How ya feelin? You look great!

There's a discussion going on the myeloma listserv right now about people's reactions to you
when you have cancer. Some people are so sick of hearing these cliche statements. The "you
look great" one can seem a little patronizing when you know you look not so hot. Tim and I spoke
about this awhile ago. Tim is such a laid back guy and it would take something pretty over the top to find his cranky side. He knows that people don't know what else to say. He never gets bothered by it. I really don't either. I do sometimes wish we had the chance to forget about it a bit when we're out though and I get concerned for Olivia when so many people come
up to us and ask how Tim's feeling but as Tim said once, these same people may think we'd
be bothered if they didn't ask. (we wouldn't) The one thing I found interesting though after his diagnosis is how many men are afraid for their own health and started quizzing Tim about what
symptoms he had and how they found out he had this. You can tell by the look on their face and the questions they ask that they are concerned for themselves and not Tim. One of Tim's old high school chums totally cornered him during a party we were having with a slew of questions
and that got me a little annoyed. He would not let him go till he got the answers he
wanted and this was at our annual Christmas open house and I know Tim would have liked to
have a little normalcy that night. Then there was the time a guy really stuck his foot in his mouth and said something about dying and headstones and it came out like he was saying Tim
was headed for that and I just winced. There've been plenty of times I've wanted to draw
something I've said back in but this was a time I wished I could've taken someone else's words back. In the very beginning, some people were so uncomfortable that they avoided making eye contact with us. This is pretty painful, I must admit. It's like you've just been totally booted out
of the "normal club." When Tim lost his hair, he would walk down with me to pick Olivia up from
school and I thought this was so great. Chemo baldness is like wearing that scarlet letter "C" on your chest especially when everyone knows you with a gorgeous head of hair. Sure it bothered him but his little girl was more important. There have been so many times when women have spoken to me or asked me something and I just know that the
wheels are turning and they're thinking this could just as easily be them. Many times, as I have said, they say "I can't even imagine" and leave that sentence hanging and I say in my mind, NOPE you sure can't. Unless you are going through this, you cannot know the pain, fear, anger,
sorrow, fatigue, overwhelming responsibilities. You also cannot know what it is to actually hope your husband lives long enough to see our child grow up when you signed on for the long haul. Gray hair, social security, saggy body parts. I want all that with him. Hell I'll even take erectile disfunction. Bring it. I've got the rocking chairs on the porch already and I want to be there with my "old man."
I sit in the waiting room of the oncology room with a bunch of 70 and 80 year olds and wish we
were old. I don't want my husband to have cancer in the prime of his life. Our 10 year old should
not be dealing with this DAMN-IT!!! But people also don't know the love, support and
caring we have found. We have made friends with some lovely people. I have met people on websites and blogs that I would love to meet in person and have such respect for even though I've never met them. I have felt stronger mentally than I have felt in years. Even after 20+ years, I can
honestly say I did not know the extent of how brave and courageous my husband is. He amazes me every minute of everyday. My daughter is an incredibly strong and warm little person and I know that
despite this awful thing that is happening to us, God's love is shining through us as well as people around us. I have had complete strangers want to do something, ANYTHING to help.
Everytime I find myself getting disgusted with people or life, some miraculous thing comes along
and restores my faith. I watched Michael J. Fox on Oprah today and his attitude is really something. He said that with every loss, there is also a gain. Ain't it the truth. We have learned so much, been moved so much emotionally. Our whole perspective of life has changed. We appreciate things others don't even take the time to notice. As a person who was always planning
for that someday, when the house is done, when Tim retires, etc. I have been forced to live for today. I am taking cues from our 10 year old daughter and realize she has as much to teach me
as I have to teach her. If not more. So my new motto is going to be to live like a child(as much as
possible anyway.) I think they can truly live in the moment as few adults can.

The hard questions

Ever since Tim's diagnosis 2 years ago, I have dreaded the day our daughter asks me if he is going to die. 4 nights ago, it happened in a roundabout way. I have noticed in the last few weeks
that she has been a little clingy with me. It is not that noticable because we are a very close and
demonstrative family and she and I have always been practically "joined at the hip." She had asked me several times though if she could sleep with me or if I can lay down with her at bedtime. Then, Wednesday night, it happened. She came into my room just a few minutes after
I tucked her in and said she was upset because she had bad thoughts in her head that wouldn't
stop. I asked if she wanted to tell me the bad thoughts and she said that she was thinking about
me and daddy dying. My first lightning thought was "CHOOSE YOUR WORDS CAREFULLY
DENISE!" So she came over and lay down on my bed with me and I said, "Liv, noone knows when they are going to go to heaven. It's out of our control. Since there is nothing we can
do about it, you have to try not to think of things like dying. It just makes ya feel sad and ruins
today. Nana used to always tell me, 'Let go and let God.' That means when there is something bothering you that is too big to handle or out of your control, you have to turn it over to God and
let him worry about it." I told her that "daddy is doing really well now. He is in remission and things are going great. Try not to think of these things and replace them with happy thoughts."
I ended by telling her, as I always do, that she can talk to me about ANYTHING and when something is bothering her to let me know instead of letting it go on and on. I validated her feelings by telling her that her life is a bit harder than a lot of kids because of this situation but that there are a lot of kids that are in the same exact situation and she is not the only one. The next day I went to a support group meeting and met Robin Tuohy(from the IMF), whose husband was 36 when dx'ed 9 years ago and they have 2 young kids too. I told Olivia of them when I picked her up from school as well as the dad that I met there who also has a 10 year old girl. I just want her to
know she is not alone. She has done an unbelievable job of handling this and I told her that but
I thought to myself, every kid has those fears and nightmares as a child. I know I did. It must be
so hard when you have a real reason to have that fear as Olivia does. NOT fair. I know that if the day hasn't already come that she thinks to type in myeloma on google, that it will
happen some day. I don't bring it up because I don't want to put the idea in her head. I know the first time I did it and read things like a 2 year life expectancy when diagnosed in stage 3, I lost my mind. As I said in my last post, there is no getting away from the "C" word. In Olivia's case,
there are 2 girls being treated for cancer in her grade(5th). A guy I knew many years ago, died
of colon cancer last year and his daughter is in Olivia's class and the 2 of them have been working
on a project together in school. I have to wonder if this is what caused this to happen now. How could Olivia not look at this girl and wonder if this is going to happen to her too. I had several people tell me I should lie to her if she ever asked if he could die. I don't agree with that. I am always honest with her. She knows she can trust me. When we go to the doctor and she asks me
is something will hurt, I will tell her that it will for a quick second but not as much as getting her
ears pierced and she can remain calm knowing that I would never lie to her. I do know however
that Tim can be here with us a long time and to tell Olivia that he could die any day would ruin years of her life that don't have to be ruined. We are trying to salvage her childhood and we can't
let her live with constant fear either. So I decided the best way was to be honest without telling her something that would end her happiness forever. The truth is, I don't know when any of us
are passing on. If this horrible event that happened to Natasha Richardson and her family does not drive that point home, I don't know what does. Life and health are fragile. She starred in a movie called "Parent Trap" that we have on DVD and have watched many times. Olivia heard about it and said she never wants to try skying now. I said to her, "Liv, that was a freak accident. If we take you skying, you will wear a helmet. It's not that certain sports don't have
some danger involved but you have to weigh being cautious with allowing yourself to have a
life. You can't let fear keep you from living." This is a lesson I'm still learning. Fear has been the
true "F" word in my life. I've always said, having kids is all at once the greatest and the hardest
thing. They bring you so much joy but boatloads of worry and sometimes heartbreak and pain too. You just cannot protect them from everything bad in this crazy world no matter how
hard you try. I'm just trying to give her the "tools" to cope. I reminded her that we are not as
devastated over Sophie(our dog) now as we were when she first died. Not that you can compare
a human loss though she was such a part of our family. But I wanted her to know that you can heal from heartache. I promised her last July when we lost her that "it won't always hurt this bad." She needs to know she can trust what I say and unfortunately, life is all about picking yourself up, dusting yourself off and forging on.

Where's the justice?

When your life in touched by cancer, that word seems to pop up constantly. Maybe I'm just
"tuned in" but it's everywhere. The TV, conversations you hear. Everyone either has it,
is being checked for it, is taking care of someone with it. It never ends. So today I got an
e-mail from a woman Tim did his transplant with. She and her husband started just one day ahead of Tim and we became friendly quickly. She has come out of remission, reacted to
Revlimid by becoming very anemic and now was just dx'ed with breast cancer. I mean
WTF?!!!!!! You would think having cancer would give ya a free pass from being diagnosed
with cancer again but it doesn't. I think she is gonna be just fine. It appears to have been
caught early and looks contained but I just can't help but ask the universe where the heck the justice is in that. When I had my breast cancer scare, I turned to the myeloma listserv for
support and heard from several women who have breast cancer while their hubby's have MM,
some with young kids. I just don't get it. I have had nightmares about deing diagnosed with cancer ever since Tim was dx'ed. It makes ya feel very vulnerable when you get that shocking
wake-up call that says, "yup, this didn't happen to 'other people' it happened to us." Every so
often, we read a heart-wrenching story in our community paper that tells of a local family that
maybe needs help or whatever because of a tragedy. The first one we saw after Tim's dx was
a woman whose husband got leukemia, had an awful reaction to chemo, and she went into NYC
to give birth to their daughter next to his hospital bed. When I read that story, I cried. For them
and for our family because now WE were one of those tragic stories. I try to put things in perspective whenever I get too down. It's all relative. Our friend's cousin was a 40-ish woman
with 4 kids under 9. She got pancreatic cancer and died just recently. It always makes me think
"things could be worse" when I hear stories like that. There's just too darn much bad news around lately. Man, I just want to run away sometimes. This friend of ours snowbirds down
in Florida and lives about 90 minutes away from us when they summer up here. I wish I could
do something more than just be here. Her hubby needs knee replacements and the two of them
are just taking care of each other and schlepping from doctor to doctor. Well I don't have any
witty way to wrap up this post. We need some good news!!!

Going to camp

Well I did something last weekend that I have not done in over 30 years. I went to girl scout
camp. I kinda dreaded this. Tim is still not 100% after getting over the flu and cold that followed
and my mom also got sick and wound up in the hospital with a severe asthmatic reaction to the
bronchitis she had. Plus it was a lot of work and I was beat from just getting over the same illnesses myself. I was up in the air about going but decided to do it for Olivia. Turns out
I probably got as much out of it as her. I went up with my best buddy of 30 some odd years and
her daughter as well as 2 other GS moms I like a lot. We had a lot of laughs, a couple
of rough patches, but a successful trip overall. It was a spa weekend where we did Yoga, Reiki
and all sorts of self-help/exploration stuff and it was fun. Sunday was the 2 year anniversary of
the day I had to tell Tim that he had cancer so it was a good weekend to get away and try not to
dwell on that. On Friday night though, I ate my dinner outside while sitting on my cell phone
having a teleconference with Brian Durie M.D. put on by the IMF and Celgene. I actually got through during the Q & A part and got to ask my question. MM is never far from my
mind unfortunately but it was a "not to be missed" opportunity. Back to the
trip, I realized what great memories my daughter will have of it. I still recall stuff from my girl
scout trips. Things like floods that made us have to go home, latrines that were unbearable.
Good times! We stayed in slightly better accomodations this time though. I realized that if I
ever had to be camping with a female though, I would pick me! I am a handy girl to have around. This time it was stopped up toilets. I'm not fond of bending down by public toilets and turning off valves, plunging, and clearing blocked crappers but I am a "do what ya gotta do" kinda girl and most women know nothing about this stuff. I was chief navigator, spider slayer, plumber and assistant enforcer
of discipline with the girls on this trip and got several e-mails from the other moms yesterday thanking me for this.
I'm not sure this won't be one of those "no good deed goes unpunished" type deals cause I may
be conned into going on all the trips now, OY! but there's just nothing like making memories.
I think the greatest thing my parents ever did was buy a trailer and haul us all over the place
including a 2 month stint in the summer of '77 all the way across country and back. That trip
made for many priceless memories. I will never forget a science teacher that fall teaching my
class about some of the natural phenomena in the west like the hot springs, mud pots, geysers
and such. I kept raising my hand to add to the information he was reading out of the book.
He finally asked me how I knew all this stuff and I told him I had just returned from going
across country with my family and saw all of it. I will never forget that teacher going speechless and standing with his mouth open. I realized then how very lucky I was to have
seen all this at 12 years old. Many people never see it at all. One dream I have is to
do it again with Tim and Olivia. I'd love my parents to come too. I sure hope we can.

Don't take boring for granted

It was not too long ago that my life was so boring I thought my mind was turning to jelly.
I was a stay-at-home mom with a kid that was now in full time school. It's hard to turn
housework and paperwork and just the typical someone's mom and someone's wife into
a "raison d'etre." ?spelling? So I decided to get back into the landlord business. We sold
a rental we owned in 2003 and I figured I needed a new project. Unfortunately 10 days
after closing on that new project, Tim was hospitalized and diagnosed with cancer. Uh-oh!!!
Now I had 2 projects and the one of caregiver is a 24/7 job. Now I find myself overwhelmed
with responsibility. The rental has been a ton of work and aggravation. Things are going smoothly now but I'm afraid to even say that out loud. I do all the paperwork and accounting
for Tim's business and of course take care of our daughter which is mostly taxi service. Tim's transplant in 9/07 was really a ton of work between all the doctor and hosp. visits and the
fact that I went with him and took care of him 1/2 the time at a condo. We are very grateful
for the CR he is in now and it is a big help not to be doing doc visits every month anymore
but I still have WAY too many balls in the air. I really did not know how good I had it when my
life was boring. There are so many ways to fix boring. I feel like there is not too much I can do
to fix the amount of responsibility I have. Tim and I are both givers by nature and even though
we have a decent support system and a lot of offers of help, it's hard to be on the other side of
that equation now. We turn down a lot more than we accept. It's hard to change that and there's a lot that I must do that no one else can do for me anyway. Last year, I got so behind in paperwork and then I get depressed and can't catch up. I paid a price for that so this year I
am trying to keep up and not get behind. Tim has gotten to the point where he is tired of working. It takes a lot out of him and since we had to take on employees when he got sick, there's the aggravation of dealing with that too. We did not hit the big lottery again so there's no
retiring now. I'm wracking my brain with what kind of work I could go into that would give us
medical benefits so he could stop working but having been out of the workforce for as long as
I have is poison on a resume and many have lost jobs and are looking who have current experience. I don't know what the answer is. I've been running like a nut all week, I'm leaving on a Girl Scout trip with Olivia tomorrow. My mom is in the hospital having a really bad asthma reaction to a cold. I'm taking Tim to the doctor tomorrow before we leave for bloodwork cause
his white cells are too low(hopefully just a reaction from the flu and the cold he caught right after that). I'm just getting over the flu and cold too and while Tim laid on the couch for 3 weeks,
I still had to cook, clean, do laundry and all the other jobs I do while taking care of him and Olivia. OY!!!! I'm exhausting myself just typing this darn post. Well the moral is, as I said, don't take boring for granted. If your life is boring, my goodness, CELEBRATE. I can't even begin to
tell you how badly I want that back.

On-line support

When Tim was first diagnosed with MM, a woman I know, whose best friend also has it,
gave me a few websites to check out. One of them was a listserv and being somewhat
technology challenged, I started to check it out and then put it off when I saw that I had
to create an account and all that. I have no patience or I have ADD, not sure which at this
point. :o) Some months later, I finally signed onto it and wished I had not put it off. The information and more importantly, the support I have found on this site have been so vital to me ever
since. I have spoken to MM patients from all over the world, some of which are doctors themselves or just plain geniuses. I have learned more from these people than anywhere
else in our MM journey and when I recently had a breast cancer scare myself, I turned to
them at 5 AM on a desperate morning and got scads of e-mails offering support, prayers,
and well-wishes. I have received so much emotional support that it is the first thing I recommend to anyone I run into now who is newly diagnosed. I think it is a must for patients
and caregivers. There are many days I am laughing out loud at the posts there as so many of us use humor as a coping mechanism. This ACOR listserv, in addition to some blogs that I follow, have been a lifeline of sorts for me. It
is amazing how bonded you become to people who are dealing with the same things you are even
if you have never met them in person. There has been more than one time that I have been brought to happy tears while reading great news on someone's blog or the listserv. When someone is struggling, we all worry and when they are doing great, we all celebrate. It is powerful stuff, I tell ya. For anyone dealing with illness or MM, I highly recommend finding
the applicable listserv at the ACOR site. Before this, I never would have believed you could
feel such support and learn so much from strangers via the web. I know better now. Every little bit helps.