Halloween storms

Well, last year we had the freak snow storm, with the leaves still on the trees, which brought down a lot of them in NJ, including one that fell on our rental house. This year, we have hurricane Sandy bearing down on us. Tim just went and bought a generator yesterday. Losing electric for a few hours is no biggie. A few days, now that's a nuisance, and you lose all your food, have no heat, etc. Folks are preparing around here.

Fair warning: boob talk coming up. I have an appt. early Tues morning at HUMC's breast center. It's been an aggravating week of phone calls trying to get this all set up. They requested my mammo and sonagram from 10/8 and decided they see something in the right breast they want to check out too. Been having trouble getting my gynecologist's office to write up a script because they have 2 different places requesting different follow-up tests. So, unless they lose power and cancel my appt.,
or we have a "state of emergency" where the cops want people to stay off the roads unless it's an emregency, I will be having extra mammo pics taken of my right breast, sonagram on both sides now, and needle biopsy, if needed. Lovely. 4 years ago, when I had a scare after a routine mammo, it ruined my holidays. It played out for 7 weeks, with me not getting the good news until just a few days before Christmas. I backed my mammo up this time, but will NEVER do it in Oct. again. Breast cancer awareness month means I've been bombarded with it, constantly, right down to my daughter wearing pink stuff while cheerleading and the football players too. Is there EVER a good time for a breast cancer scare though? I think not. I've stayed relatively calm, because I don't think anything they've seen is super suspicious, but am definitely getting more nervous as the date gets closer and am not happy that they found anything, let alone, 2 things now, 1 of which the first place never mentioned. Enough of that.

I tried to make this blog a little more private but right away got facebook messages from friends that couldn't get on. I had to ask Phil Brabbs to remove our "myeloma Monday" bio from his blog because even though I had him take our last name off it some time ago, the photo, or something, was still causing it to come up in a search of Tim's name and that's not good for business. I am not real great with computers. I tried a new setting on my blog which says it will keep it from coming up in search engines. I dunno. I REALLY don't want to go private. My networking with other MM patients and caregivers has been a huge part of my coping system while dealing with all this the last 5 1/2 + years. I suppose I have shared some really personal things, but so have others, and it really is pretty cathartic for me.

Speaking of catharsis, it was just one year since Tim's family blow-up. Sad to me. His parents have come to a few of the games that Olivia cheered at. We are civil. But, they missed a year of their son's and granddaughter's life. I think all the time, "was it worth it?" To get such nasty things off your chest, to kick people who were already down, to have to hurt someone else to make you feel better than them, out of sheer self-esteem issues? Was it worth it? I thought Tim would soften over time. He hasn't. He, instead, realized how much stress his family caused in our lives and has seen the benefit of not having that stress anymore.He simply doesn't want to deal with it anymore. Ya know, there comes a time, unfortunately, in some relationships, when you realize that the bad outweighs the good by quite a margin. People RARELY change. You have to decide whether it's something you can cope with, or not, and just how much damage they're causing you. In this case, it was quite a lot. I've said it before, and the therapist that I no longer see is convinced of it; these people took themselves out of our lives because they did not want to deal with Tim's mm. Maybe it was a subconscious thing, and they didn't realize that's what they were doing, but it's what they did. I don't think they're liking "sleeping in the bed" they made for themselves, but, they should have thought about the consequences before they said the things they said. Some bells just can't be un-rung.

So, enough of that too. I'm hoping this week is not too damaging to our state and the people in it, and that my tests come out OK, and that I can get on with my life, once again. Back to the normal difficultness that it is. What can ya do? Gotta play the cards we're dealt, as Tim always says.

OOPS, I didn't even realize I had not updated on Tim's MRI of his neck. Well, the GOOD news is it is not the MM. I was afraid of a lesion or plasmacytoma. The bad news is he has some real orthopedic issues there, which include spinal stenosis, and neck pain may be a part of his life now, in addition to chronic back pain. We have to go see an orthopedist, but are getting my stuff out of the way first. His profession really beat the heck out of his body. May have even caused this MM too. Last night we saw our friend's brother at the football game. Tim did his wood floors a couple of summers ago. He is around 50 and retired from being a cop. I told Tim, he shoulda become a cop. I told him that 20-something years ago. It's a good gig. Retire by 50 or so, great benefits. Not saying it's without its faults, but overall, a pretty good gig in small suburban towns like the ones around here.

Blog help

Hey y'all,

I just found out last night that a decorator that refers Tim googled his name to get his phone number
and found my blog. She did not know about his MM before this. I have no idea how many times
this has happened, possibly costing him work, and don't know HOW it happened, since I don't use
our last name on my blog. I have not wanted to take the blog private because I don't want to lose
touch with anyone who reads/comments etc. I may have no choice. Anyone know how this could happen? And, if you come to check in and I've gone private, PLEASE apply to be a follower. I am
not a computer whiz and don't know how to set this up.

Just hate mammograms

They say, 'round here anyway, that after 40, you should have a mammogram every year. Scary thing to take on every year. Some of you may remember my last mammo fiasco of 2008. Maybe not. Reader's digest version. Mammo saw something, first radiologist hit the panic button. told me I needed another mammo and MRI of both breasts. Never even heard of MRI'ing breasts. Went to a new place, did follow-up pictures and that radiologist told me it was fine, dense breasts. My gyn was still hitting the panic button. I wound up in the hospital 5 or 6 days before Christmas having a sonagram on my left breast, after seeing a breast surgeon who said, "'lets just and get it done and make sure it's nothing." After realizing the tech was measuring things in my left breast, I felt sure I was about to be told I had breast cancer (this was at the end of a nightmare year, actually 2 years, for me) and I burst into tears when she told me it was water cysts and I was OK. I went back a year or so later and have not been since 2010. I went yesterday. What a disaster. Waited a long time to hear the results. This place keeps you there, sitting in your tiny curtained dressing stall, in a gown, waiting for the report.The girls says they need more pics of my left breast. GREAT. Takes 6 more scans, the last 2 being pretty painful. Then, wait again. Now they want a sonagram. I'm about ready to cry. I'm alone. Tim is at Liv's football game watching her cheer.I have the sonagram. The radiologist comes in with the tech and tells me they see 2 tiny complex cysts in my breast. He says they don't exhibit a lot of the things that look cancerous. He said they are perfectly round, have no calcifications, show no evidence of having their own blood supply and appear completely, neatly encapsulated. Says come back in 6 months for a re-check. I then tell him, "Look, my husband has multiple myeloma, we have a 14 year old daughter, are you sure that you are very comfortable with me coming back in 6 months, knowing what's at stake here." He said yes. They leave, after the tech tells me(even though she's not supposed to)" I've been doing this 17 years, I don't see anything here that worries me." I go to the bathroom, and get my shirt on. There is a knock at the door. The doc comes in, says he has looked again, and there is one thing he wants to check again, in light of my situation. They re-sonagram my breast, both of them. The one cyst is 3 mm, the other, 8 or 9. The larger one has one side that is slightly denser or something and he now wants me to have a guided needle biopsy just to be sure. He said he is still not very concerned but wants to be extra careful due to my situation. LOVELY. Well, I do tell them this so that nothing is overlooked. I know I risk this type of extra vigilance. I don't even remember the drive home(it's only a few miles) but not good nonetheless. So, after a night in shock, I have calmed down and am trying to just get on with it. Tim goes for an MRI of his neck tomorrow. Still hurting him after over a month and he got rear-ended in my car last week, making it worse. Not a bad rear-ending, but enough to make the neck worse. I have to sit in the same dreaded radiology place with him when all I wanted to do was run outta there the other night after a 2 hour ordeal there. I handle the stress of waiting much better than I did years ago, as I've said before. Not gonna change anything. Talked to my sis, who used to have cysts and she said it sounds just like hers.
So, there you have it; another hurdle and health scare in the mix. Gosh, am I sick of them. So, any prayers, good vibes, and well-intentioning are all greatly appreciated. I will keep you posted.

UGH

Yesterday, Tim had a check-up appt. I am always anxious about these, some times more than others. This was one of those times. He has had tingling in his legs and feet for several months and noticed he is sweating more(though in truth, we've had VERY humid weather in Jersey lately) I sat down and looked at his last 2 rounds of bloodwork and realized there are very slight ticks up in markers with very slight ticks down in blood cell counts. Nothing to worry too much about, but I wondered what this latest bloodwork would show. It did not help that Tim took the dog for a walk just before we left for the appt. and ran into a woman from PA who still visits here and keeps her apartment around the corner and she told us that her dad, who we know, was just diagnosed with stage 3 lymphoma 3 weeks ago. Something about having stuff like this happen around appts. that always puts us more on edge. Anyway, we are seeing the new doc now. Joshua Richter. Young, nice. He worked with Vesole and Jaggannath at St. Vincents in NYC before it closed so I know he must know his stuff. Well, unfortunately, those ticks continued in the wrong direction. His m-spike is .15 now. It was .08. It has been explained to me, in the past and again yesterday, that when it is this low, it is unreliable and always just an estimate, but I also noticed his Kappa free-lites, and therefore the ratio, ticked up a decent amount and I've been told in the past that that would be the first thing to show he
is coming out of "remission." While the numbers are still in range, they definitely are trending up.
I was bummed. He said this is nothing to be concerned about, that the blood counts can be just normal variations, a 2 mile run would raise his platelets and whites and all that jazz, and that the free-lites were still in range, so he is not concerned. Still said we could go 3 months between appts. I am not happy though. I think this is a sign that we are slipping out of the "eye of the storm."
Nothing to be done, I suppose, there is no way to prepare for this. I've had a chance to get my feet back under me, with this long period of stability. I was a wreck in '07 and '08. I realized this morning, that it would be very easy to go right back there again. A friend told me recently that I have learned things and gotten stronger in this time and thinks I will be more able to be strong. I'm not so convinced of that. I'm trying to remember to take it a day at a time. Trying to project or prepare for the future just produces angst. Tim also has had pain in his neck area for a month. Doc thinks it's muscular and gave us a script for a muscle relaxer. If it gets worse or does not resolve, then we will look at getting a CT scan or MRI. On the way out of the doc's office, I ran into a man who has not been to the last few support group meetings. He is not doing well. I gave him a big hug and kiss, and again when we left, but it's so sad to see people doing poorly. I know too many MM'ers in that spot right now and it's heartwrenching.While Tim and I were waiting to see the doc yesterday, there were 3 men there, all 40's, one a new patient. I thought, "so much for an old person's disease." Younger folks getting it all the time now. Tomorrow, I am dragging Tim and Liv to a cancer survivors celebration at Liberty State Park, which is across the river from the Statue of Liberty. Tim has never agreed to go to any of these things but Aretha Franklin is performing, as is Tim's doc I heard, so I told him we are going. Hoping the weather holds out. They're saying showers. I hope it's uplifting in some ways. I hope to meet a gal from southern NJ who I've only known via internet so far, as well as run into others from our support group. Sometimes I feel like life is "all cancer, all the time." Tim and I got a bit of a relief from that. It's still a hard life when you feel like you're waiting for the other shoe to drop. So, that's the update. Have to learn to adjust to this "new normal" again. Nothing stays the same. Happy autumn to y'all. Keep on truckin'.

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!