Worry

Do you ever stop worrying when your husband has MM? I guess worry has always been a part of my life. Wish it wasn't. Tim started complaining of tingling and numbness in his legs back in July when we were on vacation in Cape May. Said it had been happening for awhile. Just last week, he told me again. He has tingling that goes from his knees down to his feet. I went to the vitamin store and got the supplements that Dana Farber Cancer Institute recommends for PN. He hasn't taken them yet.
He hates swallowing pills and is not good about taking vitamins and stuff. I don't know what else I can do to help protect his nerves. PN is a big "quality of life" thief for people with MM, and this latest turn of events has me upset about that, and worrying what his next check-up brings. He also started having some real bad pain in his neck which is travelling up his head and giving him headaches. We're hoping it's just muscle related, but, of course, you always wonder if it has something to do with the MM. He saw his original MM specialist about 7 months ago and he let him stretch his 3 month intervals to 4 months. This makes me a little wary but his numbers were that good and he's been that stable. Tim got PN by the second cycle of Velcade, back in 2008. We took him off after 4 cycles, as it was becoming bothersome and his numbers were so low. Miraculously, he went into CR, on his own, within the next 2 months and has been either in stringent CR or stable with only a slight band showing up on immunofixation tests. I've always known since then that he is not going to be one of those MM'ers who don't get PN. MM alone can cause it, but many of the chemos used to treat it cause it too. I
was so glad when Carfilzomib got FDA approval, because it is the same type of drug as Velcade,
yet doesn't cause PN, either as much, or at all, not sure which. There is a chance that we would use Velcade again though, since it worked SO well for him, but we would try the tummy shots, instead
of IV delivery, which has been shown to decrease incidence of PN. We're in another sad stretch of time in the MM blog and listserv world. We've lost several MM'ers recently, including a woman who called herself, "Boogie Barb", who was a frequent poster on the ACOR listserv and lived more than 20 years after dx. Also, Dan from Colorado has been told he is at the end of his MM journey. He has been thru so much treatment and now needs blood products every few days and has 2 broken arms that they can do nothing about. SO, SO SAD!!!! Susie, widow of Hamada, from the UK posted some e-mails that were written between her and Susan, Dan's wife. 2 women, brought together by the fact that their husbands had/have MM, trying to support and console one another across the miles. I read this post and thought, "we're all just sitting here, holding our breath, knowing someday it will be our turn to be in that very desperate, excruciatingly sad place." I've said it before, don't know what's worse, a sudden death, where there is so much shock and things left unsaid, or having to watch someone suffer from a terminal illness and face their mortality head on. For the one lost, the sudden thing definitely seems easier on them. But what are we comparing here, 2 incredibly painful tragedies, especially when someone is taken down in their prime. As the last niece and nephew on Tim's side of the family graduated high school this past June and just went off to college this weekend, I can do nothing but pray and hope that Tim is still with us when Olivia reaches these milestones. Most people want their kids to stay young. I exhale with each birthday, thinking it's one more year down, that she still has her dad. No way to live, but it's how we are forced to roll here. We try to take things one day at a time, but it's impossible not to worry about what the future holds for us.
Liv goes back to school on Thursday. 4 years of high school, which everyone tells me will fly by. ALL the years are flying by. Time stands still for noone.This past year saw so many changes in her. Changes that Tim's family has missed due to this estrangement. So very sad. Well, not sure how to end this post on a happier note. The only thing I can think of is, I lost 4 pounds. Got more to go, but it's a start. Can't take much credit for it though. Happened due to appetite loss from being on and antibiotic, but, hey, if you're gonna have a bladder infection, might as well get something positive out of it. Onward.

And awaaaaaay we go

It has started. Cheerleading central is revving up 'round here. Liv has started workouts for high school cheerleading(she can run over a mile without stopping, DIDN'T get that from me) and last night was her first night coaching the little girls who cheer for the Pee Wee league. Some of the girls are our neighbors' kids so that is neat. They know and like her already. It's gonna be a good experience for her but I know these next months are gonna be rough on me. Let's face it, much of the responsibility falls on her parents, at this point, what with all the scheduling and drop offs and pick-ups etc. I am not ready for this but even worse, it has been 5 months now that I have been suffering from severe insomnia. My brain is really not functioning on all cylinders at all. Hard to get that far on your to-do list on 3 or 4 hours sleep. I've been forced to try to take naps during the day. Sometimes I can drift off, sometimes not. Gonna go to my gyn. for a check-up and see if this is all hormonal. Ticker-wise, I am still having issues there too. Have to change my blood pressure med again because the current one is aggravating my asthma too much. HATE trying new meds, but have to do it. I've been having palpitations like crazy and am not sure what is going on. My hunch is that is is hormones and sleep deprivation, but it is very unsettling. I feel like I have it worse since the ablation and that makes me a little nervous, like did they damage something in there or what. I can't laugh, get excited, cough or anything without triggering it. Even bending forward for some reason does it. My cardiologist put me on a halter monitor for 24 hours and would you believe it hardly EVER happened then. Isn't that always the way? It was like my heart said, "NO REALLY, I'm fine!" as soon as they strapped it on. It did happen mildly a few times and it was nothing but some benign extra beats but still, I wanted to get one of the bad episodes on there, and even tried to force one, to no avail. Oh well. Anyway, life
is moving along pretty much as usual. All the same stuff going on. I'm not organized and always feel bad for that. Balls are getting dropped here and there and I feel guilty. I still can't seem to get myself motivated to do the things I've been trying to motivate myself to do for years now. I think it's probably a combination of depression and fatigue. Trying to gear myself up to hitting this all hard and heavy as soon as school starts and I don't have Liv around all day needing rides here and there.
So that's about it. Vacations are over. Summer is winding down and went fast as always. Hope you're all enjoying your summer. Stay well.

Birthday bloggin'

We're up in NH for my birthday. Not as good a trip as we've had in the past. Thought I'd compromise and book a house near the beach, 'cause even though we'd done our Jersey shore thing, Tim can't get
enough of the beach. BIG mistake. NH has 18 miles of coastline. I grabbed a house right near the most popular beach resort. This place is MOBBED and we can't get parking anywhere. Luckily, we can walk to some stuff from the house. But, there are TOO MANY PEOPLE here. Here's another thing, I rented a pretty nice place, as rentals go. All renovated.Very clean.
Half of a duplex. We get here last Sat, and there is NO  A/C. Now, being a Jersey girl, we don't even
think to ask, 'cause we attribute the "NO A/C" thing to only 3rd world countries and maybe Santa's house. Are ya kidding me here? Looking around, most of the homes do not have any a/c. Now, we do
have ocean breezes, and it generally cools a bit at night, but it has been a rough few nights and I am hot flashing away, to boot. No ceiling fans in the bedrooms, just the living room and dining room.
NOT fun! And we brought the pooch, so it's not like we can even bail and go to a hotel. JEEZ! Oh well, they can't all be great vacations. This year, it seems to be the pattern. I don't have a clue what to do today for my birthday. I WANT to go buy a sports car, but I am resisting the urge. I've felt a need,
lately, to get back to the ME I used to be, not this old, boring, overwhelmed woman I've become. Tim got me(read I got myself but he was there)this laptop for my birthday so no more being out of the loop when I'm away.Not sure if that's a good thing but since there's not much to do and I am up at 4 or 5 am, while everyone else around here sleeps forevah, it's passing the time. So that's the news from
Hampton Beach, NH. Well, time to find something to do. I'm so tired from 4 months of insomnia, I could just lay around and sleep!

Lazy days of summer

Well, summer is scooting by, as it always does. My daughter's social life is much more active, as she is old enough to go "downtown" with friends by herself. It's costing me a fortune. Living just a block from the main "Avenue" her friends come here, then go there, eat lunch, get Starbuck frappachinos,
and generally just spend money like it grows on trees. I do nothing but run a taxi service to friends' houses, the mall, and hand over 20 dollar bills these days. My kid is turning into a young woman, right before our eyes. Scary,
astounding, and miraculous all at the same time. So many people have commented to us about how pretty she is and how much "trouble" we are going to be in with her that Tim said the other day,
"damnit, why couldn't we have had a boy." He wouldn't trade her for nuttin', but it is frightening.
I saw her for the first time (for more than a glimpse) in a bikini the other day and the only thought that came to mind was, "oh crap."
Anyway, as for Tim and I. He is very busy, as always. Just dog-tired from working so hard. Wishes
he could step back more but finding help is tough. We just hired a kid, the boyfriend of a girl who lives down the block. Nice kid. We were so impressed with how he started out. Now, the kid has days when his brain does not show up and he's useless. First excuse was "I kinda have ADD." Now, he tells our other employee, "I kinda have depression." Ya know, if it's a medical thing, we'll try to work
with him, but too many times, you find out these kids are popping prescription pills. He recently told us his brother just kicked a habit of them, and that sent the red flags up about him. The bottom line is,
he is a danger to himself and Tim and Alan if he is that spaced out around power tools and such. I hope it works out, but I'm not holding my breath.
As for me, I am struggling with insomnia. Started before Easter and I just don't know what's going
on. I sleep a few hours and then I'm up. I am so exhausted I have to be careful about driving and feel
like heck most of the time. Thinking it's just hormones but really debilitating at this point. My brain
has been fried for so long and it's hard to accomplish much around here like this. I am still working with my docs on BP meds. Switched to a different type due to side effects. This one is working well but then started making me feel really bad. We dropped the diuretic part of it, and now I'm hoping I can stay on it. It is aggravating my asthma, so I'm back to inhaling steroids, but I have to be on something, so we sleuth away until we find the magic pill. I just booked a week in New Hampshire. Grabbed a vacation rental duplex a block from the beach in Hampton Beach. We can bring the dog.
Looking forward to it. LOVE NH. Liv was just offered a job coaching cheerleading for little girls. It is going to be a CRAZY fall as she is consumed with her own cheerleading practices for high school cheerleading and then these practices for her job, then 2 football games to cheer/coach at every weekend. We will be running like crazy from mid August to the end of Nov. But, this kid needs to learn responsibility and I think this is a good opportunity for that. Anyway, that's the latest. Oh and MM, carfilzomib was approved!!!! SO glad about that. Now, scientists, please get to that one that is going to CURE everyone with MM. Please, we are losing such wonderful people to this damned disease. WE NEED THE CURE!

Happy summer y'all.

Vacation?

Well, I'm still here. Just got back from Cape May today, and had some computer issues before I left, hence the lack of posts. I am recovered from the ablation, physically at least. It's been a tricky few weeks in other ways. I had a couple of weird, fainty episodes, and am hoping that doesn't become a habit. I went back on BP meds while on vacation. For some reason, my BP was really high and it could not wait until my next doctor appt. where I hoped to get a more tolerable med, since I've had a few reactions to this one. This 4th of July week in Cape May is always something we look forward to. We go with my parents. This past week came with some wrinkles, though. Reality follows you where ever you go.
My mom's memory is getting worse. It's always sad to see as things slip further from her but I had a very painful interaction with her, the first night we were there. It seems that she forgot that Tim isn't cured, and still has MM. She burst into tears and it was like seeing a child cry. She had to go into her hotel room to collect herself before Olivia saw her(thank goodness she was engrossed in her IPOD and had the earplugs in.) My dad and Tim were just pulling into the parking lot with dinner from a take-out place. She collected herself but her eyes were bloodshot through dinner and she could barely look at Tim the whole time. VERY upsetting and not a scene I will probably ever see erased from my memory. Then, the next morning, before Tim and my dad hit the golf course, Tim told me that his PN in his feet seems to have returned the last few weeks. He said he's had numbness and that "fallen asleep" feeling for awhile now. I intend to look up those Dana Farber supplements  and get him on them. What else can I do? SO, the 6-day trip started off with a whole lot of sad. I did my best to recover and make the best of it but my mom is shrinking her world. She did not make it to the beach even once. She is afraid of having an asthma attack. I had no idea that last year's trip was going to be the end of an era for us with this vacation. Things change. Nothing to be done but roll with it. I have learned to "let go" more and this is what I attribute my better handling of stress these days to. Even with my ablation, I thought, if it's God's plan to take me outta this world, not a lot I can do about it.

Life is not easy and getting old definitely ain't for sissies. I feel awful for my mom. This was her worst nightmare. But, we just have to deal with it the best we can. Some days, it gets really hard to find those silver linings and blessings. Too much tough stuff going down these days. I feel like I am forever picking myself up, dusting myself off, and trudging on. But, I will. Got too much to do to get all bogged down in it. Here's hoping the rest of the summer has some good times in store. I sure could use some.

Cardiac ablation

Tomorrow morning, I check in for a cardiac ablation. I'm amazed at how differently I handle stress these days. In years past, I would not be able to concentrate and I'd be a nervous wreck leading up to something. Now, I put off the worry until that day, and I guess I have too much to do to sit around obsessing. I am hoping that the process is not too bad. One doc said they'd put me out, the one doing it tomorrow said I'd be awake for most/all of it. I think I like the PUT ME OUT version better but, he's the boss. I'm looking forward to having this in my rearview mirror. I am really hoping that it works and takes care of this problem, once and for all. This black out and fainting stuff ruined my life for MANY years, and though you can't "cry over spilt milk" or change anything, the more I hear how common this is, the more aggravated I get that it was not diagnosed so long ago, when I first sought answers. I just spoke to my neighbor, who is giving Liv a lift to school in the morning and her son has had similar problems and is starting to have some of the same tests I had years ago. I told her, "I'd get him to an electrophysiologist." Wish someone had told me that all those years ago. So, wish me luck!

Yesterday, my pastor, knowing I've always wanted to hear his daughter sing "Amazing Grace" (she has a beautiful voice) had her sing it to me yesterday, during church service. He sang with her and they both played guitars. This was unexpected and I cried through the rest of the service. Such a nice thing to do for me. He said a prayer with me, as I received communion, and I was so touched by all this, I bawled all the way home. I am blessed.

On a not happy note at all, I have not posted about Paula. Words fail me when I try to explain Paula, but most of you already know her and understand that. I cried like a baby when I read that she'd died. Another bright light extinguished by this damn myeloma. 42. I mean really! 42 years old.  I will never be able to wrap my brain around things like this. She was so brave, so darn funny, right up to her last post. She had e-mailed me privately a few weeks ago, asking what I might know about the condition she'd gotten from the MM (she'd seen me comment about it on another blog some time ago) and she apologized for "laying this on me" and was more worried about her beloved Bernard than herself. Really, I just can't seem to find the words to describe how awesome she was and I saw that through a computer screen. I'm sure she was absolutely mind-boggling in person. I so wish this woman was able to stay here. What a huge loss this is, to so many people. We all got ripped off, but of course, she did most of all. My heart goes out to Bernard (and Buddy too.) I wish them God's peace and grace as they move forward from this hard, hard time.

I miss you Paula, and I will NEVER forget you! xx

Tough week

This week, I learned that Sean Tiernan, from the UK, died of MM. It is sobering, scary, and depressing to know how fast things can turn. His brother, Nigel, who was his donor for his allo, told us on his blog that it was pneumonia that was the culprit. From what I understand, pneumonia and kidney failure are the top 2 things that take an MM'ers life. I would think that sepsis is probably up there too. Sean was an MM'er whose disease refused to back down, to whatever they threw at it. I am always just ever so slightly comforted though, when I know someone has had an allo transplant, when chemo was failing them. At least, you know they left no stone unturned in fighting this damn disease. I know a lot of people are against allos, but after meeting people, in person and on the internet, who were saved by them, had long remissions, and in a few cases, were cured, I think they are a useful tool, especially when chemos are failing and options are few. I feel awful for Sean and his family. I know this is a huge loss for those who loved this special, dynamic man. In his last post, he talked about driving his bright yellow car, and how it cheered him up. I intend to wear bright yellow on the day of his service to pay homage to him. I admire his attitude and fighting spirit.

Things did not go well for our family this week, either. I had another episode of SVT and Tim rushed me to the ER at 6 in the morning. This one was slower than the last and I used some of the techniques they told me about to try to stop it, and after coughing repeatedly in the truck on the way to the hospital, I broke the arrhythmia. I decided to go to the ER and get hooked up to an EKG monitor just to be sure I was out of the woods and that wound up being a bad decision. My EKG was abnormal and they thought I'd had a heart attack. They gave me aspirin, more BP meds, and asked me questions about pain or vomiting, and I knew where they were going. They were about to rush me, by ambulance, to their main hospital(this hospital is being taken over by the one Tim uses for his MM, but is not fully open yet, just the ER and a few testing labs). Luckily, the doc checked my EKG from their records, from when I wound up in their main ER 6 weeks prior, and saw that my EKG was abnormal then. I think my EKG's have always been abnormal, least that's what I was told, but am unsure if this is a new snafu, or what.
I think I'm gonna have to walk around with EKG strips in my purse 'cause this sets off alarms every time and the docs scare the heck out of me. They then saw something new in my heart on the chest x-ray and decided to do a CT scan, with contrast, to make sure I did not pass a pulmonary embolism into my heart. ARE WE HAVING FUN YET?! I'm thinking, "it was SVT again, just send me home!" When all was said and done, I went home with orders to get back to the electrophysiologist the next day, and a HUGE, ugly bruise at the IV site.
I saw the head of the electrophysiology practice the next morning, nice guy, who said it's time to get going with this ablation procedure. Told me my risk of walking around like this is much higher than the risks of this technique and he does not want me going on vacation before it's done. OKEY DOKE. So we are setting it up for this month. Possibly the 19th. I am a bit more nervous about this SVT business, because this one was sparked off after one of my little skippy heart beats and that happens to me ALL the time. I'm also on a BP med that is supposed to stop arrhythmias, so it's a bit disconcerting that this still happened, despite that. The good thing is, I realize this procedure really is not a choice for me, and I HATE making scary decisions. Also, this doc explained things even further, and told me that if this thing is what he thinks I have (something called a bypass tract),
they will be in a safer area of my heart to fix it and the risk of damaging the good electrical nodes, and needing a pacemaker then, is pretty much non-existant. That's GOOD to know. The hardest part is upsetting my kid. That poor girl has seen way too much, in the way of medical scares, and I had to wake her up, tell her I was going to the ER, and she had to get ready for school in an empty house, and call her friend to see if her mom could give her a lift. I drive this friend home from school everyday,(her mom works) so that's not an issue, but I so wish Liv's life did not have to be so hard.
Last week, she called me into the living room. She was watching "Say yes to the dress," a show about picking out wedding gowns, and the bride-to-be's father has MM, and amyloidosis. He walked her down the aisle, then married them(he is a minister) and then spoke about how glad he was that he was still alive for her wedding. CR**. I told her that having Amyloidosis is pretty bad(though in truth, I know people doing very well with it, it depends which kind you have) and so kinda hinted like THAT was the deadly part. OIY! The older they get, the harder it is to hide things from them.
Anyway, the upside to all this heart stuff, is that I have had fainting spells and heartrate issues since I was about 12. It only took 35 LONG, screwed up years, but I think they finally have it all figured out, and I am hoping it will all be a thing of the past, once this procedure is done. I just have to believe that these scary episodes were God's way of getting me all fixed up.

For now, we are still soldiering on, just sporting a few "war wounds" it seems.