Tuesday, May 29, 2007

Man Proposes

Today was rough. We met with a doctor and social worker at the U of M's Bone Marrow Treatment Clinic, they discussed treatment options (really, only one option) and their words reinforced what we'd read - but not really digested - before.
The average survival is more than 3 years after the disorder is diagnosed, but survival time varies widely depending on the features at the time of diagnosis and the response to treatment. ...

Because multiple myeloma is ultimately fatal, people with multiple myeloma are likely to benefit from discussions of end-of-life care that involve their doctors and appropriate family and friends. Points for discussion may include advance directives (see Legal and Ethical Issues: Advance Directives), the use of feeding tubes, and pain relief (see Death and Dying: Choosing Treatment Options).
I took notes today - I know I did - but when I look at them I find them completely confusing. I need a translator to read my notes.

It's like in college when I took my zoology notes in French - which I was failing - in the vain hope that I'd improve in both classes. I didn't.

The doctor we spoke with was very nice, if soft spoken. I wish I could have heard what she was saying better.

It seems so inelegant to keep saying, "Huh?!" when someone is telling you that the love of your life has incurable cancer.
She did her best, we definitely had some kind of a delayed reaction to her words.

Huh? Wha? Excuse me?


The whole thing was very surreal.
I noticed a sign in the elevator explaining that translators would be available for patients and family members. I wonder if I can get a medical-to-English translator?

So - on to the good news. Hmmm, what IS the good news...? [sound of crickets]


Well, Gerry's young, and he's pretty healthy (except for this Multiple Myeloma garbage) so he should respond well to treatment.

It seems that sometime in September they'll remove stem cells - they need to get at least 2 million, 5 million is what they're looking for. (A million cells here, a million cells there, and pretty soon we're talking about a mess o'cells.)


This is where I get foggy.

I seem to recall something about removing the cells, giving Gerry some high dose chemo and then putting the cells back IN the bone to rebuild the marrow that they've destroyed with the chemo. Of course, they're aiming to destroy the plasma cells, destroying the marrow is just a little extra touch.

And this is how they'll rid Gerry of the cells causing the myeloma - the bad guys. (If we don't fight them over there... well, you know how that ends. At least we can say with full honesty that THEY attacked Gerry.)


When all of this is done, the "life extension" (which sounds like something that bald men order from late-night TV) would be from 3-5 years. We're both still wrapping our minds around this.

T h r e e - t o - F i v e.

How much extra can we get for good behavior?


In our current medical climate, 3-5 years is a long time. Of course, not as long as it would be if we had a prez who actually believed in stem cell research, but a lot can happen in 3-5 years.

Right? Tell me I'm right.


Apparently there are two markers which portend a person's chance of getting this illness, and our Gerry has both. Always the overachiever. According to the doctor, this would put him in the shorter end of the 3-5 year scale. A lot can happen in 3 years, right? Right?

We both gulped hard - we were very adult - we didn't cry (at that moment) and Gerry was amazing with his stack of test results and envelope of paperwork. Later at home he asked me if he seemed obsessed with his manilla envelope - not really.

Manilla envelope = vague sense of control over this thing.

I have a database, he has a manilla envelope - each of us clings to our own coping mechanism.


Of course, just before we left we discovered that our insurance doesn't want Gerry to go to U of M for treatment. They prefer the Mayo Clinic. I don't know WHAT we prefer - but I am looking forward to meeting with the Mayo folks and getting a second - perhaps clearer? - opinion. How clear they can be when so much is in question is not - clear.

I have to say that this whole thing sucks. Sucks for Gerry, sucks for all of us. We're ready for that metaphysical infusion of wisdom and clarity, Mr. DeMille...

S.S.
We're dragging the manilla envelope plus every family document we've acquired in our 15 years of marriage down to Social Security tomorrow when we go to convince them that yes, he is sick and cannot work.

There's a 6 month waiting period from application date until disability payments begin - ch and ching - so the drunken sailor spending will have to stop. Actually, we're spending like a very sober sailor, I'm being facetious. The small extravagances aside, we're a frugal lot.


I think I scooted into "dealing with it mode" with alarming speed. Hmm, maybe THIS is my coping mechanism? Or perhaps I'm kind of in denial, but in my heart of hearts I feel that Gerry's going to be in the 10% that makes a good, full, longer-than-five-years recovery.

And you know I'm never wrong about these things.


Immediately I began making plans for turning our upstairs office into a faux guest room, making space in the basement for another sofa bed in case we need it, and seriously doubting the sanity of adding a bathroom when we may need the money for - well - getting through this.


I wish we had unlimited money - don't we all? - so I could just take time off and be with Gerry. I'm doing quite a bit of that this summer, but bills are bills. Ours aren't going to stop any time soon. The last thing I want to do is cancel teaching dates, but looking at my Fall teaching schedule I'm getting a little scared about being able to be with Gerry when he needs me. We were told by the Social Worker that now is the time rely on friends and family in the area.

This is the point I broke down sobbing in the office. (No, not when they told me that the worst case scenario is that Gerry is looking at 3-5, no, I cried because we'll have to get help. Lovely.)

And what a helpful thing bursting into tears is - if only I had been alone in the car.


Coming on the tail end of our solo Memorial Day Weekend, we're feeling rather isolated. How Little House on the Prairie of us.

KNITTING et al
Part of me is happy to be going to TNNA on Thurs. I'll see a lot of friends, teach some classes - work is good for occupying the obsessive part of the brain, and do some schmoozing. I'd put aside the idea of trying to pitch a book to anyone there - I'd been playing with the idea of self publishing a color book.

But now all I can think is that I need - really need - to find some large scale project I can do here at home without a lot of travel, yet still make enough for mortgage. Something good will fall in front of me (which is why it's a good idea to stop the insane crying before I hit it with my PT cruiser.)

Another part of me is afraid I won't be able to face ANYONE without bursting into tears. Or vice versa. This has been known to significantly reduce the enjoyment of a class, so I promise not to do that. They have wonderful drugs for that now.

But I can't promise that I won't have a lot of "bathroom time" during the weekend. My own little porcelain, tile & chrome oasis. I should probably think about renting a car just to have something to sit in & bawl.

I think I may be avoiding some of the parties. On the other hand,
can you say, "Open Bar?"

Wish us luck tomorrow with the bureaucrats - another language I never mastered.

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87 Comments:

Anonymous said...

I am so sorry ((((hug)))) I am still praying for you and your family.

Brenda

May 29, 2007 11:10 PM  
Jocelyn said...

I'm so very sorry, and I'm sending the most positive and healing of thoughts your way. And I'll be voting for every measure that supports stem cell research!

May 29, 2007 11:23 PM  
Anonymous said...

Annie - words fail me. I know there are a lot of lurkers like me who are keeping your family in our prayers. Cry when you need to.
Don't forget to let the kids cry too...
Beverly

May 29, 2007 11:33 PM  
Amy said...

Annie - and Gerry - and the kids:
Soooo sorry to hear this. It sounded like a small bump in the road up to this.

Go to the Mayo if you have the chance - if they think it might help. They are amazing there...but schedule an appt. immediately - it will take weeks to get in (like maybe 6 weeks).

Good luck with the Social Security folks. It's a long haul but at least there will be regular money flowing in a few months.

May 29, 2007 11:46 PM  
Maria said...

If it makes you feel any better, Mayo is an amazing place. They're organized and they really do care. We've been there in somewhat the same situation. Besides, it's the best medical facility in the world and it's only about a hour away.
Also, why do tough prideful people like us think we can't cry around people? I HATE to cry. I don't think it's cathartic at all. Yet, people really do care, and you'll find that out at TNNA and you're around your peers. Knitters are the best people in the world.

May 29, 2007 11:52 PM  
Maxly said...

Hi-

Delurking to let you know you and your family are in my thoughts.

Maxly

May 30, 2007 12:19 AM  
Anonymous said...

God bless you and yours, Annie.
I feel stunned but my heart goes out to you and your family.
Punkin

May 30, 2007 1:20 AM  
Auntly H said...

Annie,
I feel funny saying this from Austria, having never met you in "real life," but you do have a friend in MN. I'll be back there at the beginning of July. And really, truly I will do what I can to help out. It's not the same as having old friends and family around, I know, but well I can sub.

Mayo has an excellent reputation. The distance makes it harder, but they do some more 'out there' treatments, I think. Well, go and see what they have to say (and whether you can hear them better).

I should switch to email before I fill your whole comments page. More soon.
{{{{hugs}}}}

May 30, 2007 1:27 AM  
Nancy said...

You might consider getting in touch with the American Cancer Society. They may have some counceling resources to help you, Gary and the kids.

SS disability is sometimes hard to get... but it sounds like you've got all the paperwork you need. If need be, hire a lawyer who specializes in this. They can expidite matters. Also, Gary might qualify for back payments starting from the time you first apply.

Good luck.

May 30, 2007 2:31 AM  
...e... said...

Annie,

1. you are fortunate that you can cry--take advantage of it a lot. don't even give it a second thought, it's what allows you to go on.

2. don't count on social security. hire the lawyer, for sure, and do whatever you have to, but don't worry about it further, just continue on. i have heard it can take longer that one can imagine, that's probably what the social security person was telling you.

3. continue to blog, blog, blog. remember, your friends in the area aren't just in MN, the blogosphere counts too. i've seen amazing things happen in that regard, just trust the blog like your best friend and they will appear.

4. what would that ideal project look like? I mean, what kind of thing, a commission for a magazine? a best selling pattern? what would work best in these circumstances?

5. some people like advice, some hate it, which are you? if you like it, good, you'll get innundated with it in comments for sure; if you don't, get that fact out there right now and maybe stem the tide some.

6. don't worry about answering emails and such. people understand.

7. and most importantly, your heart of hearts is always right. always. listen to it and obey.

May 30, 2007 5:51 AM  
gina said...

The Mayo Clinic is a wonderful place--if such places can be wonderful. They are often at the cutting edge and they are one of the top facilities in the country. Please do tell whomever you are speaking with that you need to hear it in English if you are having problems understanding your options. The road ahead will not be easy but you have many, many people who are behind you in this and you need to know that there are many who care.

May 30, 2007 6:09 AM  
Samira said...

If you can, take along a voice recorder to record your conversations with the doctors. Some people find that helpful to go back to when hearing a ton of information at a time when it is hard to take it all in to begin with.

I hope everything goes as well as possible.

May 30, 2007 6:41 AM  
Sweet Camden Lass said...

You're in my thoughts. ~x~

May 30, 2007 7:23 AM  
Nita said...

When my friend was diagnosed with cancer, she brought me along to all the "what to do?" conferences so that I could take notes. Her ears were roaring so loud with fear, she couldn't hear much of what doctors said.

At least take a tape recorder, to remember what they mumble.

Opening to help, expressing the fear, realizing you can't do it ALL is very necessary so YOU don't develop some holding-it-all physical reaction. Sometimes you have to fall apart before you can put the pieces together in a new, workable way to handle this.

May 30, 2007 7:26 AM  
Lucy said...

I'm so sorry. I cried a bit for you. Your family is in my prayers. I completely understand the move right into coping and dealing with it - we all work though things in our own ways.

May 30, 2007 7:43 AM  
Karin said...

Hang on to being positive and remember that humans don't have expiration dates. Don't focus on the 3-5 years, focus on the positive and focus on living.

Karin

May 30, 2007 7:49 AM  
Penny said...

Annie & Gerry ... you are not really alone, and we will all see what we can do to help you through this (hmm.. how presumptuous of me to offer up the rest of the world) .. i know it really sucks right now that you don't have a large local network, we'll see what we can do .. i don't have any words of wisdom for you -- i am not you and can't at all know what you are going through .. i've had my own experiences and they are not at all what you are having so what do i know? cancer got my dad when i was 9 and we didn't know he had it.

all that said:
do what you can, when you can. don't feel bad if it doesn't all happen (but please try to check in on the blog when you can. i check rss feeds obsessively for your updates). as you said, man proposes ..

and also, please do not be afraid to ask for help... do not at all be afraid or embarassed to cry.

{{{{HUGS}}}}

May 30, 2007 7:53 AM  
knitting chaos said...

The Mayo is a really excellent facility. If you have to spend the night, stay at the Kahler. It is a nice hotel. Rochester itself is a very nice place overall. It really is not all that far away. Good luck in all this. The Social Security office can be a pain in the ass, but once you get through the paperwork, they are not all bad. Just keep holding on.

May 30, 2007 8:19 AM  
susanc said...

Annie: I just don't know what to say. I am truly humbled and I will keep you, Gerry, Max, and Hannah in my thoughts and prayers. I wish I had some wonderful words of wisdom, but I don't. Just know that there are a lot of people out there keeping you and your family in our thoughts and prayers, each and every day.

May 30, 2007 8:25 AM  
annie said...

Thanks everyone!

May 30, 2007 8:30 AM  
Adrienne said...

I don't have any sage words of advice but want you to know that I am thinking of you and Gerry and the kids.

May 30, 2007 8:43 AM  
Anonymous said...

Annie and Gerry and the kids,
just want you to know that all of you are in my thoughts and prayers every day...

May 30, 2007 8:45 AM  
Hockey Mom said...

Y'all are in my prayers.

May 30, 2007 8:47 AM  
anne marie in philly said...

(((((hugs)))))

one day at a time.

yes, GO to the mayo clinic.

yes, GO get help.

yes, CRY your eyes out.

yes, LOVE gerry and the kids and then gerry some more.

and we will be here for you in spirit, if not physically.

May 30, 2007 8:51 AM  
Anonymous said...

Delurking to say you and your family are in my thoughts. Mayo is an excellent facility, doing cutting edge work. Lots of knitters in the Twin Cities are in the medical community, at least at my LYS (Creative Fibers).
Hang in there, and hugs to you all.

May 30, 2007 8:53 AM  
Anonymous said...

You may want to check in with the Lance Armstrong Foundation (www.livestrong.org). They have a lot of very practical information for dealing with cancer.

All the best - hang in there!

May 30, 2007 9:04 AM  
Em said...

Annie, I don't really know what to say, other than there are stangers like me reading you blog, trying not to cry at work, praying for your dear husband and family, and laying plans to hug their own husband/wife/kids/pets very very tight when they get home.

May 30, 2007 9:16 AM  
Luise said...

You're in good hands, and the advice everyone's given is wise and could help. From the moment I read the diagnosis MM in your post I've been "waiting" for this one, holding my breath. It's a lousy disease (haven't found a good one yet).

Is there a grandparent, aunt, etc., who could hang out with you and help, esp. with the kids? The right extra body could be worth it.

I do know that medical miracles happen daily and huge changes are possible. In the meantime be strong, cry when you need to, and ask for help from the many people who are here for you, near and far.

May 30, 2007 9:20 AM  
lauragayle said...

Hugs, and positive thoughts and prayers are going out to and for you and your family.

May 30, 2007 9:29 AM  
Tracy said...

When my mother and sister had cancer, they found the people at the American Cancer Society to be really helpful and supportive. One good thing about cancer (as if there could be ANYTHING good about cancer) is that it breaks down the barriers between people whose lives have been touched by it. If you seek support from the kind people at American Cancer Society, you will see how very quickly those people will become your dearest friends, because they know exactly what you're going through.

And remember that there are so many of us out here, ready and willing to give you support whenever you need it.

May 30, 2007 9:32 AM  
EvieF said...

Annie please know that you are in our thoughts always. While we may not be in Minnesota, there are lots of us wanting to offer support in any way that we can. Please let us know if we can do anything for you and your family.

I pray for a medical miracle and hope that Gerry's youth helps him fight this disease.

I'm sending you a virtual hug. Take it one day, one step at a time and don't be afraid to ask doctors to explain things over and over.

May 30, 2007 9:45 AM  
Lynne E. said...

You have plenty to do, but you might contact the local bar association (listed in the phone book) to see whether they have a "pro bono" legal services program. If they do, they may be able to help, or at least be able to refer you to an attorney experienced in expediting Social Security disability claims.

Experience is critical. Many years ago, I volunteered for a California pro bono AIDS panel, and was given instructions on dealing with the SS "runaround". Although I didn't handle any SS cases myself, I think that the panel managed to cut through a lot of red tape in obtaining benefits for clients, who--at that time--had only months to live. Similarly, my experience with pro bono welfare clients taught me that it's hard to get information about SS benefits directly from the government--this is why an experienced lawyer is needed.

As I said before, you will probably find a support group to be extremely helpful, when you can find time for it. The crying at "odd" times seems pretty normal to me. The bad news that adds to your personal workload is incredibly stressful.

Also, I hope you won't drop the plan to add a downstairs bathroom, if you can possibly afford it. That is a "quality of life" item that will give Gerry the run of the house, and make things easier for everyone.

May 30, 2007 9:54 AM  
Gail said...

I am so sorry. You and your family will be in my thoughts.

May 30, 2007 10:11 AM  
Shea said...

Annie, I'm also keeping you in my prayers. I wish I lived closer so that I could help you out. Unfortunately, GA is a long drive to where you are. God bless!

May 30, 2007 10:16 AM  
Anita said...

We're all praying for you down in Watkinsville.

May 30, 2007 10:18 AM  
amyroz said...

My mom is dealing with mouth cancer & I can relate to some of what you are going through. I only have good things to say about the Mayo Clinic - we were able to get in within a week with a MD referral - and there for 3 days of appointments (a marathon for sure) Mayo likes to do there own tests, and it is a good "double check". My mom had a feeding tube put in in June & she considers it a blessing. (yes - a blessing) - she doesn't have to force herself to eat anymore - just pour it down the tube! She is a social eater - eats only what she wants to/whatever tastes good! (Like Cool whip for example)

Hang in there. You have a lot of support all around you.

May 30, 2007 10:30 AM  
Teri said...

Annie - Your family is in my thoughts. My heart goes out to all of you.

May 30, 2007 10:33 AM  
Carol said...

**hugs** The tape recorder is a good idea. I read somewhere that people can only remember about 1/3 of what a doctor tells them at any one go. Never mind when it is as distressing as this. For what it's worth, I'm cheering you on here in Canada.

May 30, 2007 10:36 AM  
martha marques said...

I had a "fatal" cancer 9 years ago (chemo, radiation, surgery) which recurred 2 years ago (chemo, big surgery, no more radiation...I've had my lifetime supply). My husband (in your case that would be you dear) was very good at being exactly where he was. When he was a work he was at work. When he was at home he was home. He was home more than usual, and our daughter (13 then) was around more than she is now (16 and I'm healthy). Neither one turned me into a tragedy...they were able to just be there with me when they were there. That was so helpful.

May 30, 2007 10:38 AM  
Fiamma said...

Hey doll - My heart goes out to you and yours. Hugs to you all. Look into this group as well http://www.cancercare.org/

XOXOXOXOX

May 30, 2007 11:08 AM  
PJ said...

As a second thought if finances are tight and you want to wait for the bathroom/kitchen remodel until you can do it exactly like you want to do it - how about a electric stair lift? We installed one for DH's grandmother and she had the use of the entire house! She loved it and her insurance paid for the lift, and the installation of the chair. Certainly Gerry would qualify for the lift and you then would have time to decide on the construction plans with no hurry.

May 30, 2007 11:12 AM  
beth02116 said...

annie- so sorry to read this. best wishes and thought with you and your family.

May 30, 2007 11:45 AM  
Bogie said...

Annie & Gerry,

I'm very sorry for what you're going through. I'm here to validate your feelings, whatever they are, whichever way they take you. I believe whole heartedly that you are right about stem cell research, the current administration, but most importantly that a lot can happen in 3-5 years.

My thoughts and prayers are with you.

--Janice

May 30, 2007 12:26 PM  
Cetta said...

I'm so sorry you've been dealt this hand.

I am on Social Security and I have one important word of advice: get a lawyer NOW. They work on contigency and they deal with all ofthe red tape for you -- which is the last thing you need to deal with right now. You can ask your doctor (if you have that kind of relationship with him/her) for a referral.

The sooner you do this, the sooner you will get the money.

Best of luck!

May 30, 2007 1:02 PM  
Anonymous said...

I'm so sorry to hear about Gerry's diagnosis. Hang in there the best you can...the fight is worth it and so much can happen in three years.

May 30, 2007 1:11 PM  
Anonymous said...

I'm delurking as well from England to say I'm thinking about you. If it's any consolation (!)our SS is tough but remember hang on in there you will get through it. I'm not sure we would ever need to hire a solicitor though!

Most importantly Please, please give yourself some "me" time at least once a week - not knitting just sit quietly even if it is in your local park, have an ice cream (? ice) and have an hour all to yourself. Sure you'll do the guilt trip thing at first but carry on. Get some crystals as well and an oil burner and get some positive thoughts building up. Accept all offers of help.

It's a b****** what's happened but you will get through this. xx

May 30, 2007 1:15 PM  
Melissa said...

Annie, my heart aches for you and yours.

I join the chorus saying nice things about Mayo. Very organized, excellent care.

And, I know I'm scary stalker woman, but I'm just up the road a bit, and am very willing to lend a hand if you need it! (mgaul at mac dot com)

May 30, 2007 1:21 PM  
Janice said...

( hugs )

hang in there!!!

May 30, 2007 1:43 PM  
Channon said...

Sometimes, there just aren't words to say what should be said. I don't know you or your family, but this stinks. Bad things do happen to good people, and you and your family and all the people medical and otherwise helping you on this journey are in my prayers.

May 30, 2007 1:57 PM  
Jess said...

Oh dear, I didn't realize MM was incurable. I'm so sorry, Annie. I don't know what else to say, but that you are strong and you can take whatever life throws at you, even if it is something this bad.

I hope you have fun at TNNA, that it's not all sadness.

May 30, 2007 2:04 PM  
Cindy in Happy Valley said...

Had to delurk to say I'm hoping for the best for all of you, but mostly to tell you that autologous marrow transplants have come a very long way and are usually quite successful. How do I know? I worked in medical research when they were experimental and my DH (then boyfriend) was repeatedly asked to provide his healthy marrow for the research. (His T-cells grew for them like crazy and they could make the samples go a very long way in their studies.)

Anyway, 3 - 5 years is very long in this kind of research. It is never standing still. Stay strong.

May 30, 2007 2:16 PM  
Anonymous said...

Annie,
Hugs, prayers, all good vibes and images of fighting warrior cells going in for battle in Gerry's body.

I'm so sorry you all have to go through this.

Best regards,
Sheri

May 30, 2007 2:46 PM  
SIMONA MERCHANT-DEST DESIGNS said...

Annie, my prayers are with you.

May 30, 2007 2:51 PM  
Marin said...

Darlin', my heart goes out to you.

My mom was sick (cancer sick)awhile back and all the medical stuff... well, I can't wish that on anyone.

It's scary and confusing and somewhere along the line, you learn that medicine doesn't seem to be so much a science as a cross between palm reading and art.

Cry as often as you want -- as often as you need. And know a whole bunch of people are thinking kind thoughts your way.

May 30, 2007 3:05 PM  
Mary the Digital Knitter said...

Annie,

I'm sorry the four of you are going through this and a lot of the load is falling on your shoulders. Take care of yourself, too, not just the others.

On a practical note, if you want to keep Gerry comfortable at home you'll need a bedroom and bathroom for him on the ground floor. Stairs may become very difficult for him to manage when he's weakened by chemo and stem cell transplants and stuff. And you don't want to stick him off in a upstairs or basement bedroom but keep him where the family is.

May 30, 2007 3:27 PM  
Yarn Thing said...

Annie, My heart goes out to you and your family. Please know that you are in my prayers!

If you need a shoulder to cry on...come on over to CO and I am here for you :-)

Thank you for the books btw! They are wonderful.

Take Care and God Bless You!

Marly
knitthing.blogspot.com

May 30, 2007 3:45 PM  
songbird3178 said...

Annie, I'm one of the many who read your blog regularly and feel I know you and your family, even though you have no idea who I am! I am praying for you, for what that is worth. I live in Rochester and work at the Clinic, which is indeed a wonderful place. If you end up here for a consultation please let me know if I can do anything at all for you. My email is songbird_31_78@yahoo.com

Kandace

May 30, 2007 4:27 PM  
Irene Johnston said...

Just another faithful blog reader that wants you to know that I am keeping you and your family in my thoughts and prayers. I am certain that with your wonderfully close relationship with your husband and children that you will have positive results. Hang in there and keep up the knitting, blogging and designing when you are able. The knit blogging community already appears to have reached out to you with some great advice and help. God Bless you and bring you peace in your suffering.

May 30, 2007 4:57 PM  
Judi said...

My thoughts and prayers join the many others that are being offered on your behalf. I won't give you any advice at all, but I will offer my services as a translator.

As a nurse and the wife of a stem cell transplant patient, I have been on both sides of the issues and truly understand what you are going through right now. Oddly enough, my husband also got sick shortly after we had moved across the country to a community where we had no ties.

No one with any sense would ever say that this is easy or pleasant, but it seems that there are many folks who would like to help ease your burden a bit.

May 30, 2007 5:06 PM  
Berry Gal said...

I am so sorry.... Your family is amazing and strong. Many thoughts and hugs are headed in your direction.

May 30, 2007 5:31 PM  
Kristin said...

You, Gerry and the kids are in my thoughts and prayers. In short, cancer sucks. I am a cancer survivor, but have lost too many people to different versions of the evil disease. Make sure you pick yourself up after the brake downs, and keep moving.

May 30, 2007 6:33 PM  
Pamela said...

I am so very sorry to hear this. I am sending good thoughts your way for you and your family. I have been through this with my sister. I know haw hard it is. I experienced the same thing with not hearing or understanding the doctors. It really helped me to have a tape recorder on during the doctor conversations.

May 30, 2007 6:41 PM  
Megan said...

I want to say something that might give you comfort, but I don't have the words. Please know that I'm thinking of you, and praying for the best possible outcome for Gerry.

May 30, 2007 7:05 PM  
Meira said...

Thinking of you and praying for Gerry . . .

May 30, 2007 7:22 PM  
no-blog-rachel said...

Oh Annie and Gerry, I'm so sorry. I don't know what else to say, I think some others have said it really well. Whatever way you decide to handle/deal/endure this is the right way, and know that there are a lot of us out here who are holding you in our hearts and prayers and thinking of you.

***Hugs***

May 30, 2007 7:36 PM  
Having a Knit Fitt said...

Just saying what everyone else has said.
This sucks.
Mayo is great.
Don't be embarrassed about crying.
((((hugs))))

Cate F.

May 30, 2007 7:46 PM  
grammilu said...

Love and support from us here in Alberta. Our thoughts and prayers are with you. We are rooting for you to come through this strengthened in all good ways.

May 30, 2007 8:11 PM  
hricco said...

Hi Annie,

I'm delurking to tell you I'm sorry to hear about this. My heart goes out to you and your family, I'll keep you in my prayers.

Hope you don't mind if I send big hugs your way.

May 30, 2007 8:32 PM  
Snarled Yarns said...

Lady, I'm crying with you. I barely got to the end of the post.
I will be praying for your family also.

May 30, 2007 9:24 PM  
Pam said...

I read your blog way more than I comment and I felt compelled to tell you even tho I don't know you, I'm thinking of you and your family alot lately.

I'm a crocheter, a bad knitter, but love yarn, as most of us do. Please know that there is a world of unknown support sending positive vibes to your and your family.

May 30, 2007 10:26 PM  
Ellen in Minnetonka said...

Thank you for sharing this journey with us. It may be a way for you to cope; it is also brave and generous.

Blessed be,
Ellen

May 30, 2007 10:48 PM  
Gingersnaps with Tea... said...

I am so sorry. You and your family are in my thoughts often.

When I was 15, my Mom was diagnosed with a terminal illness. We were given no real hope for a positive outcome. Beyond all expectation, she gradually recovered. I wish I could say that it was for good but she died when I was in my late 20's. Still, we had those extra years╔wonderful years.

You have to believe in the best possible outcome against all odds╔ you have to believe.

May 30, 2007 10:59 PM  
Susie said...

Think positively. Ask for help and accept what is offered. Push, push, push. Relax, relax, relax.

Over 15 years ago my sister was diagnosed with a type of leukemia(AML). A year and a half of chemo just bought time most of which was spent in and out of the hospital. She had no sib with matching bone marrow. She finally had a bm transplant from her daughter which at that time was unheard of and the rest is history.

Today she has grandchildren, has been a widow and found a second love and experiences something new each day. When her chances were 1 in 100 she always said, "Why can't I be that one?" She is!

May 31, 2007 12:05 AM  
KellyD said...

Annie, amazing things happen more often then not. I worked a bone marrow oncology unit in the past and I can tell you this: I saw some pretty miraculous situations. Everyone involved had one thing in common -- hope and faith. I can see you do too. And as in the post before mine Gerry can be that 1 !!

May 31, 2007 7:40 AM  
Harriet L. said...

Annie, I'm so sorry. My heart goes out to you and your family. I know how devastating a diagnosis like this can be, having gone through something similar a year and a half ago. On the subject of family and friend, they don't know how to help you, what to do for you, so whatever you ask them for is helpful to all parties. Again, you and your family are in my thoughts and prayers

May 31, 2007 8:42 AM  
Judith in Ottawa said...

Annie, more hugs coming from Canada. I was in St. Paul for a conference last week, and was very impressed at the beautiful community into which your family has moved. That peaceful enivronment has to count for something in this difficult time.

Thanks for recommending the Yarnery, I enjoyed visiting them. I'm also sure that someone from that local knitting guild who helped you unpack has read this post and will be mobilizing some hand-holding. Knitters know how to support each other.

May 31, 2007 9:59 AM  
Paula said...

Annie and Gerry, Thoughts of comfort and healing are coming your way. I've dealt a lot with Cancer - one of my daughers(diagnosed in kindergarden) and my mother.

The doctors fully expect you to say 'Huh?' A LOT. They won't even mind if you ask them to speak up. Another of my daughters has had a day by day prognosis since she was six months old (lots of medical problems). She is now 26. Gerry can FOR SURE be the one who does great!

Gerry is doing the right thing with that manilla envelope. Very smart man.

You will definitely want a bed and bath on the ground floor. We ended up putting my mom's bed in the living room. At first she hated it, but then she was glad because we could all sit and laugh together rather than have to come into her room.

Take crying breaks whenever you need. Take joy breaks too.

Hope to meet you Annie, when you come to Sacramento. Hugs, Paula

May 31, 2007 10:09 PM  
Donna said...

Oh Annie, I am so sorry. Those words seem so empty, but it's all I can say.

Don't feel so alone out in the midwest - something tells me you will have a larger support system rounding up as we speak!

Keep the good thoughts - Gerry will need the positive energy around him.

And 3-5 years is only a guess they can give because they truly DO NOT KNOW what the future holds. Each person responds differently. Don't hold on to those numbers.

You are all in my prayers....

June 01, 2007 6:48 AM  
Tania said...

I have always felt an affinity towards you since you are also a combination knitter. Annie, I cried then went over to my husband and hugged him, barely being able to explain my misery. These are those awful times when you hold it together because you have no choice. Vent at any of us when you need to.

June 01, 2007 2:01 PM  
Jen D. said...

Annie -

You and you family are obviously in the thoughts of many. I wish that there was something I could do for you. I can't even make myself imagine what it would be like to be told that I would not grow "old" with my husband. Strange when being "strong" is no longer a comfort. I hope you find what you need. Are there any other "supports" for families like yours that would allow you to stay home and just concentrate on Gerry and the kids? I hope so. My heart goes out to you, and as many have said, we're here in spirit. We are watching, listening, and reading, keeping you and yours in our thoughts.

Jen D.

June 01, 2007 2:06 PM  
earthday said...

Hi Annie,
So many of us are keeping you in our thoughts. I have to think that all helps a little. I know you're not overly religious. Nor am I. However, I heard a doctor speak recently who is one of the most successful pain management experts and he said that one of the things he has seen work quite often with cancers is "spiritual healing". He lists a handful of people and their phone numbers who he recommends. Sometimes you have to try everything, right?
He also has suggestions on diet and vitamins, etc. Here is a link to his site:
http://normshealy.com/newsletter/optimalRecommendations.asp
I know sometimes alternative doctors seem strange, but he was speaking on a panel with David Suzuki. I think he's quite well respected.

June 01, 2007 4:55 PM  
Jena the yarn harpy said...

I'm so sorry to hear this news, Annie. I will say a prayer for Gerry and all of you.

June 02, 2007 2:01 PM  
Anonymous said...

Annie,
I have been reading your blog for awhile now and knitting for longer, but wanted to let you know that my mom was diagnosed with mantle cell lymphoma about 18 months ago and is in the process of getting ready for a stem cell transplant as well, autologous (from her own cells). In first researching the disease it said she could hope for at most 7 years. In doing more research though and finding others who have it I discovered that this is an average number. No one really knows how long our loved ones have, no one but God. Stay positive and upbeat and live for the moment. There is no reason he cant go on and on. I have done a lot of research on what the transplant is going to entail in medical terms, physical terms and emotional terms for my mom and those around her. I have spoken to people who have been through it very recently. Please feel free to email me and maybe I can give you some of the info I have. My mom and I are people who need to know what is coming no matter how good or bad so we can be prepared. I will be praying for you, your husband and your family. I know how hard this is.
jennifer
jennifmay@sbcglobal.net

June 03, 2007 5:19 AM  
janine said...

Oh shit Annie ( pardon my french). It is easy to say it's not fair, but it wo't help will it.y aggregator stopped updating your blog about a week ago and I have only just found out about your problems. I hope things go well for you both. Please know that there is an army of bloggers out here, ending positive and helaing thoughts in your direction. Keep on fighting!

June 03, 2007 6:57 AM  
Tracy said...

The Mayo Clinic is EXCELLENT. In the last year I have accompanied two family members there. One illness not so serious, the other a life threatening emergency. Both were extended stays.

It is true Mayo's will probably want to do all the same tests over again. And that might seem a little bit much to endure, but please be comforted in knowing that they only do it because they want to take full responsibility for their patients.

I have never dealt with a medical facility that was so kind and mindful of the needs of the patient and their loved ones.
They really know what they are doing there. You get the feeling from them (docs, nurses, staff) that one of their prime objectives is to explain EVERYTHING to you in terms and language that you can understand. No need for a translator, they will explain it 16 different ways and dreawa you a picture if needed until you understand and they do it happily. No rush, you are the only patient that exists.

The town of Rochester is a dream. I swear every person that lives and works there has an extra hospitality gene. (or two) And they realize why you are there. They are extremely helpful and respectful. While in one of the numerous little galleries, restless and wandering, during my sister-in-laws 13 hour surgery the call came to tell my brother and I she was in recovery. We hugged, wept, whooped, and danced a jig, definitely not something most people do in quiet art gallery. Instead of getting strange looks from people, they were all laughing, patting us on the back and giving us well wishes. I swear the proprietor had tears in his eyes when he said, "They do good work there."

If you find yourself with time on your hands because Gerry is in treatment or testing, and you're a bit restless and can't sit any longer, you might want to take the self guided walking tour of the magnificent works of art that are literally everywhere. The main building (across from the Kahler) has the headphones and booklets.

Give the Pannekhocken (sp?) a try for good hearty nothing fancy homestyle food. It's just 2 blocks from admitting.

If you want any other suggestions, regarding food, hotels, and shopping, don't hesitate to ask.

BTW if they tell you your appointment is at 10:00, if you haven't been seen by 10:10, someone will be talking to you, you are NEVER left in waiting room limbo.

You're right, a LOT can happen in 3 to 5 years girl. Keep on keeping on.

June 03, 2007 12:34 PM  
Libi said...

Annie,
My heart hurts for you. For the pain, panic, frustration, fear, and anything else you're feeling right now. (I could list them all, but you know them well, don't you?)

I wish there were something I could do. I wish I could make your life easier, and take away the pain.

You have many friends, most of which you've never met. That's got to be good Karma, right?

Cry away, it's good for you.

June 06, 2007 7:43 PM  
dorothee said...

Oh my ... I don't know what to say. I'm sending hugs! You and your family are in my thoughts.

June 09, 2007 11:00 AM  

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