Trying to find peace and joy

Fair warning: This is not an uplifting post.

Well, I must say, this holiday season has been tough. I am trying to find that whole "Peace, Joy, and Goodwill toward men" thing but, boy, is it elusive this year. First, so much of my state has been devastated by hurricane Sandy. The economy is worse than ever, and for once, even Tim is slow.
Hope that turns around after the new year. This fiscal cliff thing, the election, and all the bad news swirling around, I think, has just zapped consumer confidence. This shooting in CT it the worst of it though. Those poor people. I brought Olivia to school on Monday and there were cops everywhere. Then, some senior in our school made some kind of threat, was arrested, and there are even more cops at our school every morning now. JEEZ, it's just so sad. Not fun to be a kid these days. That town in CT is only about 70 miles from here. We've driven past it countless times, as it is right off the highway we take when we go to VT or NH. Horrible that our kids go to school with this fear now. I wonder if Olivia will graduate highschool before we see metal detectors installed in the school.We went into NY city on Wed. to see the show "Elf" and the Rockefeller Center tree, windows, etc. It put us back into the holiday spirit, only to come home and find out later that night about the threat in our school and how it had been put on lockdown right after school let out that day. I dunno. What is wrong with people?
This psychologist on TV said that people blame their problems on others, don't take personal responsibility for their own words/actions, and then take revenge on others because they are so miserable. Sounds like my out-laws. It's true though. So many people blame everyone else for their
own issues and never look at themselves. NOT good. Went to an MM support group meeting on Thursday, which was also hard.
One woman, who has been in remission for years now, just told us her husband was dx'ed with advanced esophageal cancer. She is beside herself. Dang, bad news everywhere I turn. I just got off the phone with my younger sister. Her family is dealing with flu and colds, and has been for some time. Our Christmas celebrations may fall apart now, as we may have to stay away from them, and just started spending Christmas at her house after last year's falling out with Tim's family. So, it may
be jammies, TV, and Christmas Eve leftovers for us on Christmas day. Oh well, As usual, I have to dig really deep to find those blessings, but they're there. Always. We're gonna make the best of it, even if the three of us spend the day home. Good thing we enjoy each other's company. I thought about going back into the city and catching the Christmas spectactular, or trying to find a soup kitchen to volunteer at. Knowing me, I'll be beat from doing Christmas Eve and just want to relax.
Oh well, hope your holidays are happy. I'm gonna do whatever I can to get there. Hey, things may not be perfect but..................IT AIN'T THE END OF THE WORLD, RIGHT?????!!!!!

Them crazy mayans.

The girls are alright

So, after over a month of this mammogram stuff hanging over my head, today was the big day. I am
happy to say my boobs are fine. Thanks be to God! Due to hurricane Sandy, my appt. for 10/30 was cancelled. Today at 9 am was the new appt. What a hard morning. It took over 3 1/2 hours of testing
and waiting and worrying. Women all around in gowns feeling vulnerable and scared, saw one woman wiping tears away. As soon as I sat down in the waiting room of gowned women, a commercial comes on the TV about breast cancer and not finding it in time. I said, "great, we all need
to hear this right now." One woman replied, "what timing." There was a woman around my age there
finding out if she was having a breast cancer recurrance. A woman she knew came in and told her that she was dx'ed with it too. I looked around and thought, this is crazy, God gives us these things to feed our kids and we're being poisoned by them. Someone told me recently the odds of getting breast cancer are now like 1 in 7. Just nuts. Is it the deoderants? It has to be something we're doing. And why is is worse in developed countries?  I have tried, and will renew my efforts, to use aluminum free deoderant, but I can tell ya, it's not easy. Haven't found one yet that really works. Seems like you can have healthy underarms, or friends, but not both. Who wants to go around stinking all the time?
So, that is the update. I feel blessed, grateful, and proud of how I handled it. Sure I was nervous,
but as Phil B. says, I went in and dominated today.
Happy Thanksgiving to y'all. I have a lot of things to be thankful for, and the result of this day is certainly one of them.

XO

Hurricane Sandy

Well, it's Friday. Olivia STILL doesn't have school. Sandy packed a whallop for our area, mostly
in the form of very high winds and trees down everywhere. Pines were the worst. Their roots do not
go deep into the ground and they don't lose their foliage, so the wind catches that and brings them down. My out-laws lost 3 huge ones, one of which is on top of their house and probably would have gone through it if not for the trees right in front of their porch that "caught" it and broke its fall.
It's a mess here but the shore areas are destroyed and I have a hard time even watching the news because it is so darn sad. The expense of this is going to be crazy, for all the states involved and our government. We only lost power for 2 days and Tim bought that generator on Friday, which we only ran for a few hours at a time, but it kept our food cold, our house and water warm and I can't complain, AT ALL. It also got my breast tests cancelled. I'd love to get it overwith but was pretty
nervous too so can't say I was bummed to have it cancelled. I have not been called by the scheduler yet to re-schedule it. The gas lines here go for blocks and blocks and who knew that the best decision Tim would make would be buying a generator that runs on propane. He filled both tanks before the storm, and when one ran out, he drove right up the street and got it filled with NO line at all. People are going nuts out there. Tempers are high. Having dealt with my own health issues for so much of my life, and now Tim's mm added to that, I just don't get my knickers in a knot about this kind of stuff. It would be different if I lost my house and contents and was displaced for a long time, but, honestly, to hear people whine so badly about losing electric for 2 days, REALLY? People died out there, a woman had her 2 and 4 year olds ripped out of her arms in a flood and they drowned. Folks lost everything and won't be able to go home at all. I guess I just know too many people fighting for their lives right now to get crazy about it. Olivia had a few friends over for a campfire Wed. night. We walked them down to Starbucks and I took the dog. While they
were inside, a couple walked up to meet my dog and we got into a conversation. They were retirement age, live in a town a few miles away, and came to walk our "avenue." Their house was cold from having no heat. The woman's name was Sandy and she started complaining like mad about the storm. At one point, I just said, "my husband is a cancer patient and I know too many young people, with kids, fighting for their lives right now, I just can't get too upset about this" As soon as I said that about Tim, her husband raised his hand in a "me too salute." Turns out he is dealing with a recurrance of small bowel cancer and his wife then admitted to me that this caregiver stuff is just killing her and she is a wreck. Tim came out of Starbucks and the kids were around the corner drinking their sugar-laden drinks and we had a long conversation with this couple. So much in common, but when I said something that had even the littlest hint of faith involved, she said, "ya see, you have that, I don't, I'm Jewish, but a heathen, I don't believe in any of that afterlife stuff. When my mother died and my sister said,"she's with dad now", I said, "no she's not, she's with the gophers."
I found this to be really sad and thought, "no wonder she is having such a hard time dealing with this." She even said then that she knew that it was making it harder for her. I dunno, it's not that it takes the pain, fear, and sadness away, but I guess in some way, it gives one a little comfort to know
that someone has a darn plan in all this and we'll all see each other again some day.When it was time to go, we'd just gotten word that our power was back on. I felt like I knew these people and we should be exchanging phone numbers, but then thought this was just another chance encounter with people living with cancer. They're everywhere, so the "chance" part of that is not that surprising at all.
Well, my heart and prayer go out to so many that were devastated by this storm. Us Jersey folk just love our "Jersey shore" and it's SO heartbreaking to see it wiped out. It will be rebuilt. It has Ya gotta be tough to live in Jersey though, and we'll "dominate" this, as Phil B would say.

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!

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.

Ticker update

I went to an electrophysiologist on the 15th. I have to say, I REALLY liked this guy. Very calm, confident, and he took his time, making sure all my questions were answered. As I watched him speak, I'm thinking, "who does this guy remind me of?" I realized he looks like my brother-in-law. The good brother-in-law. Anyhoo, this is what he said: I have an extra electrical pathway in my heart. He said I've always had this. He said that this condition, and the neuro-cardio syncope, have probably been irritating/triggering each other all along. I was 19 when I started seeing doctors trying to find out why I had tachycardia and fainting spells. I am almost 47 before the whole puzzle is being figured out. My life would have been VERY different if they had put all this together years ago. Anyway, he recommended an ablation. He said that normally, in a person my age, they would just go with meds, but he did not like that my heart rate got up to 256 bpm and said that that can definitely render you unconscious(it almost did) and this is not something you want to happen on a plane or on vacation when not near a hospital. He told me some of the risks. 1% of patients wind up with damage to their normal electrical system and you wind up with a pacemaker for the rest of your life. Well, that would suck. In some people, it doesn't work all the way and they have to do it a second time. But he's confident that this will be a "knock the ball out of the park" procedure for me, and well worth it. It's actually his partner that he recommended do the surgery. He said he does LOTS of them. He said the other condition would probably improve after this ablation, and that, if not, they have medication for it that helps. But the electrical issue would be cured. I think I'm going to do it after our vacation to the shore July 4th week. I'm pretty calm about things now. He didn't seem to agree with my cardiologist that this was as deadly as he'd said it was. A woman from our MM support group meeting, 2 days later, told me that her husband had this done and that it was a piece of cake, and he'd been fine ever since. Another wife has this same condition and she was put on cardizem and it never happened again. This new doc said that the BP meds my cardiologist has put me on would help stop tachycardias, and my cardiologist had told me that. But, it's not as foolproof as going in and cauterizing the bad spot in my ticker. So that is the scoop. I have to try not to get myself riled up, in the interim. I have always noticed that big shots of adrenaline screw my heartbeat up bigtime. But, so much for staying calm, 'cause here is what happened to me today. I went to the post office, a 2 block walk from here. Took my Lacey puppy. It had rained earlier. While outside the post office, I stopped over on the side of the sidewalk(a wide walkway, our town gets a lot of foot traffic) to get all my mail together. I dash into the outside area of the post office and slip them quickly in the slot and dash out, 'cause I have the dog. Well, this guy, I'd say he was in his 30's, walked past us and I never saw him coming. Lacey jumped up to say hello and her paws hit his khakis before I could pull her back fast enough. Now, I ALWAYS make sure my dog can't jump on anyone. Some people come up and welcome it, but that is their choice. I use a VERY short leash for walks in crowds. I don't let her bother anyone. Not everyone wants puppy kisses and such.
I quickly said, "OH I am SO sorry. I did not see you coming," in an extremely apologetic tone. He walked a few steps, saw the damp, dirty footprint, and said in a really nasty tone, "THANKS!"
I threw my arms out and said, "She's a puppy." and he says to me "F*** YOU!" as he is crossing the street. Now I am mad. I said, "If this is the worst thing that happens to you today, then you're pretty lucky!" I walked home just amazed that this just happened. Sometimes, I HATE living in NJ and I have to ask here,
IS THERE ANYONE LIVING IN THIS STATE WHO IS NOT ON BLOOD PRESSURE MEDS?!!!!!!!! I mean, honestly, it was unintentional. I apologized quite heartily. I didn't see the dude coming! I go to take a little stroll to town with my doggie to run an errand and THAT is what you get. Pass me my calcium channel blockers, PUH-LEASE!

THAT'S IT!!!!!!!

Today I went back to my regular cardiologist to have my BP checked. Still too high so he is upping the meds. It's weird 'cause I get some lovely readings, like 120/78, but then still get some bad ones 140/100 or so. Guess what it was in the doc's office? Drum roll please.....180/110. How do ya like them apples?!
Talk about your white coat syndrome. Wonder what it would be at the hot dentist's office? ;o)  But, I digress. Anyway, the nurse took it when I first got in the room, and after the doc came in and spoke to me for a bit, he went to take it himself and I laughed at him. I said, "You can't think this will be lower with you here." He finished and said, "You're right, it wasn't." I can't quite figure this guy out. I know I like him better than some of the other docs in this practice but he has this way of "checking up" if the conversation gets even the least bit friendly or personal. It's so rare to see even a hint of a smile on him. The man needs a little animation. The good news was that I came right out and asked him if this ablation procedure could cure all this irregular beat and rhythm stuff I've had with my heart forever, and stop the blackouts and fainting spells that ruined half of my life. He said that it definitely could. I was
really glad to hear that. What a blessing to not have to think or deal with all that anymore, if that is indeed the case. Well, I'll know more on Tuesday, I suppose. Now, back to my blog title. Today on facebook, a woman from St. Louis posted a saying and it was a SUPER LIGHTBULB MOMENT for me. It said,  I DIDN'T LOSE MY MIND, IT GOT SCARED AND RAN AWAY. That's it folks!!!Lorna, did you hear that? That is what happened. We haven't lost our minds. They just got spooked when the sh** hit the fan and ran off on holiday for awhile. Phew!!! I feel so much better now.

And speaking about things that make your heart go pitter-pat, check out the dude my sis was standing in line with in Disney. She snapped off a few pics, solely by accident, of course! *wink*
And, the tat on his arm says USMC......YA THINK?!!!!
Disney is a magical place!  ;o)

Moping but coping

I got a phone call Wed. night from my cardiologist,  just as I was getting dinner ready. It was not a great
conversation. It seems that arrythmia that put me in the ER a few weeks ago, was not as benign as was
originally thought. He got the EKG strips from the EMT's that treated me in the ambulance, while I
was right at the curb, in front of my house. My heart rate was 250 bpm. I knew that but I don't think he believed it until he saw the proof, himself. Yes, that's about 4 beats per second and NOT a nice feeling, I can tell you. My doctor seems to think I have an electrical short circuit in my heart and it has to be repaired. He said, "you could keel over from this." Just freekin' great. Not enough that my kid has one parent with a life-threatening illness, she hit the jackpot and has two. I had to make an appt. with an electrophysiologist for the 15th and get all my heart-related medical records sent to him. The good news is that I can have this "ablation" procedure done and it will be cured. I will not have to spend my life worrying that this could happen again. It won't. But, I, of course, am very nervous. They go into your heart with a catheter and map out your electrical circuits and find the one that is not being a team player and cauterize it. I really don't have much of a choice, so I suppose that takes a LITTLE bit of the angst out of it. My doc said I cannot walk around with this. (Gosh, I really wanted to tell him to ZIP IT.)
He said I've probably had this since I was born, and what I am praying for, is that this is what has caused my irregular heartbeats all along, and the fainting spells that changed the course of my life, and that all of this will be cured by this procedure, if in fact my doc is right and this is what it is. This phone call put me into a funk, but I am going on with things. I've gotten much better, over the years, at dealing with things. I used to worry myself sick, and many times it was for nothing, false alarms, etc. Now, I just try to get on with it and let the pieces fall into place. Maybe, it's just a "giving up" of the notion that I am in control. I said to myself the other day, "if God intends to take me, there isn't a darn thing I can do about it." I sure hope that is NOT his plan though and I do have to take care of whatever this is so I can stick around here. I looked up the practice that my doc recommended on the internet. There are 4 doctors and only one was given high praise by patients, in a survey. When I made the appt. the woman asked me which one I wanted to see. I learned a long time ago to ask nurses, or a doctor's employees, which one they themselves would use because they KNOW these doctors. They know who they would trust with their health and are usually happy to share that with you, if asked. So I told her, "Look, I have a husband with cancer and a 13-year-old. Checking out is not an option here. Which one of these doctors would you use if you were in my position?" Without hesitation, she said, "Dr. "R". That is who you want to see." That is the doctor who got the great reviews from patients too. So it's off to Dr. R, who I hope will be gentle with this frightened patient.When I told Tim what my cardiologist had said, after getting off the phone Wed., he said,
"Just another day in paradise at our house!" Now, just like everything else, he has put it out of his mind and was just saying the other day, "we should go away for a few days on Memorial day weekend. Maybe we'll go here or there" etc. I was like "HELLOOOOOOO, remember me?, I may be having a cardiac procedure around then!!!!!! You think I want to take a trip right now, with what's going on?" I tell ya, I'm just invisible around here. Last night, I went to bed and he picked Liv up at 10 pm. The two of them were laughing and yelling downstairs and woke me up.They kept it up and I finally yelled down, "you're kidding me right?!" Tim was like, " I didn't know you were asleep." No, he just came up a half hour before and I was in bed. WHY IN THE WORLD would he think I was asleep and they should refrain from yelling? Some days, I feel like nothing but a pack mule around here.

WAIT, I hadn't even totally figured out the last configuration!

I guess my blog changed. When I sign in now, it has a whole new format that I can't even begin to figure out. It just took me a minute to even find out how to make a new post. OY! I hate the new facebook timeline too, and have not switched my own page, but understand that they will all change automatically on some such date. Terrific. Just when I start to feel somewhat adept at something, they change it all around. So, onto the news. Not too much, I guess. I started my blood pressure meds on Sunday. The doc didn't think this low dose was gonna touch my numbers but it has. So far, no troubling side effects to report, which is a miracle for me. I can't avoid these meds anymore. My pressure is way too high. My car is at the shop for the second time in a week. Something is majorly wrong with it. It's only got 57K miles on it. Boy, they don't build them like they used to. I'm hoping it doesn't cost too much. I'm only keeping it another year or so. Olivia is still kicking butt in softball. She is striking out batters like crazy, catching pop flies and throwing girls out on base. She has made most of the outs herself and even hitting really well this year. She totally rocked on Friday night and the head coach gave her the game ball. The kid is dominating the mound. We were freezing Friday night and in the first inning, she struck out the 1st, 2nd, and 4th batters, retiring the inning in 4 hitters. She got hits at all her at-bats, and parents were coming up to me in the dugout and saying, "MAN, she's on FIRE!" It was great fun! Our 2 poor catchers were catching her fastballs with cold hands and both of them said their hands were hurting, she was throwing so hard. I spoke to my mother-in-law for the first time in 6 months. I had to call her to give her field directions for that game. I kept the conversation to Olivia's games and an injury she'd suffered in the prior game(catcher ran into her as Liv was about to catch a short pop-fly and knocked her silly, hitting her in the mouth with the catcher's helmet and cutting her lips up on her braces.) She is fine, though. I don't think Tim's mom wants any part of getting into "things" with me. Neither she nor Tim's dad EVER says a word about what happened, not that there have been more than a few, short phone calls anyway. I'm sure they don't want to hear the truth. I think it's bad enough for them to know that they screwed over their son and his family so badly, he doesn't want to see or speak to them, and Tim's sure they're hoping it will just "blow over" in time. My parents are home from their cruise. Mom wound up in the ER when they got back, with what she thinks was an intestinal parasite, but overall, they enjoyed the cruise. Her memory is really slipping, and mine seems to be nearly as bad, which scares the heck out of me. I'm so hoping it's all this menopause and stress nonsense going on with me. Cancer is still such a main focus in my mind. The other night, I took Liv and her friend to a charity basketball game, played by some teachers and parents from our town's 2 elementary schools. It was to benefit a family, whose 1st grade daughter has been fighting brain cancer since she was 13 months old. We wound up sitting right behind the family. I almost cried several times. Here's this pale, little girl who is mostly bald with scars on her head and little wisps of hair poking out. Here we were, right behind them, with our own cancer battle going on, and a few rows behind us, was a girl whose dad died of colon cancer a few years ago (I knew him since I was a teen, he married a girl I was friends with.) In the space of 10 feet, you had 3 families devastated by cancer. CANCER SUCKS! I just don't know how you go on, when it's your kid though. I know people don't know how I go on, with Tim having it. I guess the answer is the same. What freekin' choice do you have? This mom in front of me, had 2 younger girls too. The youngest, under 1 and still nursing. I guess, like me, she puts the game face on and does what she has to do for her family. If the mom goes down, the whole shebang falls apart. Some days, I think I'll go get a steel magnolia tatooed on myself. I'm no southern gal, but I don't know what would substitute as a northern/jersey girl symbol. Maybe brass knuckles. Soldiering on.......

Cardio doc visit

Yesterday was my visit with my cardiologist's PA. Luckily, or unluckily, she decided my case was too sensitive not to call in the "big guns" so after consulting with him in another room for about 20 minutes, in he walked with her. I gotta tell ya, it gives a person pause when a long-time cardiologist is so nervous about putting you on blood pressure meds that he takes a half hour to go back and forth in his mind about it and shows such a lack of confidence in his decision, even though my blood pressure is way too high. Knowing how panicky I am about meds(I've had many adverse reactions in the past), he said, "are you gonna take this if I prescribe it?" I said, "I really don't have a choice, I've got a 13 year-old kid and a husband with cancer, I can't keep walking around with BP this high." I am very nervous about taking it and am trying to find a day when Tim will be around and I won't be home all day by myself to start it and those days are hard to find with his work schedule. The doc is starting me on the lowest dose. He doesn't even think it's gonna do much for my BP but he wants to build me up slowly. Oy, I just feel like nothing is easy for me. I hope I can tolerate it. I have to do something. I sure wish I'd had the will power to diet and exercise but he has told me it wouldn't matter. Not sure I totally agree with that, but the truth is, I have not done it, so I have nobody to blame for not knowing if it would help, but me. My whole family has high blood pressure and they've all been on meds since their 30's. I've put it off too long. Hopefully, all this worry will have been for nothing and I can get on it, do well, and that will be that. I don't even think I want to read the warnings. That's not my normal M.O. but why scare myself more. I have to get on something and he thinks this is my safest bet. I was a little annoyed when I found out that the hospital had not forwarded the EKG tapes from the ambulance. The EMT specifically printed and marked a bunch of them, saying that they would be very helpful for my doctor, and my doctor agreed, saying he wished he had the tapes. I have to call today and see if I can track them down and I am hoping they were not thrown away or lost. Well, off to my list of things to do. Too many chores, not enough time or energy OR desire to do them. Story of my life.

These days

I am recovering from my recent scare a lot better than I might have imagined I would've. I don't know if it was the valium and sleep deprived state I was in when it happened, making it feel like it was a bad dream, or the fact that I fear going back down the agoraphobia route much more than I fear SVT happening again. But, whatever the reason,
I have put it behind me pretty well. Oh, I'm sure my frequent palpitations will give me a bit more of
a "start" when they happen now. And, my next vacation may be a little nerve-wracking, knowing I am not so near to healthcare. But, after all the scares I have had in my life, one realizes that if something is not happening to you right now, you can't sit around waiting for it to happen, you have to get on with it. With our current life situation, going back to avoidance behaviors, with the responsibilities that I have now, and Tim's insane work schedule, is just not an option. I go to the cardiologist this Tuesday. I will be nervous, AND annoyed because it took so long to get this appt. and I'm still only seeing my doctor's assistant. I hope I can start blood pressure meds, that will also help me avoid another incident like this last one, without causing more fainting issues. A lot to consider here and I HATE not talking to my own doctor about it. I'm starting to think I should have waited for his next opening, but we'll see how it goes. On another topic, we have started our softball season. Olivia is starting pitcher this year(she was relief last year). She is doing fantastic, though it is VERY hard watching your kid pitch. SO MUCH pressure. We won all 4 games that we played. On Tuesday night, we played a game that had to end in the 4th inning due to darkness. Most fields have lights, but not all.
Liv pitched the whole game(they can only pitch 4 innings at this age). They stopped the game after the 2nd out of the 4th and out of 11 outs total in the game, Olivia made 8 of them. She struck out 4, and fielded 4 grounders, tagging one runner out, and throwing 3 more out at bases. It was AWESOME and nights like that get me so pumped up, as well as make all those expensive pitching lessons worthwhile. She has told us that this is her last year. She has gotten tired of softball, having played since 1st grade. I'm sad but it's her decision and Tim and I have coached for all those years. I like being a spectator too and it will be nice to have more time to myself in the springs. My parents are coming home from a 10-day cruise on Sunday. They called me from an island the other day. I think it was Antigua. They said it was gross. I don't know why they would stop at places like this. I guess there are nice parts of the island, but the area where they docked was complete with open sewers and rats and they were really turned off. They started to explore and just headed back to the boat instead. I've never wanted to go on a cruise. People think I'm nuts but with my vertigo, and lousy stomach(people rave about the food they serve), I find no allure. I like the ocean, from the beach perspective and not from the middle of it. Anyhoo, I have decided not to tell my folks about my episode. They are so worried for me and my family already, with Tim's MM. My mom's memory is slipping and she is possibly living her worst nightmare(alzheimers). They don't need more things to make them sad and worried. I also don't want them to think they can't go away on trips because they think we need them here for a support system, knowing we don't have Tim's family. Speaking of Tim's family, his parents came to one of Liv's games this past week. They have been leaving messages asking about the schedule and when I finally got it, I mailed it to them. Kinda nerve-wracking having them there but at least the bleachers were not close to my dugout. I sent Liv over after the game to see them, for the 1st time in 6 months. They gave her an Easter gift but spent surprisingly little time with her, and then left. Truly a sad situation. One wonders if my father-in-law has changed his attitude, after seeing how dearly it cost them, but my brother-in-law just took him to VT to have him spackle their laundry room and my father-in-law still called him a derogatory name. Honestly, I guarantee you that you have NEVER met anyone with a bigger chip on their shoulder. He thinks that tearing everyone down, brings them to his level of misery. He is going to wind up with noone in his life, except his wife, who has put up with it for 55+ years, and the kids of theirs who are waiting for an inheritance. I guess leopards really don't change their spots and some people never learn from their mistakes. So, back to moi. I started working on ME, this week. I'm doing a little meditation to calm my mind and got in for a massage. Gonna try to keep it up. I need to find a way to relax more and focus my mind on tasks at hand. Despite my life being somewhat mundane, my mind has been in a whirlwind for it seems like forever. I need to slow it down. I feel like I'm going nowhere, but at warp speed, like a gerbil on one of those exercise wheels. The days just keep spinning away and I'm accomplishing very little around here. Nothing new there, but I really do have a LOT of things that are long past due, and my life would be so much easier, and calmer, if I were organized and caught up. Why can't I get myself to DO THIS? I think that it's all gotten so far away from me, I am overwhelmed and know it can't be solved in one sitting. I need an assistant, someone I can delegate the everyday stuff to, so I can get to these necessary projects. I guess I have
to be happy taking "baby steps" and getting a little done at a time. SO not good at that patience thing.
Maybe I need to move down south, where the pace of life seems slower. It would probably drive a Jersey girl like me CRAZY, though. It's a short trip! Opening day starts in awhile. Gotta run.

A day in the life of a stressed out caregiver

Well folks, I thought I was checking out yesterday and as I lay in an ambulance, having to have my heart stopped and re-started, TWICE, to stop the arrythmia and 250 BPM heart rate I had, I thought,
"how are my blog buddies going to find out that I "popped my clogs?" Noone knows about my blog to sign on and tell them.
Anyhoo, two stellar men saved my arse and I'm here to tell you about it, myself. To start at the beginning, well, not really, but I don't want to bore you any more than necessary,  I sit at this computer too much. I sit on my legs too much. Sometimes, I cut off the blood flow too much and make myself woozy. I run to the couch, lie down and put my feet up, my heart beats hard and fast to get the blood to my brain, and after a few deep breaths, I'm fine. I have a history of irregular heart rates and fainting spells. While it's always scary,
I've had to find a way to live with it. Yesterday, I ran to the couch feeling faint and my heart went insanely fast and would not slow down. I freaked my poor kid out, and called an ambulance, while she called Tim from her cell phone. Tim knows so many cops, from doing their wood floors and becoming so well known in his business,(a fact that has gotten 2 employees and one employee's girlfriend out of a traffic ticket) that in a minute, every cop in our town had raced to our house and our favorite one was the first one here putting oxygen on my face while I lay on my porch trying to stay conscious. The ambulance came, then the mobile, intensive care unit, which thankfully, parks right up the road from my house when not on another call. They would not even drive to the ER. They hooked up leads, said, "she's in SVT", and I thought, "OH SHIT." There were plenty of times in the next few hours that I wished I did NOT know about medical stuff. I knew this was something "ventricular tachycardia" and that I was in an arrythmia. NOT good. They gave me a medication that stopped my heart and restarted it. They told me to cough if they told me to. I also knew that that is something they tell people to do when they are having a heart attack. Just freekin' great. Not a pleasant experience having your heart stopped and kick started again and if you have the choice between that and a colonoscopy, choose the latter. It feels like you're having a heart attack, and you kinda are having an induced cardiac arrest. They had to do it again with 2x the dose to stop my heart longer, it hurt even worse, and it finally snapped my heart back into the correct pattern. Then they drove to the hospital. I had to keep myself from "back gurney" driving because I drive to this hospital all the time and don't know why they took the route through my town that they did. I guess it would not be a great idea to complain about the person driving you to the hospital. I sat for hours in an overcrowded ER. They would not let Tim in for a few hours. My blood pressure was way too high but my heart was stable and they gave me some meds for the BP(a beta blocker and a valium, after I refused 1mg of IV ativan because I wanted to be awake by the weekend) and sent my traumatized ass on home telling me to go to my cardiologist. I thought for sure I was going to die. I told the medics in the ambulance, "ya see that guy looking in the back window?, he has cancer and we have a 13 year old kid, please get me through this." And they did a bang up job of doing just that. The one guy had lost his wife to pancreatic cancer and when he left me at the ER, he said, "I'm gonna stop by your house and check up on you when you get home." How freekin' sweet is that? It was a scary event, to be sure. He asked if I was nervous because my BP which was low with the arrythmia, then went high, which is more my norm, especially when anxious. I said, "Am I nervous?!!! Does a bear shit in the woods." They laughed and said, "I guess you're fine now, you got your sense of humor back." Meanwhile I'm thinking, I'm just trying not to cry here 'cause I am REALLY PISSED that this has happened to me and my family. And, here is a brief description of our support system. My parents just left on a 12 day cruise. My older sister, who lives close by to me, is in Baltimore on a business trip.
My younger sister, who is an ER nurse, estranged herself from our family after her divorce. My youngest sister, lives an hour away and has 2 small kids. Tim's parents, live just a few minutes away, in the next town, and we are not on speaking terms and Tim said, "NO" when I suggested we may have to have them watch Olivia. Luckily, we made it work with friends and terrific neighbors and as much as I bitch about living in NJ, where people can be cold and selfish, I must admit, there are so many people who were willing to jump into action for us, including my Pastor and church lady friends, and the medical help was at my front door in minutes. The first cop on the scene knows us personally,(Tim did his floors) and he knows Tim's medical situation and was so sweet to me when he got here. I was laying on the porch with an oxygen mask on and closing my eyes to relax and block the sun and the poor guy thought he was losing me. He said, "Open your eyes and talk to me Denise, don't go to sleep." I guess we are pretty blessed to be living in our little town. AND I guess I have to get more serious about taking care of me and getting stress out of my life. Stress and lack of sleep are major causes of this and I've had both of them, in spades, lately. I have to make an appt. with my cardiologist and go on blood pressure meds and see if there is anything else I have to do to avoid another "cardioversion" procedure. I also have to try to make sure this does not snap me back into the avoidance behaviors that caused my agoraphobia when I had all those blackouts and fainting spells.
It's a real shock to my psyche, because the way I have always coped with the irregular heart rates and
pre-faints, is to say, "OK just take a few breaths, this will pass in seconds." Well, this one did not and put me into a pretty hairy situation that is gonna cause some significant fear in the future. Heck, I was just in the boonies in VT a week ago. If this had happened up there, so far from medical care, could I have "bought the farm?" I dunno. And I don't want to find out. It's a new day and I HAVE to get serious about self help. I AM NOT doing enough to control my stress. So all of you out there who are living under stress, get help, take care of yourself, make yourself a priority. You may get away with not taking care of yourself for awhile, but it will catch up with you eventually. I wish I had been spared this very scary situation and what it did to my kid. Peace of mind is worth more than anything in the world. Without it, it doesn't matter what else you've got, it won't make you happy.

Marriage and cancer

I don't want to make this a long post. Quite frankly, I have paperwork to do that I have to STOP avoiding. But, I am very sad today. Having your mate blow off steam on you when they're stressed, is part of being in a relationship. I get it. I've been in a long term relationship since 3 months after I turned 16, and that was a LONG time ago. The difficult part is when there is not nearly enough of the other side of that spectrum and you start to feel like nothing but a whipping post. It gets old when you hear nothing but a raised voice, slamming your words back down your throat, when you've said nothing wrong, OR been misheard by someone with hearing loss. I feel like I'm living with Tim's father, some days, as this is the exact garbage I got from him. I suppose I should not be surprised. People learn what they lived and then go on to live what they learned. That doesn't make it any easier to cope with though. I blasted my husband last night, ending with saying, "don't bother talking to me at all, if this is the only way you know how to speak." The real irritating part is that he was handling the stress of being so incredibly busy at work just fine. Add these phone calls from his mother, going to and leaving VT, and him struggling with what he plans to do about it all, and, voila, you have a pressure cooker and "yours truly" is still suffering the consequences of this whole family disaster. We just can't seem to get far enough away from this mess, to have it stop affecting us in a very negative way. And my husband just can't seem to understand that I will NEVER be OK with someone treating me like that. Period. I made the mistake of doing a google search about marriage and cancer. First, I found an article that said there are statistics that show 3 out of 4 men leave a wife who has been diagnosed with cancer. The same study showed that 3 out of 4 women STAY when their husband is dx'ed with cancer. Then, I found a blog. Of course, this couple is madly in love, supporting each other through thick and thin, and just the picture of marital bliss despite weathering cancer. I think we need a more realistic blog, with helpful tips on how to weather cancer, and marriage, and raising kids, and running a business, and trying to stay afloat financially, without winding up in a straightjacket, to keep you from harming yourself or others.

Spring break

We just got home from Vermont last night. It was cold and we did get flurries a lot but my sister has a gorgeous spot there and it's so peaceful. Tim worked hard doing the wood floors but then we got some free time and sight-seeing in. We hit Ben & Jerry's on "free ice cream" day. Woohoo! It was a bit difficult, out-law wise, as we stopped by their VT house and retrieved some of
our belongings that were there. Don't know how we're gonna get his 2 snowmobiles out of there and home here. His parents were not there, obviously, and our daughter cried when we drove away.
We don't know how much we'll be going to VT now and it's been such a big part of her life. Sad. Tim's folks found out that we were going and called Tim's cell and Olivia's too to wish THEM a safe trip. Olivia spoke to his mom, Tim did not pick up the phone. His mother left another message for Tim today about seeing Olivia for Easter and giving her a gift. This sparked a lot of stress as my husband considered dropping her off for an hour but he does NOT want to see them and he blew his stack on ME before. I was upstairs, resting, minding my own business. I just love that his family causes such strain on our marriage. SO not cool. I told Tim that this was his family and his decision and he would have to learn to deal with them without blasting me, in front of Olivia, and causing the exact problems that they were causing us, in our home now. I mean,  just how many people in that family are gonna blast me every time they're in a bad mood. It's an epidemic, I tell ya.
Well, let's get back to Easter and talk about something more important and relevant. Here's something spiritual. My brother-in-law is not religeous at all. He's been having some real trouble at his business and is considering retiring from it and moving to their Vermont house. Just a few days before we left for VT, he was in the shower and was so disheartened, he decided to ask God for a favor. He said, "God, just give me ONE good day. That's all I'm asking." The very next day, he got a call from his bank. He's thinking, "oh boy, what now?" The guy tells him that they made a mistake with his principle and interest on his loan for the commercial building and they owe him 90 thousand dollars. Taken off his remaining loan, basically he has a few more payments and the loan is paid. He was stunned. I told him, "that was a sign for you, directly from the BIG MAN"(and I'm not talking Clarence Clemons). I said, "listen, I'd like to hit the lottery, how about you get nekkid in the shower and ask for me!" We had some laughs about it all but I was a little surprised to hear him say in VT that

he is still not a believer. I said, "He showed you He is listening."  I guess it didn't help that he came home from VT and his secretary quit and he had to fire another guy. But, I think I'm gonna say my prayers in the shower for now on. They still might not be answered, but God may get a laugh out of it anyhow. The pics are of my sis and b-i-l's house and the view. Our first day there, this old man neighbor comes driving his truck across their land and shooting at animals out of the window. SO illegal and pretty scary when my kid and dog were just out there before this.
My brother-in-law walked out there and had a little talk with him and he won't be doing that again. This place is in the real country. You know that when you can buy baby food, beer, and bullets, all in the same store. Cue the banjos.

The Easter bunny needs snowshoes

Well, my idea for this spring break was Washington DC. Unfortunately, my husband decided we
are going to my sister's VT house so he can sand and re-finish her wood floors. RATS. Weather forecast in DC, 60's and 70's, possibly near 80 for a day or two. Craftsbury, Vermont forecast, 40's all week,
dropping down to below freezing at night. We may hit snow driving up tomorrow and there is talk of
snow showers while we're up there too. OY!!!!!!! Well, we just have to make the best of it. Liv isn't
going to get much softball pitching practice in, that's for sure. Too cold and you can't pitch in a winter
jacket. She just got her braces on yesterday. She is going to milk this eating ice cream to sooth her
sore mouth for 2 years, I'm sure. We come home Good Friday and then I have a house full of people coming for Easter dinner. Hopefully, it's not all work and no play this week. Tim is exhausted from
working so hard and really needs some decompressing. Sure wish we could hit this 600+ million bucks tonight. Would be so nice to drop out of the rat race and live our life to the fullest everyday. There are so many people I would like to help out. It stinks when you spend so much of your life making a living and your free time is so rare. There's got to be a better way.

Hottest dentist award

Yesterday, Olivia had her first appointment with a new dentist. Our old dentist is retiring and sold his business to someone that is a bit of a ride from here. Olivia's orthodontist recommended 2 guys just a mile or so away. Turns out my neighbors use them and like them. So, off we go. Olivia gets her braces next week and I wanted her to have a cleaning before they were put on. So, a real nice woman cleans her teeth and asks if I have a preference of dentist to see. I told her that I didn't know either of them so  whomever she thought was best with kids would be great. She said, "they're both great with kids" and went out to grab one. Apparently, she chose the one that is favorite among MOMS, 'cause a few minutes later, in walks this little slice of heaven. I'm pretty sure my mouth dropped open as he walked up to me with a megawatt smile, dimples, and moon eyes to say hello and shake my hand. Maybe I should take this time to tell y'all that Tim does not read my blog and doesn't even know how to find it. He is not a computer guy. Hates them really, so when I say things about MM, my struggles as a caregiver, his family, or in this case, smokin' hot doctors, he is not seeing any of this. OK where was I, (SWOON) oh yes, the GQ dentist. So he checks her teeth as I'm watching and thinking that we have DEFINITELY found our new dentist here. He says, "everything looks great" and walks us out to the desk to pay, shaking both our hands again and saying, "it was nice to meet you." Um................YEAH SAME HERE!!!  I grab a business card and circle his name so I do NOT forget which one we saw and pay my bill wondering if they have a different pay scale for dental work done by a shirtless dentist. A girl can dream. Wow, I have NEVER met a dentist like that. Just criminal what that man does for a pair of scrubs. I would have kicked old Dr. Johnson to the curb YEARS ago if I'd known about this guy! I think it's high time for a checkup and cleaning for myself. My dental health just got a WHOLE lot more important to me!  ;o)

New friends, old friends

So, after "housecleaning" these last few years, and by that I mean, letting go of people who are toxic, I have begun making new friends. It's not easy. I have never been much of an entertainer. I guess I always feel like people have such busy, exciting lives, while we stay home a lot and just relax, watch TV, spend time with just the 3 of us(though Liv goes out much more now, and it's just Tim and me hanging out sometimes). I always had an uncanny habit of planning things outside and then rain comes or things fall apart somehow or other. With Tim being so busy, and then so tired when he isn't working, it's not easy to plan things. Going out to eat, with my horrendous stomach issues, is not fun for me. There are several "myeloma couples" we are WAY past due to get together with but, what do I do with my kid? I don't like her to be around when we discuss cancer stuff and that always comes up. I really just have to make the calls and set a date and get together with these folks. I hate that we spend SO DARN MUCH time doing what we HAVE to do and not what we really WANT to do; another common theme in my blog posts. I guess too many of us spend what should be the best years of our lives making a living and keeping afloat financially and when that's over, you have more time but nothing to do, or health problems have set in already. I have made a lot of friends at church, most older than myself, and this is the first time I have ever really felt a part of a church. It's nice. It isn't that I socialize with these people outside of church functions though and that is what is missing in our lives. I have always gotten along great with older people and find them so interesting. Yesterday, I helped out at a funeral for a church member.  I know these people and the husband died after years of fighting Parkinsons. A bunch of us helped with the luncheon and then, after everyone else ate, we grabbed something and sat down to a bite. I sat with this couple, who are in their 60's. I cannot believe how interesting it is talking to people of older generations. This guy, Dave, was in Germany when he was discharged from the army. He backpacked all over Euprope and Asia for 10 months before he headed back home. He just wanted to see the world and knew he probably would not get another opportunity to do so. He told us all sorts of stories about what he saw. I was amazed. Then, when talking about Europe, one man said something about nude beaches. I mentioned the one not far from here at the Jersey shore and Dave's wife says, "Oh I used to go there all the time." HOLY TOLEDO. I've always wondered if I had the guts to do that and was tempted to try, years back,  but here's this woman almost my mom's age and she used to do it all the time. I said, "man, you folks are renegades!" I feel like I haven't lived at all compared to these people. The hard part about getting to know all these older people, is losing them. We had 2 church members die in 2 days this week so I will be going to another wake this weekend. But man, did these people LIVE! They make me see that I need some excitement in my life!!! The GOOD kind. And I have to get a whole lot better at planning to get together with people. Just do it!  A good slogan to have.

5 years

Our family(a motley crew) on the1st Christmas Eve at our house. Obviously, my Dad was the one setting up the camera and diving into the shot.

It's been 5 years since we were told Tim has MM. On one hand, the time has flown by so fast. On the other, as many of you will probably agree, it's hard to remember our lives before MM barged in uninvited. I probably start every yearly post the same way. It's so true.

Well, Tim's cold got really bad. It worsened and he came down with a fever even with the Z-pack. I had to run him to the doctor on Sat. and we, of course, had to scoot off to get a chest x-ray to make sure he did not have pneumonia. Then, on Sunday, Olivia and I started feeling wonky and now we both have it too. It's a nasty one, not the mild-ish version that Tim and I had in Florida. I'm sure mine has turned into bronchitis. What was freekin' me out a bit though was that the dates are all falling on the same weekdays as when Tim was diagnosed 5 yrs. ago, and the circumstances were repeating themselves. He was sick with a fever that weekend 5 years ago. Ditto for this past weekend. I was sleeping on a cot in Liv's room to give him the bed to himself. I did the same now. But, 5 years ago, I woke up to hearing him choking at 2 o'clock Monday morning and took him to the E.R. This time, I did not. He had his 1st bone marrow biopsy on Tues. and we got the bad news on Thursday, the 8th.

So, this past year.............well, it was mostly good. MM-wise, Tim started showing a slight band on his SPEP and immunofixation tests in Jan. so I thought 2011 was going to be the year he relapsed and had to start treatment again but, it wasn't. His tests still show the same thing and his doc said the MM is still inactive. A blessing.........a miracle really, and we don't take that for granted. We had some really nice vacations which is always the best parts for me. Business has been very busy and continues to be for Tim. Olivia's social life gets busier each year and I feel like I'm a taxi driver. The biggest negative this year, of course, has been the split from his family. It's been 4 1/2 months and none of them has even bothered apologizing for anything they said/did to us. I'm shocked by this but Tim said, "Denise, they're NOT sorry, they can never admit they're wrong and they are blaming us(probably me) for everything that's happened. We stood up for ourselves, now WE are the outcasts." Mind-boggling sometimes, the lengths people will go to blame others for their own blunders. Apparently, I'm an excellent ventriloquist! Who knew?! Oh well, what can ya do? Life goes on.

Tim feels really well these days. He's tired, but 48 year old men who beat the heck out of their bodies everyday at work will be tired, though still look smokin' hot! ;o)  Most customers can't even believe he's 48. They think he's 10 years younger. Most don't know he has cancer but the ones that do REALLY can't believe it by the looks of him.. Aside from a few tiny scars from his hickamn catheter and his hair being a little thinner and MUCH straighter, he appears to be unscathed by all that he went through, on the outside. So, how am I doing, 5 years later? Well, I guess about the same. Still not taking time to do for myself. I cry much less these days, though all it takes is one line from a sappy song or a certain memory coming to mind and the tears are still right there. I worry, daily, about the future; finances, Tim's health, my own health. How will I find a job when/if Tim can't work anymore after so many years out of the work force? How can I work a job just when he will need me around so much more? It's an endless loop of concerns running through my brain. On Liv's birthday, May 9th, it will be 4 years since Tim's last chemo treatment. This is why I don't cry whenever I am alone, like I used to. We have not lived in that scary, frantic place for a long time now. I do not watch my husband swallow or get IV's of toxic substances and suffer the side effects. We are not back and forth to a cancer center so many times, it feels like we never left. We are not sweating out lab results every few weeks. BUT, MM, and thoughts of what the future holds, still haunt us everyday and we know we can be right back to those things at any time. We know, we're not outta this. We are a family dealing with cancer. It affects all our decisions and attitudes. I check off a bucket list of places I want us to go before we can't anymore. I exhale with every birthday and Christmas our kid celebrates with her family intact. A lot of people think Tim is cured. Sometimes, people say things to me about that and I have to tell them that he is not. Depressing. He's been doing so well, looks so darn good, and been off treatment for so long that they all think this is a done deal and he beat it. I wish. You can see their faces drop when I tell them that isn't the case.  I just can't avoid the reality of it all, especially after losing so many wonderful people I have met or come to know, either personally, or via the internet, these last 5 years. MM has brought some really wonderful people into my world, but my heart breaks, even more than it already is, everytime one of these people is lost to us.

I think that learning to live in the moment is the only way to live with this damn cancer hanging over our heads but it is so hard. So many unknowns and worries swirling around your head. So, I've said it before, I have learned a lot these last years. About myself, Tim and others. Not all of it good. Some of it pretty impressive though. I feel like Tim, Olivia, and I have been tested by fire. We're still getting through it, together, all 3 of us being stronger than I ever could have imagined we could be. I think that after going through so much in my life; my own life-changing health issue, being let down by so many people, Tim's MM; that I should be the most jaded, depressed person. Well, I am a bit jaded. I do not trust people easily anymore. I've learned to expect very little from people. If something good pops up from someone, I am pleasantly surprised and appreciative. But, I will be a lot more careful about who I let into my life from here on out. I probably am a bit depressed too. Who wouldn't be? But somehow I manage to be hopeful too, and grateful, and crack a joke now and then. I've learned that reaching out to others, and helping any way you can, heals your heart. And I have found NOTHING that helps you cope and feel better than that. It's true, you get so much more when you give. It makes you feel worthwhile and useful and I think that goes a long way to stave off depression. I suppose I could retreat and worry about just our own situation. Heaven knows, I have a lot on my plate just taking care of all my responsibilities. But, this is also alienating, and I need to be around people. Everytime I get back from my MM support group, I feel as if a little weight has been lifted off my shoulders.My little family may not have some of the people supporting us that we thought we would have, but we do have a lot of people who really care about what happens to Tim and our family. I may be jaded but I have not lost hope in people as a whole. I'm just a lot more picky about who I hang with these days.


Quote of the day: Associate with men of good quality if you esteem your own reputation; for it is better to be alone than in bad company.       George Washington

Happy spring y'all. Gonna hit near 70 today in Jersey and we are LOVIN' it.