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!

Marlene

Before I talk about Marlene, I suppose an update is in order. I have finally rid myself of the pseudomonas bacterial infection in my sphenoid sinus. It took 2 weeks of Levaquin but it's gone. Unfortunately, my cough appears to be from something else, as it did not go away with the curing of that infection. I start on some kind of steroid used in a neti-pot type thing this week. Oh well, hopefully we will get to the bottom of that problem and I can get some relief.

As the holidays approach this year, it's been tough for me to be excited about them. Both of our families are fractured up. It's a shame but I asked Tim if he ever thought there would be healing in his family and he said "no". I am not surprised. As he has said many times, his family will never change. No matter how many friends they lose, they just keep on doing what they've always done and that's not something we want to be around anymore. We've been kicked while we were already down way too many times by these people. Then, to top if off, our kid, who has a nice group of friends, is now dealing with her best friend shunning her. And, all because Liv, as I advised her, stayed neutral in a mess that was going on between others, in hopes that it would just blow over. Now, I guess her BFF is ticked that she refused to sever ties with a few girls who had done nothing to Liv, but were not happy with the BFF. Honestly, you can't win. Reminds me of my sisters-in-law. If I refused to take their side in the immature argument they'd been in with each other for years, I was no good to them. Crazy.

Then, yesterday, I saw a facebook comment about Marlene. She did her auto transplant with Tim back in 2007 and was only 45 then, 52 now. She died yesterday and I was just devastated. I went up to my bedroom and cried. Another courageous, beautiful, funny soul taken down in her prime from this damned disease. I told Tim. He actually walked in the back door right after I read it and I was so upset, he knew something was wrong. I said later, "I don't know if I should even tell you these things but feel it's patronizing if you ask if I've heard from Marlene and I tell you she died 3 months ago." He said, "no, you have to tell me." But, there were several reasons I was crying and thinking about how petrifying it must be for him to have these people dying around him, from the same disease he has, just breaks my heart more. I also feel bad because it's been years since we got together. There were 4 patients going through transplant at the same time and we became friends and stayed in touch for a while. Met for lunch once or twice even. But, Marlene moved a bit further away, Carol died a few years ago, Jim and his wife life in PA, and, well, you know how it goes. You always think there's time to get in touch or see each other again. I didn't even know she was failing. Her sons got married and she looked fantastic in the photos. I'm just so sad. Tim said, "the holidays get harder and harder as we get older." He's right. So much going on, everyone you talk to dealing with family rifts. He said he doesn't blame Liv for not wanting to grow up. He said maybe some people have pretty good lives but too many have health issues, family problems and are losing people they love. Gets harder and harder to pull yourself up by your bootstraps.

Last week, I spoke at a mid-day, Advent service at church. Our Pastor does this thing at our New Year's Eve service where he invites people to come up and share how God worked in their lives this past year. He extended it to our Wed. services during this pre-Christmas season. Well, a kind deed that a complete stranger had done for me right after Tim's diagnosis had just come full circle recently. I met the man for the first time in Oct. and was able to thank him, again, in person. Just a few weeks later I found out he'd buried his 21 year old son this past spring, after the poor kid being dx'ed with a heart condition as a toddler and having a heart transplant. Here was this man in so much pain himself but still reaching out to be kind to others. So, I wrote a little sermon about that, as well as a few things that happened in church too. It was a small congregation, but, almost all of them were crying after I finished my talk, they were so moved. Pastor was moved himself, and he asked me to give the sermon again at a Wednesday night service so more people could hear it. So, I did. I read it this past Wed. night. The reaction was powerful and I am very proud of myself. Something sort of amazing happened too. My Pastor's wife is a very closed-off person. She rarely comes to church and has no friends that I am aware of. I've only had one conversation with her. Tim did the wood floors in their house so he's spoken to her a few times. She is very much a loner. Pastor's whole family has been in crisis for several years due to their oldest daughter's battle with anorexia. This daughter is beautiful and talented but struggling badly. The last story I shared in my "sermon" was about the day Leah(their daughter) and Pastor performed Amazing Grace for me in church just a few days before I was having my cardiac ablation 2 1/2 years ago. I bawled like a baby, I was so overwhelmed with their kindness. Leah has a beautiful voice and I love it when she sings in church.

After this service ended Wed. when I gave the sermon, I stood up to get my sweater on and Pastor's wife, Ann, is walking straight down the center aisle to me with her eyes overflowing with tears. She stands in front of me, looks me in the eyes and says, "Thank you so much for recognizing that in my daughter and saying those nice things." She is overwhelmed and I thought, "this woman needs a hug." So I hug her, hoping it will be well-received. It was. She hugged me back and we stood there hugging for a long time, she kept thanking me for what I said. We released and spoke for a few moments but there was a crowd of people waiting to talk to me about my sermon, so she went over and sat with Tim, calming down and talking to him for a bit. It was a proud night for me. This was a "bucket list" item for me and I was glad it was so well-received. But, I have to admit, the most rewarding part for me was that hug with Pastor's wife, who is a very troubled woman. We shared some catharsis together. Though we are both going through something different, both of us have someone we love dealing with a terrible disease. She told me she is afraid she is going to lose her daughter. It broke my heart. I am afraid I'm going to lose my husband too, so I can relate a little bit. I hope that I can get to know her a bit better now. She needs a friend, and I am willing to be one, if she's open to it. So, as Pastor told me about my sermon, everyone is going through something. The people who heard it could relate in their own way to what's going on in my life. And I've learned these past few years, that reaching out to help others is a way to heal your own heart too. You can feel so helpless when a tragedy strikes your life. Helping others where and when you can is a way to combat that feeling and lifts you up just as much as the person you are helping.

So, I am going to try to make the best of things this holiday season and look forward to 2015. We finish decorating our tree today, go to a candlelight, choir service at church tonight, and tomorrow we are playing hooky and going in to NYC for the day to see the tree, windows, etc. Gotta just make the best of it. Probably no better way to honor those we love that we've lost than to appreciate being alive and grabbing joy when we can.

Happy holidays y'all. Hugs to you from me.

Not outta the woods yet

Last Thursday, I went back to see my sinus surgeon in his office attached to Mt. Sinai. Well, apparently this follow-up was not the end of this whole sinus saga for me. Turns out, they cultured something called pseudomonas from the infection he took out of my sphenoid and it's a tricky little bug. The Augmentin he had me on was not the right one for this sucker (I was a bit dismayed that I spent 9 days on this strong antibiotic, when he could have put a call into me after the culture came back to switch it.) So, now I am on Levaquin for 2 weeks, and have to go back a week after that. If my post nasal drip cough is any barometer, methinks this one isn't working either, even though it's supposed to work for this bug. The Ceftin my local ENT put me on in August worked great, but as soon as I stopped, the cough/drip came back. I'm wondering if we can go back to that if this Levaquin doesn't work and because he removed all that thick stuff that was stuck in that sinus for so long, maybe it would work this time and kick it completely. (TMI alert) I will just have to stay close to bathrooms while on it. I hope I don't have to do a month on strong antibiotics. I did this surgery to avoid that and hence avoid risking C-dif. The doc scoped my sinuses again and drained them too. What a treat that was. OWEEE. He uses this rigid scope (read; long, thin, metal rod) and he's got that thing halfway through my head, it seems. They shoot this anesthetic up your nose first, it drips in your throat and tastes awful, and it still is an uncomfortable procedure. I just keep telling myself, "could be worse." I was so dizzy and spaced out from the procedure and the elevators, I almost fell over while waiting for a restroom downstairs. I will get to experience this lovely procedure again at my next visit. Joy, happy Joy.

MM news. Tim had his check-up 2 Fridays ago, the same week of my surgery. We met the new doctor that came to us from Mt. Sinai. Noa Byran, I think her name is. Nice. Young. Seems to know her stuff. Tim's m-spike went up more than the 1 or 2 hundredths that it has been going up. It went up .07 this time to bring him to .31. I asked her about MRIs. He has not had any bone studies in a few years and even though he did not present with a lot of bone damage with his MM, I don't want to take any chances that it's happening now, with his numbers rising, and we're missing it. He has back pain all the time from degenerative disc disease and his profession, so he might not notice bone pain creeping in. She agreed it was a good idea. Preferred a PET, but I would rather save that and not have him go through all that radiation and being shot up with the isotopes unless it was really necessary. It sucked to see a bigger jump. Not gonna lie. I'm wondering how much longer this respite from chemo is going to last. It doesn't look like much longer, but, still praying things go slow. I bought him curcumin. As always, he hasn't taken it. Got a collection of stuff like that. *sigh*

Family news: We saw the out-laws for the 1st time in 6 months the other night. They came to a home football game to see Liv cheer. SO strange. Have not seen them since my father-in-law made a scene at Liv's last softball game of the season and we both let him have it. It's really unbelievable how many events they have ruined for us over a span of many years, including our wedding. They are just miserable to be around and have no respect for anyone. I was glad to go 6 months, and longer would have been fine with me. Neither one of them have any control over their tempers and they're like loose cannons. My parents were at the game too, sitting with Tim and me. His parents wound up sitting 3 rows in front of us. There was no room on our bleacher when they got there and I made darn sure I had people on either side of me so there was no chance I'd wind up right next to them. I looked at the back of their heads, as they sat there alone, and thought, "you did this to yourself." I dunno, I can't even imagine going 6 months not seeing your own kid. And, he's sick besides. Whatever. My dad went down and talked to them during halftime. He went to high school with them. Tim didn't even go down to see them. He said a few words to them after the game, while I went over to talk to Liv, and they left. On my side of the family, I have not spoken to my older sister in several months. Have not seen her since she threw that tantrum in the middle of our kid's sweet 16 trip at the end of June. It occurs to me the amount of times she has said she was appalled at how Tim's family continually kicks us when we're down, and then..........Hmmm. She tore a page right outta their playbook. She found out about my surgery and told her husband she was going to write me a letter to try to patch things up. Apparently, she chickened out. I really didn't want the added drama while I was nearing my surgery date anyway. I just don't get people. I really don't. I have little patience anymore for adults who throw tantrums like children. The irony is not lost on me that she and her husband are my out-laws best friends now. They have the VT thing in common, as well as their selfish personalities. It is not that I WANT to hold grudges against people. I don't find anything fun about this, being angry, disappointed. But, how do you forget someone ruining something THAT important in your life? She knew what it meant to us. How do you ever trust that person again when they have shown themselves capable of doing something so darn rotten? My sister has always been selfish. It's a fact she'd have a hard time denying herself. But, this was just too much. Sadly, it changed the way I feel about her, and I believe Tim feels the same way. Sometimes I sit and think about the amount of people who have screwed me over in my life and I think, "maybe it's me" but, the truth is, though there were toxic people I had to take out of my life, I can't think of anyone who walked away from me. I'm not perfect by a long shot, but, I am a good friend, and sister, and daughter, and my in-laws have lost all their friends, and my sister lost her old friends too, due to her lack of interest in their lives. I guess a lot of people are just the "fair weather" variety and when the shit hits the fan, they don't want to be there for people. Sad, very sad. Our families are so fractured. My other sister had not been in contact with our whole family for several years now. Word has it, she and her long time boyfriend are getting married, and no one from her family will be there, not even her 2 kids. I just heard that my cousin and his wife are not speaking with my aunt, after a big blow-up, and she lives in an apartment they built on to their house! It's everywhere. It really is. It is so rare to see a family where everyone gets along and there are no rifts. But, as adults, I think people have to realize that you can't shoot off your mouth and say whatever you want. There are consequences and you just can't un-ring those bells. As the holidays approach, these fractures dictate where you go, who you see, etc. There are lots of families I know who won't all be together this year, and it's all because of people who were incapable of holding their tongues and said and did things that were just unforgettable. It really is such a shame and I find myself being so disgusted with it all lately. It boggles my mind just how selfish and lacking in compassion so many people can be. I can't even wrap my brain around what their thought processes are. Why would I want to?

Sphenoid sinus surgery.......CHECK

I'm home y'all. Surgery went well but was in recovery longer than planned. Walked into admissions at 10:45 this morning, got in the car for the ride home about 7 pm. Got home a little after 8. Surgery was only about an hour or so. My heart rate was a bit high afterward so I think that was the delay in recovery. I told them I puke up Percocet and codeine so the anesthesiologist said he planned to shoot my face up with painkiller after the surgery so that maybe I could get by on Tylenol post-op. It did not register to me that he probably meant lidocaine and so I did not warn him not to use the epinephrine type. This might have been the reason for the tachycardia. Me and eppy are not on good terms. Thanks for the good thoughts y'all. I am glad it's over and now just hoping I don't have any of the complications that can happen. It's a tough trek into Mt. Sinai, not horrible, but I've got hospitals all around me that would be easier to get to. A little afraid to eat right now, but, I guess I gotta put that toe in the water some time. I seem to have kept water and a ginger cookie down, so far.

Snout surgery

So, I have avoided having surgery until now. 49+ years. I have a date with a very nice looking doctor in Mt. Sinai hospital who is going to operate on a blocked, infected sphenoid sinus, which is close to my brain. Some backround: I have had a post-nasal drip cough for probably 20 years. It was almost constant until I started taking an asthma med (inhaled steroids) that it calmed down a little, but, it still is an every day thing. Temperature changes trigger it, dairy and other foods, perfume, hormones, etc. I am forever sucking on Halls drops to control it. Back in Jan. or Feb. of this year, I started noticing a click in my throat when I swallowed. I waited to see if it would go away, it didn't, and after we got through Liv's sweet 16, I went to my ear, nose, and throat doc. He scoped me (up the nose and down into the throat) and said he saw nothing but ordered a CT scan to be sure. The CT of my throat was fine but they caught this blocked, inflamed sinus on it. Doc put me on a strong antibiotic, which cleared my cough up beautifully, but irritated my IBS so badly, I could hardly leave the house for running to the bathroom. A follow-up CT showed some improvement, but the next step would be 6 weeks of this very strong antibiotic and steroids, with no guarantee it would work. Now, I have a wonky heartbeat and steroids could aggravate that AND, 6 weeks of diarrhea with a good chance of getting C-diff, was not something I wanted either. Bad enough if I got C-diff. It's very contagious and I could give it to Tim. So, My doc sent me into NYC to see a man who is supposed to be VERY good at what he does, which is guided surgery in this area. He was very nice, said he really thinks I need the surgery and said that if I have had symptoms this long, what's stuck in there is probably so thick, meds alone probably wouldn't clear it anyway and he plans to widen the passageway to the sinus to try to cure the problem once and for all. I am SCARED, folks. I do not tolerate meds well and this is general anesthesia. I already warned him that I puke from narcotics. He said his wife is the same way, and I will be medicated for that to try to avoid it. I think it's my wonky heartbeat and allergy to Demerol that scares me more. I have always felt a bit jinxed when it comes to medical stuff. Things never seem to go "textbook" for me. If something happens to me, I cannot even tell you what a pickle Tim and Olivia will be in. Our support system these days has shrunk considerably and I manage 2 houses, Tim's business, and all the paperwork that comes in and out of here, along with Liv's life, etc. Tim really doesn't even have a good understanding of his MM, as he never wanted to know and left it up to me to find out what we needed to know to make decisions. It's so hard to be a caregiver with health problems of my own. Tim tried to comfort me by saying that he would figure it out, but, I know that he would not be able to stay on top of running his business and do all the things I do. He would have to hire the business paperwork and management of our rental property out, at considerable expense. It's just too overwhelming to even think about. I was told that it's not good to leave this sinus infected, that it could drain intercranally, (sp?). I dunno, it's probably been this way 20 years. It's tough when you have a choice to make. This may never turn deadly, but, what if something happens during surgery. On the other hand, this problem has been a b**ch to live with and I believe may be a large part of the fatigue I have suffered for many years. Chronic sinusitis causes fatigue and many other things. Your body is constantly fighting an infection it can't get rid of. Today, I go to my cardiologist for a cardiac clearance for the surgery. On Nov. 3rd, the surgery is scheduled. I know as it nears I will get more nervous. I just want this done and behind me so badly. I'd like to put it off and not do it at all, but, another part of me also says, "Denise, do this while Tim is not in treatment and you're not dealing with his condition on top of it." He will also have his check-up that week. My surgery, Monday, his visit, Friday. Gonna be a tough week. He has been having night sweats lately, which makes me nervous that his MM is on the move and chemo may not be far off. That cliché about taking it one day at a time is so hard, near impossible really. I try to tell myself, "Denise, you are having SINUS SURGERY, that's all. No biggie." Well, I hope it works out that way. This doc is confident, does this plenty. But, I've only been put out for wisdom teeth and a colonoscopy. I'm a big old chicken. So, wish me luck, folks. This is a big one for me, made even harder that we have to haul in and out of NYC to have it done, but, I'm told this guys is aces, so, I'm not gonna trade skill and confidence for the convenience of getting it done locally, if there even was someone around here. I flat out told my ENT and this surgeon, "I have a husband with myeloma and a 16 year-old. We can't afford to have anything happen to me."

Marriage and cancer

Perfect together? I think not. Well, I am going to blog about this and try not to get too personal. 
Tim and I started dating when he was 21 and I was 20. Babies. We've been together 29 years now, married over 19. The good thing about dating a long time is, you know what you've got. There are no, or few, surprises. Sometimes, I think people get married too quickly. They wind up divorced and saying, "I didn't even know this person." They find out all these things after the wedding and decide they can't deal with it. That didn't happen to us. That's not to say we don't have our problem spots, we do, it's just that they were out in the open before we said those vows. Somewhere in those first 9+ years, we both thought "eh, I guess I can live with this." Now, if you've followed my blog, you may have heard me say that NOBODY LISTENS TO ME. It is a common theme throughout my life. Now, indeed, it's everyone's choice whether they want to listen to me or not. My problem is, that when certain people don't listen to me, even after I warn them of the consequences their decisions/actions will have, I get to suffer the consequences right along with them when they don't listen and do whatever it is I warned them not to do. This, over time, can drive anyone crazy. It is a hard position to be in. Nobody is always right, and I'm no exception, but I am right a lot of the time, and have even caught my husband warning my daughter, "you better start listening to her, she's rarely wrong." Too bad she doesn't, and he should take his own advice, because I've got two of them here, folks. They both have to learn everything the hard way and I get to suffer right along with them, and be the one to pick up the pieces, though, whenever possible, I refuse to bail them out, unless, of course, it's really serious or just makes my own suffering worse if I don't jump in to help. They need to be held accountable. Unfortunately, this problem may even be why MM entered our lives. Now, mind you, I have NEVER blamed this on my husband,(if ever there was a time you DO NOT SAY I TOLD YA SO) and he does not read my blog, (he doesn't Facebook or e-mail or any of that) but, 28 years ago, when he started working for my childhood friend's dad, who owned a wood flooring business, I started warning him about protecting himself from the chemicals. Shortly after he started working there, the boss said to him, "here, read the labels on these cans(the stains and polyurethanes). I supply you with masks, gloves, and a respirator, what you do is your decision." Well, as Tim was taught by his father, only sissies worry about that stuff. When Tim told me about this conversation, I read the warnings on the cans, and that's when I began begging him to protect himself. I told him that this was occupational exposure and he could very well wind up with cancer or other serious health problems. He shrugged it off, said who knew how long he'd even work there, complained the respirator was hot and uncomfortable to wear, and that was that. In the 80's, bleaching and pickling floors was all the rage. Within a year, Tim was suffering from sinus problems and severe allergies, which he never had, even when he was a landscaper. An older guy who worked there died of cancer. I do not know what kind and wish I did know now. Tim could brush that off as the fact that he also smoked like a stack and had been in the business when even stronger chemicals were used. I continued to beg him to protect himself. He ignored me. Tim refuses to believe his chemical exposure has anything to do with his MM. He's aware that it is a possibility. An aside here: wood dust is also implicated in MM and he has spent years inhaling that too. I do not force the issue. What difference does it make? He obviously doesn't want to think he did this to himself and why would he. He just says that this was what was in store for him and would have happened anyway. I recently "met" a woman on one of the MM facebook sites who has 2 men in her family that have MM and both worked in the family business doing wood floor re-finishing. I didn't even tell Tim and never will. But, it is VERY hard for me, that his habit of not listening to me resulted in something THIS DAMN BAD. Ya see, his MM not only ruined his life, he took out me and our kid too. Obviously, it is he who is paying the highest price, but, it's so hard not to be just a little angry, after years of this pattern playing out over and over, and, mind you, he STILL doesn't listen to me. OY! this was not the direction I planned to go with this blog post, but, to get back around to where I was going, cancer is hard on a marriage. Recently, Tim and I had a pretty bad argument, well, it was really a discussion, but he did something that really hurt me. No matter how many times I say, "don't do that, it hurts my feelings" he doesn't listen. I find it very damaging to our relationship and he just thinks, "eh, what's the big deal? I'm just kidding around." The last 7 years have found me in funks that have really taken me out at the knees. Oh, I put on the game face for the sake of others, but, there's no doubt I deal with a constant level of depression as well as angst about the future. It's REALLY hard when your own husband is not understanding and makes you feel even worse. I've talked to him SO many times over the years about these certain things he does. I could scream, it's just so irritating that I'm still dealing with it. When we had this talk, I could tell he felt really bad. He apologized and admitted he really screwed up. Then, about a week later, he did something else to me that I've told him a million times to STOP doing. I give up, I really do. For the most part, I consider our marriage a good one. We are friends, still enjoy each other's company. I have a lot of marriages I can compare it to and I would not switch with any of them. But, I sure wish I could make him understand that people have breaking points, where there is no going back. It's hard to argue and be mad at him. There is SO much guilt involved afterward. He has cancer for Heaven's sake. But, cancer or not, this is still a marriage, and one that is being put to a test that many are not put to. We have many other things that stress our lives too. His family situation has been a BIG stressor. The list goes on. I just wish that my own home was a place I could get away from that kind of thing. I wish that he would see that these are the memories we're forming. I was taken for granted before Tim had cancer. Now, I have devoted my life to him even more, and am taken for granted to a degree most people never experience. I'm not looking for a pat on the back for all I do, I just want some respect, decency, consideration. I'm not asking him to DO anything special, just NOT DO these things that really wound me and damage our relationship. I dunno, I can't wrap my brain around it when you tell someone something so many times and it does nothing. What part don't they understand? I'm sorry doesn't cut it when you do something over and over again. Marriage ain't easy, for any couple. It's work. But, when cancer enters the picture, really, all bets are off. It's a pressure-cooker. For me, I think, "our time is SO precious together, I want to   make the most of it." A few years ago, I saw a therapist for a short time, as I've mentioned here before. I went for grief counseling really, and got some advice about Tim's family. She said something that haunts me to this day. She warned me to be careful about fighting and arguing. She said that the guilt you may face some day over it won't be worth it. Well, I'm sure she has seen many people struggling severely with guilt if she's done her share of grief counseling. And I certainly am afraid of living a life destroyed by guilt some day. But, cancer or no cancer, this is still a marriage, and it's still hard, and he still pisses me off.

Sheesh, that old phrase "nobody said it was gonna be easy" is true. But for crying out loud, why does it have to be THIS HARD?!!!

I feel like I have to add this little quote from Moonstruck, since I could not find a movie clip of the scene. Truth is, I still love that boy to the moon and back.

Rose: Do you love him, Loretta?

Loretta: Ma, I love him awful.

Rose: Oh, God, that's too bad.