730
We heard the news today that we didn't want to hear (oh boy)
Although Dr. Costas at Mayo did say that sometimes folks with Multiple Myeloma go on for long periods of time, it's not common. He wasn't hopeless or pessimistic, but realistic. We appreciate this - we've not based our marriage on false hopes, we're pretty honest with each other. It seems this is the best way to continue - hopeful but realistic.
We were told what the doctor at U of M told us - but the blow seemed softer somehow. Probably because we had heard it before and we were waiting for it. I recorded it on my iPod, but I think I screwed it up. Damn.
Dr. Costas was frank. He said the time frame we're looking at is a couple of years.
I'm clinging to numbers, math, things that can be quantified. It was stressed to us that everyone is different, every scenario unique. All they can tell us are the averages.
My mind is filled with numbers and math;
Max is 9 and Hannah is 10.
730 days.
17,520 hours.
24 months.
We've had 15 years together
Married August 21.
Gerry was born 54 days before my brother, Jim.
Mom's birthday was May 24.
Useless numbers.
Since our appointment with the social worker is tomorrow morning, we decided to drive home and save the $$ on the hotel. More numbers. We leave at 7:30. Home, if lucky, by 1:00 ish.
We did stop on the way and had a very good dinner - 1 down, 729 to go? Don't you DARE tell me not to go there - How can my mind NOT go there. I won't dwell there, but I can't help but peek inside, and don't try to stop me. You're not the boss of me. So there.
It was a long and quiet ride home to get the kids, and thank our friend who'd watched them for us. Thank you Jane, thank you Cora - thank you so much!
This has come on very quickly - as you know - and Gerry's in stage 3. That was news to me, but Gerry seemed aware of it. He's better read on this than I am. 3 is worse than 1.
Mayo wants to do the stem cell transplant sooner rather than later (he's responding very well to his medication - yay - and they said there's nothing really to be gained by waiting 3 months) so it may begin to happen as soon as end of July / beg of Aug. They're worried about the Zometa's effects on his kidneys' so they're stopping that.
And - the day after he finished a few sessions at the dentist - we're told that going to the dentist while on Zometa probably isn't the best idea due to a not-nice but unusual side effect.
Mayo will try to arrange it so that Gerry's worst phase - when he really needs 24/7 care after the high dose chemo and I need to focus entirely on HIM - will coincide when the kids are in NJ for 10 days.
I need to book those flights.
More numbers.
I'm numb with numbers.
Although Dr. Costas at Mayo did say that sometimes folks with Multiple Myeloma go on for long periods of time, it's not common. He wasn't hopeless or pessimistic, but realistic. We appreciate this - we've not based our marriage on false hopes, we're pretty honest with each other. It seems this is the best way to continue - hopeful but realistic.We were told what the doctor at U of M told us - but the blow seemed softer somehow. Probably because we had heard it before and we were waiting for it. I recorded it on my iPod, but I think I screwed it up. Damn.
Dr. Costas was frank. He said the time frame we're looking at is a couple of years.Me: A couple of years?Gerry seems as if he hasn't 100% absorbed this. Sweet JC, I haven't either. Who could?
DC: A couple.
Me: As in - two?
DC: Yes, two.
I'm clinging to numbers, math, things that can be quantified. It was stressed to us that everyone is different, every scenario unique. All they can tell us are the averages.
My mind is filled with numbers and math;
Max is 9 and Hannah is 10.
730 days.
17,520 hours.
24 months.
We've had 15 years together
Married August 21.
Gerry was born 54 days before my brother, Jim.
Mom's birthday was May 24.
Useless numbers.
Since our appointment with the social worker is tomorrow morning, we decided to drive home and save the $$ on the hotel. More numbers. We leave at 7:30. Home, if lucky, by 1:00 ish.
We did stop on the way and had a very good dinner - 1 down, 729 to go? Don't you DARE tell me not to go there - How can my mind NOT go there. I won't dwell there, but I can't help but peek inside, and don't try to stop me. You're not the boss of me. So there.
It was a long and quiet ride home to get the kids, and thank our friend who'd watched them for us. Thank you Jane, thank you Cora - thank you so much!
This has come on very quickly - as you know - and Gerry's in stage 3. That was news to me, but Gerry seemed aware of it. He's better read on this than I am. 3 is worse than 1.
Mayo wants to do the stem cell transplant sooner rather than later (he's responding very well to his medication - yay - and they said there's nothing really to be gained by waiting 3 months) so it may begin to happen as soon as end of July / beg of Aug. They're worried about the Zometa's effects on his kidneys' so they're stopping that.
And - the day after he finished a few sessions at the dentist - we're told that going to the dentist while on Zometa probably isn't the best idea due to a not-nice but unusual side effect.Mayo will try to arrange it so that Gerry's worst phase - when he really needs 24/7 care after the high dose chemo and I need to focus entirely on HIM - will coincide when the kids are in NJ for 10 days.
I need to book those flights.More numbers.
I'm numb with numbers.
Labels: cancer, kwc, loss, love, multiple myeloma, numbers, time
posted by Annie at
Wednesday, June 13, 2007
58 Comments:
this might seem odd but i think you lead an amazing life. the things your write are so detailed. i love it because it is never boring like my teachers. :-)
May these couple of years last forever. Best wishes to you and your family.
Diane
Northside Knitter
San Jose, CA
Annie, I don't know what to say. My best thoughts, wishes, and prayers are with you, Gerry, Hannah, and Max.
Annie, All of us have our arms wrapped around you and yours in a virtual hug.
Annie, what can one say that would give you comfort...... I don't think anything really could right now. Even though you and Gerry don't want to cling to false hopes please don't give up ALL hope. Amazing things can happen in the course of cancer treatment.
Ten years ago, my then 80 year old great uncle was given only 6 months or so to live. During an operation to repair what was thought to be a bad hip joint cancer was found throughout his bones and lymph nodes. His doctors recommended to his family not to even bother with any treatment as the cancer was advanced and he was quite old. Well, he decided to go with an experimental treatment and celebrated his 90th birthday a couple of months ago! He did have to go through the treatment 3 different times but has been cancer free for about 4 years now. No one expected him to live but he did and he is doing very well indeed for someone 90 years of age, he still lives on his own in his own house.
So, even though you and Gerry are very realistic - there is always hope.
Ah...what to say...well the usual, I feel your numbness and devestation and pray for a miracle for Gerry. But do remember the numbers...the numbers of doctors searching for a cure, the numbers of people who care about your family, the number of true miracles which happen and continue to happenfor reasons non of us understand. Go forward one day at a time knowing that your family is not alone. Count those numbers when your head fills with the hard numbers.
hugs, hugs, and more hugs.
I won't tell you not to go there with those numbers. You've got to so you can wrap your head around the news. Just don't stay there!
I'm sorry they had the same news for you. I'm gonna go sit in my shower and continue my cry now. My love and prayers are with you and your family!
Well, crap - that was not really the answer any of us were hoping for. On the bright side, from the "very dark humour department," you both can now say "I can't do that - I have cancer/Gerry has cancer." I read a story not too long ago about a couple who started saying no to things they didn't want to do (boring social obligations, etc.) after the wife was diagnosed with cancer, and I thought that sounded like a nice gift to each other.
'Hope springs eternal' is not a cliche here. Surely would help you if you found a day spa or at least a hot tub. A soak in mineral water surely would help your feeling of well-being have Hope.
Just delurking to say that my heart and my best wishes are with you and your family.
Big hug
Annie, your posts speak to me in such a direct way. My sister has recently been diagnosed with cancer in her spine, and the prognosis isn't good either. You have a gift for putting into words the jumble of things going through my mind. Even as you are working through your own grief and pain, you are helping others, and I thank you.
I've been reading all along, haven't commented because I've been at a loss for words. But I have to at least let you know you have another supportive reader, hoping for all the best and sending best wishes.
My heart really goes out to you and your family. I keep hoping the news will get better.
Much love to you and your family.
I am another long time lurker...I honestly wish that I was close enough to offer help. Just know that you and you family are in my heart.
Peace, Blessings and a Big HUG to all of you.
Well, to put it simply, that sucks. I wished I lived closer but as I don't I'm sending a huge cyber hug your way.
Here's hoping the numbers are stacked in your favor.
only one number- you have our 100% support. be strong. sorry about the bad news.
Annie, your number analogy is so touching - it is hard to make math touching....... I hope you (Gerry) beat the odds. Hugs, Tara (Hale, Burke, Reid and Joe too)
I am so sorry to hear your news. You are in my thoughts and prayers. As the wife of a cancer sufferer myself, all I can say is the wishes and support of others, even if you don't know them, can help. Let yourself ask for the help you need. And enjoy the days as they happen, without anticipating the worst (if at all possible). Your time together, which hopefully will last many years, is too precious to spend worrying about what might be. That has been the hardest thing for me to wrap my mind around.
Your family is in my heart and my prayers.
Annie, You do what you need to do and go where you need to go. Numbers, lists, cursing, holding hope or not, whatever... You have my love and support and all my best wishes for you and your family.
I'll keep hoping and crossing my fingers. And offering whatever support I can give.
Annie,
I know that there isn't a single thing I can say to help. Please put me on your list of people who can help out; I'm north of you a bit, but not so far that I can't do something.
And, do take my friend Keri up on her offer of help - she's walked a very similar path and is a bundle of knowledge that can be invaluable.
Drop me an email when you've got time (no rush) and we'll exchange better information than blog sites.
I don't know you, you don't know me, but, from one Annie to another, my heart aches for you and your family. Life can be cruel. When it is impossible to make sense of a situation, to figure out how or why, it becomes natural to cling to what is solid, the numbers. When questions like "why us" pop up, there is no answer. But "how long" has an answer for you. Cling to that as long as you need something to cling to but never give up hope that you and Gerry can beat the odds.
You guys are in my thoughts and prayers.
Just ignore the numbers and give your family what it needs the most right now- love, comfort and their mom.
annie:
though i think of you often, it's rare that i comment, because what can i say that others haven't phrased more eloquently? all i can tell you is that my thoughts are with you, and i wave to you on knitty gritty.
if there's anything that you need from the east coast, please let me know - i'll be happy to send you whatever the midwest can't provide for you.
all four of you are so strong - i truly admire your family.
~marni
My thoughts and prayers are with you and your family. You are an everyday hero of mine.
Annie:
I am at a loss for words. Just know that I am sending you virtual hugs and my thoughts and prayers.
Susan
Annie, I have been reading your blog but never posted until now. I am no stranger to crappy statistics as I was diagnosed with breast cancer just last February at 34 years old. I always think the way you were describing-in numbers. No one can tell you how to think and feel because they are not you no matter how hard they try. You also never know how long someone has to live on this precious earth, no one can say for sure. Miracles happen every day right before our eyes. I will keep you and your family in my thoughts and light a candle for your husband.
Annie - I believe this is the first time I've commented on your site, but I have been reading your blog for quite some time now. Please know that I am keeping you, Gerry, and the kids in my thoughts and prayers. I can't even begin to imagine the heartache you're going through right now.
I do not have words. But my heart is with you.
Punkin in Oregon
I can't think of anything to say, other than take care of yourselves as best you can.
Oh, Annie, I suspect there's nothing I can say or do that will help (short of moving to St. Paul and being your housekeeper for a few years!). You have a lot of support in the real world as well as the vast blog world. Lean on everyone you can (as you've been there for others, I'm sure). My heart goes out to you and your lovely family.
Regarding your previous comment ("even when it sucks like a hoover, life is beautiful. Put THAT on a pillow..."), I'm weirdly compelled to teach myself to needlepoint and make you said pillow.
I wish I could go to Amazon dot com and buy a huge box of strength for you and your family. You all obviously have a lot, but a little extra, from an internet friend might not be unwelcome.
I typed a bunch of stuff. It looked stupid when I was done with it. I erased it.
I think the universe may owe me some years-of-loved-one's life. If so, it can pay its debt directly to you and I'll be happy to call it even.
I'll keep reading you here and praying for y'all (such prayers as a heathen has) and crossing my fingers and all that.
XOXO
There's not much to say or offer to ease your pain and allay your fears. There are a lot of us with open hearts and ears for you.
I' so sorry tohear your news. I wish there was something I could say or so to make things better but there really isn't is there. Hugs to you and your family
Delurking to say that I'm so sorry about the news. My father-in-law died of this a year ago, but his case was complicated by his stroke 7 years before. Doctors didn't want to do a transplant because he wasn't strong enough to survive that. I hope you and your family are well during this tough time.
My heart is breaking for you. I don't know how you have the courage to write about this in the same great way you've always written about your life's work. You seem more well put together than I could be in these circumstances. Your children will value that some day when they look back on it all. They'll remember how strong you were, Annie. YOU ARE AMAZING.
Oh, Annie. I am so sorry. You keep on counting those good dinners together, and I'll keep hoping that those numbers go up and up and up...
That sucks. I can't fathom how much, exactly.
I am so sorry, Annie. My thoughts are with you and your family.
Live those days you have. I know I don't have to tell you that. It's more for my benefit.
Peaceful, cool blue vibes coming your way. (It's what my sister and I would say to each other when one of us was having a panic attack.)
I read your post and burst into tears...count your number, scream and cry in your car, do whatever it takes to carry you through. Last week I wanted to buy a luminaria at our Relay for Life "In Honor of Gerry and Annie" -- but I didn't (but I sure was thinking of you!). Next year I will, and the year after, and for years after that. And I pray that they will always be "In Honor Of ...".
Thinking of you all -- Nancy
Annie, I wish I had words that were remotely adequate to express how much I am feeling for you and your family right now. I've been following along and searching for the right words. They fail me. Please know that I'll be thinking of you, Gerry and the kids and sending all my prayers/good vibes your way. If you happen to need anything from the state of Texas, I'm just an email away.
I've been knitting coffee cup mitts for a Relay for Life fundraiser this week. As I knit, each mitt in a different cancer color, I think about the individuals and families affected by this insidious disease. Tonight I will cast on a burgundy mitt in honor of your family. Please know that good thoughts will be knit into each stitch.
On a brighter note, I could not resist your 'Knit for Brains' swag. I've ordered a sticker for my guitar case, a large coffee mug, and a shirt. I live in what seems to be the black hole of the knitting community (Delaware) and am hoping that by advertising my addiction I might attract others of the same persuasion. It's either that or hang around AC Moore, and your shirt is so much cooler!
All I can say is God Bless You. They say God doesn't give us anything we can't handle. Don't you wonder sometimes if God knows much more about us than we know ourselves? May God give you the strength to handle all you are being dealt. I know it isn't easy for Gerry, but you will be the one left on this earth to carry on. God Bless You and keep you strong!
When you hear that someone you love only has x amount of time left, realize it's only a guess. My mom passed away from leiomyosarcoma about a year and half ago. Her doctor had given her only 2 months when she left the hospital to be in hospice care. However, she lasted for 6 months. That was after beating the odds for this disease for over two years and working most of that time. Doctors at this point can only guess on "how much time" you have with your husband. The best thing I did was just tell my mom every time I saw her, I love you. The living that gets done in that remaining time is sometimes more meaningful that all the previous years. Everyone's prayers and thoughts are with you and your family now. Knowing you are not alone is sometimes the only way to cope from day to day. Bless you.
I am so sorry. My thoughts are with you and Gerry and your children and your family. You must deal with this however you can and if that means counting numbers then so be it. No one has the right to judge you. No one has to tell you the 'right' way to deal with this because there is no 'right' way. There is only living with it and trying to get through it as best you can. I hope this blog helps you express what you may feel that you cannot otherwise.
Of course your mind went there. Mine did when they said that they thought I had a super-rare, super deadly kidney cancer and I'd be dead in three years or less last fall. How can it not go there? It was a horrible week, and then they all changed their minds and said it wasn't. Awful, awful, just freakin' awful.
I should've known when I told Hubby about it the other night and he got that tight look he gets when he knows a patient doesn't have good odds. I just chose not to believe him, but he's usually right. *sigh*
I wish I could give you a real hug. If you still decide to come to Threadbear, I will. I'll give you a huge hug, and you can come crash at my house or something. I just wish I could do something to help.
Ohhh.. ((hugs)) for you and for Gerry. You are all in my prayers.
There is nothing to say. I'm thinking about you.
There's a song that comes to mind. Holly Cole sings a version of it.
"Cry if you want to,
I won't tell you not to,
I won't try to cheer you up,
I'll just be here if you want me
to be
near you."
Hugs.
All I got is
::hugs::
I am so sorry. And keep on doing and thinking and being exactly what you need to do and think and be. Sending good thoughts your way.
Life is not fair, wasn't meant to be, but the universe is abundant. I hope it showers you with unexpected blessings in coming days, weeks, years.
Annie, I've read everything I could of your writing, and have recently danced this cancer dance with my beloved mom. Can't imagine doing it with my husband. I read, now I don't remember where, that this kind of time -- which is a time of trauma, there is not another word for it -- kind of forces your brain into a sort of autism. We really become somewhat autistic with trauma and grief. Probably why knitting is so addictive at these times. And numbers. And facts. Handles for our minds. Grab hold of them. You need them.
Having said that, I will say my father-in-law lived much longer with multiple myeloma than predicted. And my mother lasted much less time with her cancer than predicted. The numbers are actually a bit meaningless.
I have no real advice other than to trust your gut in deciding the best way to spend every minute, and never question your decisions. Or try not to.
You have loved well, obviously. Finally, that's the best we can do.
Gigantic hugs to you and yours, and thank you for all you've given, including writing about your experience here.
Having been here with Dad I wouldn't dream of telling you not to step inside the numbers sometimes. You can't help it. there is no real advice to give on this subject, just live each and every day with Gerry and the family to its fullest pack all the love and time and all that good stuff into it; make those memories that will last a lifetime not only for your kids, but for you. As you know, my heart breaks for all of you and what you are going through. Know that you are in my thoughts constantly and that Gerry and the whole family are in my prayers every night. If there is anything at all you need, please don't hesitate to ask, anything from support or information from someone who's been on this roller coaster and survived, much more somber, missing my father deeply, but still going on as life has to, or just a cyber hug from far away. I'm here for you whatever I can do.
Hi Annie - I am so sorry to hear this news about your husband. I am a cancer survivor and wanted to let you know that I have 2 friends with stage 3 multiple myeloma, both of whom had transplants and are out of treatment at least 4 years, and both of whom are in remission and doing great. You would never know they were sick. Try to stay off of the internet and the scary statistics. I was told I wouldn't make it when I was diagnosed and I'm cancer free almost 5 years later.
You really never know. Everybody responds differently to treatment. The doctors aren't god...As one of my doctors told me when I asked him what my chances were to live: "your chances are either 100% or 0%." I honestly don't think anyone can predict better than that.
Best of luck and love to you and your family.
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