know that it is my belief that my husband's MM was caused by the chemical exposures of being a wood flooring contractor for almost 3 decades now. Tim prefers to think it was just fate. I have heard of others in the same business getting MM, via the myeloma Facebook sites, but I don't tell him. It does not help him to think he did this to himself by not wearing protective gear. But this morning, as he was about to leave for work, he was exhausted and just wanted to go back to bed. He said, "I have to kill myself to make a dollar" and the words were like that damn meat cleaver going right through my heart. For others, that is a figurative saying, for us, it's probably true. The way he made his living may literally cost him his life. UGH. PAINFUL to know that. I told him to become a cop. Why didn't he listen? I told him to wear the respirator. He didn't listen then either.


At 10 am, I had to go back to school and pick Liv to bring her to an orthopedist. She has had knee issues since her growth spurt 4 years ago and they have not resolved. I was not too worried, so many of her friends have the same thing and her pediatricians have checked her out. But the pain has been bad enough that, at her last physical, her doctor and I decided it's time to have a real trained eye look at them. So, we went this morning. What a great guy. He was SO nice to Liv. But, for us, or at least me, this appointment did not go down like it would in a normal family. I had to download paperwork and fill it out ahead of time. It asked questions about her parents' history, which included whether either of us had cancer. I had to answer that Tim did, wrote to the side of the checked box that it was MM. Then, because I learned the hard way that you can NEVER be sure, not even with doctors, I had to write a note and staple it to that sheet, knowing the doc would glance at it before he came in the room. It said, "Please note !!! I do not want my husband's cancer discussed in front of our daughter. The doctor has no way to know exactly how much information we have shared with her about it."  I folded the sheets in my purse so she could not see them. The thought that he could say anything in front of her about having to rule out MM due to the family history made my blood run cold. When we walked into the waiting room, I pointed to the seats furthest from the desk and said "wait here." I then went to the desk, placed the sheets in front of the gal, and said quietly to her, "the doctor must see this note and please do not read it out loud." She said, "OK."  Despite knowing in my heart that this knee issue was nothing serious, you cannot be totally at ease about it. I have heard of too many teenagers with MM. I have heard of too many families that have multiple cases. I recently read that many MM'ers have joint pain too. I heard years ago that when MM is the familial form, it can hit the next generation 10 years earlier than it hit the previous one. Tim was 43 when dx'ed and had it for a while before diagnosis. As parents, you always have that worry in the back of your mind. Between Tim's cancer and all my health issues and scares over the years, no doctor appointment is ever "normal" for us. A lovely nurse took Liv to do x-rays. I stood in that exam room alone, praying
the whole time. In times like these, praying takes a form that seems more like begging. My prayers were, "Please God, we've been given more than our share of grief to deal with. I don't even know if this poor child remembers her life before this tragedy with Tim's MM hit. Have mercy on us, Please. NO MORE TRAGEDIES." They came back into the room and another nurse was loading the x-rays up on the computer screen right in front of us a few minutes later. I was afraid to look. I knew if I saw so much as one dark circle or heard the term lytic lesion, I was going to lose it and someone would have to peel me off the floor. I waited for the doc to get there and looked. Thank Heavens, she is fine. Her x-rays looked great and she has this common "travelling patella" issue that so many girls have and even women into their 20's. In doctors' terms- bilateral patellofemoral syndrome. In my terms, mercy.


After getting her lunch, I drove her to school. There is a gal she is friends with that she and her friends sometimes find irritating. We know their whole family well. They go to our church and Tim has done floors for several of them too. This girl's aunt is dying. I just spoke to her father(it's his sister) in church yesterday. His mom had to move in to care for her and they have stopped all treatment. She has metastatic liver cancer. They thought she beat it a few years back. It returned. I told Liv, "I know that Britt can be a pain, but be nice to her. Her aunt is dying." This is a childless aunt who is always so great to her nieces and nephews, so I compared her to my sister, who is similar that way. I said this is a horrible thing. Britt's grandmother is watching her child die and it's hard for all of them. I told her that everyone has their trials in life and you should always remember that and try to be kind.


One of her favorite songs had come on the radio and we laughed because the first line is, "when your legs don't work like they used to" or something like that. Having just found out that her patellas go places they're not supposed to, she told me that she and her friend, Emily, who has the same thing, always point to their knees when they hear the line. I told her that she is a very lucky girl and to remember that if you have your health, that's the most important thing. I said what you have here is a common thing and no big deal but there are so many kids dealing with poor health or serious learning disabilities, and she knows some. I said, "you have none of that. Your brain works great and your body too. You are a lucky girl. Be grateful for that Grace in your life." I hope some of these things I tell her sink in to that brain of hers. The kid doesn't listen to me much. But, it's hard to have that thought run through my head, silently, whenever I tell her something like this, because her luck isn't great where her dad's health is concerned. And his bad health is enough to severely affect her life. Very sad. Very hard. Everything is different for us. Every situation is changed because MM is in the picture. And it's just something we have to deal with. For today, my husband and I are holding on to the fact that she is healthy. We know not every parent can say that about their kid right now. We are grateful. We are blessed. And we move forward.

8 years...............Life goes on

On March 8th, it was 8 years since Tim's MM diagnosis. Every year, from the 5th to the 8th, I re-live those hellish days when he was in intensive care and then diagnosed with MM. There are things that have happened these last 8 years that have been forgotten or dulled down in my memory, but those first days seemed to move in slow motion and the memories are vivid. I think in times of high emotion, that's how it works. It makes such an impact on your brain, it is burned in there forever. I am grateful for this time, but, as many of you know, I did not know 8 years ago that we would have it so our lives have been spent in month-long and then 3 month-long intervals of check-ups and prayers and holding our breath and exhaling. Tim turned 51 on Feb. 3rd. I turn the big 5-0 in August. Our lives are pretty much following the same pattern they have been. Tim works too hard and too many hours running his own business. I spend too many hours doing paperwork and things I don't want to do. We tick few to no things off our "bucket list". We taxi our kid all over the place and try to enjoy this time with her. She gets her driver's license in 2 months. As I've said before, I am petrified. Softball season just started and we have high hopes for a better season than the last 2. The last 2, she got stuck pitching with no back-up pitcher and no fielders to speak of behind her and a coach that had no clue how to coach softball. Her husband coaches the varsity team and takes everyone with talent with him, and left my kid to pitch with no help out there on the JV team. So, what do you do after being taken advantage of like that and having your arm blown out 2 years in a row? You stop being a pitcher and let him find someone else this year. So, it will be interesting to see what happens. Unfortunately, the younger kids coming into the program know what happened to Liv and several have refused to admit they can pitch because of it. Oh well, he is reaping what he sowed. I cannot believe that we are looking at colleges already. You think you are going to be doing this senior year but it all starts in junior year. I think that going away to college will be a good thing for Liv. She desperately needs to learn to take responsibility for herself. My many attempts to get her to do that have fallen flat. But, it will be VERY hard on Tim and myself, as I have said. I want to keep her somewhere not too far away. There are many reasons for this, but, Tim is reason #1. Anything can happen at any time. I don't want our kid a 7 hour drive from here if something does happen. We live in an area where there are very good colleges all over the place and there's just no reason she has to be states away from us. She does not even know what she wants to major in so it's not like she has to go to college XYZ in Arizona because they specialize in her field. So, we are touring colleges within a 2 hour radius and we'll see if we come up with something. I seem to have pulled out of a very long funk I was in. Oh, I still have my moments, but, I am trying to be hopeful. I have come to accept things about people that I didn't want to admit. It's kind of depressing but, there is a certain "letting go" when you just stop fighting with reality. It is what it is. I am not one to live in a dream world. I do not put rose colored glasses on and I prefer to deal with the truth and just get on with it. But, sometimes, there's just no safety net when you live like that and everything hits you in a "blunt force trauma" type of way. I understand now that there are people who just had no intention of riding this out with us. Sadly, we share DNA with those people and it was hard to wrap my brain around it for a long time, but, again, it is what it is. People make their choices. We learn to live with it. I read something on Facebook that said, "don't cross oceans for people who would not jump a puddle for you" and that's something I needed to get better at. I have a lot on my plate. I cannot fritter away time, energy and emotion on people who do nothing but suck the life out of everyone around them.
So, after this cold, snowy, dreary winter, I look forward to spring and am going to try to get out more. It hit 60 degrees today and I took my dog for her first walk at the park. We came back wet and muddy. Looks like New England is gonna have nuttin' on us for a mud season this year. The snow mounds were 6 feet tall in my yard just a few days ago from clearing the driveway. OY!
So, it's on to SPRING. Thank goodness. Enjoy!

A day in the life.....looking back

A subject came up today that brought me back to a day just a few weeks after Tim's diagnosis. I have not been able to get it off my mind since. Tim was dx'ed with strep sepsis, a VERY dangerous illness, and spent about a week in the hospital, most of that in intensive care. This was what led to his MM diagnosis. After he came out, and we had our first devastating appointment with an MM specialist, he was put on what's called "pulse Dex". We were in the process of getting Revlimid squared away financially, but it was 40 mg. of dex, 4 days on, 4 days off, with other prophelactic meds to ward off infections (which didn't work, in this case). It is a brutal protocol and not used much now, as a clinical trial that broke just a month after this, in 2007, showed the mortality rate was much higher than lower dosing of Dex and that the lower dose still worked well enough. Tim was in the midst of this for the 1st month before his doctor lowered the dose, and suffering the side effects, when his nephew, Danny, (his Godson too) was making Eagle Scout and there was a ceremony and party for him. I did not want to go. For one thing, Tim woke up feeling horrible. For another, I was still dealing with unbearable grief over the diagnosis and unable to control the tears. Being in a crowd who all knew and would talk about it was too much for me. I felt like our family was just cleaved from the rest of society now, as we were living in this nightmare world, being sucked into a vortex of pain and fear. Everyone else was going on with their normal lives. Add to that, we were barely speaking to his sister-in-law, who is as toxic as they come, and this was just not a scene I wanted the 3 of us to be in right then. Tim was resolute, wanted to be there for Danny. So, we leave. Within 10 minutes or so of leaving our house, I am pulled over by a cop. I am ready to blow. I am so upset that Tim is making us go and now look, I am pulled over. I saw a cop taking radar on the other side of the highway at the bottom of a hill, which I think is just unfair as you can't help but pick up speed unless you ride the brakes. I flashed my lights up further to warn cars (OK so maybe this isn't right) and I guess the "pick-up" car saw me and pulled me over. I was not speeding, it just ticked him off to see me flash my headlights. He takes my paperwork and goes to check my license. Tim is in the passenger seat, feeling awful, and I am thinking, WE SHOULD NOT BE GOING TO THIS THING, THIS IS A SIGN. I do something I know you're not supposed to do, but I am thinking, we may lose everything, financially, and now my insurance might go up. I get out of my car and walk back to the cop. I say, "just so you know, my husband, who you saw in the passenger seat, was just diagnosed with cancer 2 weeks ago. Right now, it looks like we might lose our business and our house. So, if you still want to write me a ticket for flashing my lights, go ahead." I walk back to my car. He decides not to write me up, and I see him take a look at Tim as he hands me back my stuff. We go to the party. I am deep breathing all day trying not to cry. They show a picture show of Dan from the beginning of his boy scout career to the present time, and Tim and I are both crying, thinking that he will not be here to witness these milestones with Olivia and how effing unfair that is. Tim is feeling worse. Has the shakes. Says he wants to leave and go to his brother's house. I say, "please, let's go home" but he says "no. Maybe I'll feel better just relaxing back there". Mind you, his brother and sister-in-law would never go out of their way for anyone, certainly not our kid, but Tim and I try to do what's right in our heart, despite others doing awful things to us. This time though, I thought we were going too far and sacrificing too much. We go back to their house. He gets worse and worse but tries to hold out. I am upset. Finally, he agrees it's time to go. We make the 45 minute drive home. He looks so bad and is now feeling warm, so I stick a thermometer in his mouth. 103. Call the docs and, yup, we have to go to the ER. I have to call a neighbor and ask if Liv can come over and possibly stay the night. She says, "of course". My kid is starved, didn't eat any of the party food. I ask Julie if she could just please give her a bowl of cereal or something. But, this is the part that broke my heart. I try to calmly tell Liv that I have to bring daddy to the hospital. Her face collapses and the tears form. Within about 2 or 3 seconds, she stops herself, takes a deep breath and says, "NO, I have to be brave." I just wanted to die. She doesn't want to cry in front of our neighbors. She is trying to be strong for her daddy. 8 year old little girls are not supposed to be brave for adults. They are not supposed to have daddies with cancer who go to the hospital. They are not supposed to suck back their tears and tough it out. I was so incredibly sad I wanted to cry, but I am being strong for her, and Tim. I am so dang mad, I wanna punch someone. This scene flashed into my head today when I was talking to someone about being pulled over by cops. It's hard to recall days like that. It' even harder to know there might be worse ones coming. Living in the moment is the biggest challenge for someone like me. It's all at once impossible and necessary. So many worries creep in. But, so much joy can be robbed by letting them. So, we are still trying to make good memories for ourselves and Olivia. But, many times, I just wish there was a "delete" button on our brains where we can wipe out these heartbreaking ones. A little while ago, I thought to myself that, at least, Olivia probably has no memory of that day. I just wish I didn't either. For now, I am grateful for the fact that Tim has indeed seen many of those milestones we thought he would not see. And I sure hope he sees a heckuva lot more too.

2015

Well, another year has whizzed by at lightning speed. It's scary how fast the time flies. I have spent an enormous amount of time in my jammies this holiday season. Tim came down with the flu, which he recovered from quickly, probably thanks to Tamiflu. Then, I got it, and a few days later, Olivia too. I gave her Tamiflu for a few days and she pulled out quickly too. I, however, did not take anything and it kicked my butt quite a bit. Was SO tired and ached all over. We were over it by Christmas, but we canceled our Christmas Eve family dinner here and did not go to my sister's on Christmas day. I was sure that at least Liv could still be contagious and it's just not right to expose everyone else. So, it was a very quiet holiday and, though I missed seeing my family, I have to admit it was nice. No rushing around, just the 3 of us watching holiday shows on TV. I made a roast for dinner. We stayed in jammies quite late, but got cleaned up and dressed for dinner and a nice little stroll down the avenue with the pooch. My internal time clock is all messed up, thanks to laying around so much and sleeping all different times of day. I've been sleeping late in the mornings and that is just unheard of with me. I am better now, but the fatigue of that flu lasted some time.

As usual, I have come to the end of another year with regrets. Mostly, I regret that my husband spends SO many hours working and that we don't get to spend a lot of time on adventures. That really stinks. I also regret not getting these huge chores, that have been hanging over my head forever, done.
I've really become the queen of procrastination. Of course there are the usual admonishments about not exercising and eating better too (read- losing weight). OY! I know that I have been in quite a funk for some time now. But, I have to really get these things done. If Tim goes back on treatment, I will have less time and be in more of a funk and be less apt to be able to pull these chores off. We did go for a drive, last week, out to a quaint, little town that we've been to before. It was all done up for the holidays and SO pretty. Like walking through a Christmas card. We also took our annual trek into the city before Christmas. Olivia wanted to go to the top of Rockefeller center. UGH. Elevators flare up my vertigo. This one goes 67 floors in 43 seconds. We got the sun and stars tickets so we could go back up and see the sunset and NYC at night too. It was cool, but gosh, that is a long way up. Olivia likes photography so that was her main reason for wanting to go.

In MM news, I have been named an official co-leader of our support group. I've been helping out with the group for a while, and do a lot of the e-mailing and posting announcements and such. Our head MM nurse runs it and is SO busy with work, many times she can't even stay for the meetings so I have run some of them. I love the people there. These meetings are important to me. It's really the only time I am around people dealing with the same thing I am. I fear that 2015 might be the year Tim has to go to battle with this darn disease again. It's going to be a year of tough changes, even if he doesn't. Olivia gets her license this year. Some friends already have it. I am petrified. People drive like idiots around here and the sheer volume of cars is insane. It is so scary to me to have my kid out there. I have dreaded this time forever. So, I am trying not to be overwhelmed with trepidation with this year, but it's hard. We are already looking at colleges for Liv and that's weighing heavy on the old gray matter too. I hated it when she was on vacation for a week without us last summer. Going away to college is going to be tough on Tim and me. These next few years will have a lot of change involved. So, I just have to try to live in the moment and not waste today worrying about tomorrow. We've got a year and a half left of high school times to enjoy.

So, I wish you all a happy, healthy 2015. I hope you will be able to live in the moment and try to tick a couple of things off that old bucket list too.

Cheers!