Mayo Recap
We've had our field trip to Rochester to the Mayo clinic (twice) and have met with a few people. Now we wait.
The good news is that Gerry's body is responding well to treatment, (even if his spirit isn't right now.)
He has a lot of pain, which makes everything much harder. One of the hardest things is convincing him to TAKE HIS PAIN MEDICATION, but slowly we're getting that message through. He's stoic, our Gerry.
(We just got a scrip for Oxi, god help us if he starts spouting Rush-isms...)
The bad news is that even though he's responding well, he's already in stage 3 Multiple Myeloma. These stage things aren't used that much anymore, actually, because they're so inexact. Gerry's frustrated because they keep telling him his numbers are good, and he feels like crap.
The worse news is that our second opinion at Mayo was somewhat worse than our first opinion at U of M. So much for second opinions. Remember this the next time you say you want a second opinion.
We met with a BMT (bone marrow transplant) Fellow at the Mayo clinic yesterday. He was very kind, very informative and easy to understand - thank heaven. And sympathetic. But no matter how sympathetic, there's not much you can do to sugar coat the phrase, "terminal illness"
Which is why I love Elizabeth Edwards - "LIFE is a terminal illness."
The 3 year life expectancy time frame we were given before was reduced to 2 years in this conversation - but they promise nothing, and guarantee nothing. It's life, not a radial tire.
The meeting was sober, but not somber. When Dr. Haman came in I asked if we should get out our noisemakers - she laughed. I babbled about my knitting until I remembered that we weren't there to discuss yarn. We were there to discuss how much time a bone marrow transplant may add to Gerry's life.
Who knows - he may respond miraculously to the treatment and we'll be dancing at Hannah's wedding - but the feeling we had from both doctors was more subdued.
Heads up everyone - Never, ever, complain about growing old in front of me.
Gerry and I are not being pessimistic, just realistic. And we are hopeful.
This is how we live our lives - we're frugal, pragmatic and realistic. We have a great marriage and a lot of fun together, but ultimately we see things as they are, and try to deal with them gracefully.
We can't change who we are right now just because it might make it easier to tell folks "We're SURE he's going to be in the 10% who have more than 3 years! We refuse to believe otherwise! [Not.]
We are who we are. Neither of us has ever been a fan of the 'failure is not an option' frame of mind. Humanity is our only option, and humanity = failure sometimes.
Faking something at this point would just be - very sad - and not what we love best in each other.
Mayo wants to do a stem cell transplant on Gerry sooner rather than later - they're shooting for very early August so that when he's in the deepest throes of recovery and needs me down in Rochester, MN 24/7, the kids will be in New Jersey visiting friends.
This is amazingly hard - I never knew anything could be so hard - and if it's hard for me, I can only imagine how difficult it is for Gerry. Dealing with this is hard - asking for help is hard - keeping the family running in a relatively normal way is very hard.
It still doesn't seem to have sunk in fully for either of us. I think we have to take small bites of this big meal to fully comprehend. We'll have a brief moment when it will dawn on one of us that Gerry probably won't see Maxie playing ball in a few years, may not meet Hannah's first date, won't be there when I finally run for president (oops, I didn't mean to let that slip out ...)
Small bites. Many, many small bites. And we both have the tooth marks to prove it.
Helping
A group of dear friends down in Georgia (former students and yarn shop owners - just amazing folks) are putting together a fund to help us cover the expenses that are adding up because - well, because neither Gerry nor I have been able to win as much bread as we have been needing. He's been out of commission, and I've been spending a lot of time taking care of him.
I'll post information on this as soon as they have their website up. Man does this feel odd.
I'll also have a pattern for the Emmy Dress (which I'm calling Red Carpet Convertible) up and available soon. It will be available for a donation - you can pay what you want for it - and that way I won't feel quite so begg-y.
For those who are interested, I have acquired a PO box so you can correspond with me via snail mail. I don't promise to answer, but I'll try. Chocolate is good. Maybe a chocolate Buddha?
Here's the info:
Finally, If any of you have written and I haven't gotten back to you - please forgive me! I read every email - many times - and they make me very happy and weepy. Life here is good, very good, but you guys are better.
We're definitely in the right place, though - this is the hotbed of Multiple Myeloma research, and the Mayo does 300+ stem cell transplants a year.
We're in very good hands. In spite of all of the crap, I think we still feel very lucky.
Okay, maybe not VERY lucky. I'm pushing it.
But I know we'd rather do this together.
The good news is that Gerry's body is responding well to treatment, (even if his spirit isn't right now.)He has a lot of pain, which makes everything much harder. One of the hardest things is convincing him to TAKE HIS PAIN MEDICATION, but slowly we're getting that message through. He's stoic, our Gerry.
(We just got a scrip for Oxi, god help us if he starts spouting Rush-isms...)
The bad news is that even though he's responding well, he's already in stage 3 Multiple Myeloma. These stage things aren't used that much anymore, actually, because they're so inexact. Gerry's frustrated because they keep telling him his numbers are good, and he feels like crap.
The worse news is that our second opinion at Mayo was somewhat worse than our first opinion at U of M. So much for second opinions. Remember this the next time you say you want a second opinion.
We met with a BMT (bone marrow transplant) Fellow at the Mayo clinic yesterday. He was very kind, very informative and easy to understand - thank heaven. And sympathetic. But no matter how sympathetic, there's not much you can do to sugar coat the phrase, "terminal illness"Which is why I love Elizabeth Edwards - "LIFE is a terminal illness."
The 3 year life expectancy time frame we were given before was reduced to 2 years in this conversation - but they promise nothing, and guarantee nothing. It's life, not a radial tire.
The meeting was sober, but not somber. When Dr. Haman came in I asked if we should get out our noisemakers - she laughed. I babbled about my knitting until I remembered that we weren't there to discuss yarn. We were there to discuss how much time a bone marrow transplant may add to Gerry's life.
Who knows - he may respond miraculously to the treatment and we'll be dancing at Hannah's wedding - but the feeling we had from both doctors was more subdued.
They asked, "What are you looking for in this treatment?"Realistically, though, we're looking for a little hope. And a little more time.
I answered, "A 50th wedding anniversary."
Heads up everyone - Never, ever, complain about growing old in front of me.
Gerry and I are not being pessimistic, just realistic. And we are hopeful.
This is how we live our lives - we're frugal, pragmatic and realistic. We have a great marriage and a lot of fun together, but ultimately we see things as they are, and try to deal with them gracefully.
We can't change who we are right now just because it might make it easier to tell folks "We're SURE he's going to be in the 10% who have more than 3 years! We refuse to believe otherwise! [Not.]
We are who we are. Neither of us has ever been a fan of the 'failure is not an option' frame of mind. Humanity is our only option, and humanity = failure sometimes.
Faking something at this point would just be - very sad - and not what we love best in each other.
Mayo wants to do a stem cell transplant on Gerry sooner rather than later - they're shooting for very early August so that when he's in the deepest throes of recovery and needs me down in Rochester, MN 24/7, the kids will be in New Jersey visiting friends.
This is amazingly hard - I never knew anything could be so hard - and if it's hard for me, I can only imagine how difficult it is for Gerry. Dealing with this is hard - asking for help is hard - keeping the family running in a relatively normal way is very hard.
It still doesn't seem to have sunk in fully for either of us. I think we have to take small bites of this big meal to fully comprehend. We'll have a brief moment when it will dawn on one of us that Gerry probably won't see Maxie playing ball in a few years, may not meet Hannah's first date, won't be there when I finally run for president (oops, I didn't mean to let that slip out ...)
Small bites. Many, many small bites. And we both have the tooth marks to prove it.
Helping
A group of dear friends down in Georgia (former students and yarn shop owners - just amazing folks) are putting together a fund to help us cover the expenses that are adding up because - well, because neither Gerry nor I have been able to win as much bread as we have been needing. He's been out of commission, and I've been spending a lot of time taking care of him.I'll post information on this as soon as they have their website up. Man does this feel odd.
I'll also have a pattern for the Emmy Dress (which I'm calling Red Carpet Convertible) up and available soon. It will be available for a donation - you can pay what you want for it - and that way I won't feel quite so begg-y.
For those who are interested, I have acquired a PO box so you can correspond with me via snail mail. I don't promise to answer, but I'll try. Chocolate is good. Maybe a chocolate Buddha?
Here's the info:
Annie Modesitt [aka Landy]Busy
1043 Grand Ave
PO Box 117
St. Paul, MN 55105
Finally, If any of you have written and I haven't gotten back to you - please forgive me! I read every email - many times - and they make me very happy and weepy. Life here is good, very good, but you guys are better.
We're definitely in the right place, though - this is the hotbed of Multiple Myeloma research, and the Mayo does 300+ stem cell transplants a year.
We're in very good hands. In spite of all of the crap, I think we still feel very lucky.
Okay, maybe not VERY lucky. I'm pushing it.
But I know we'd rather do this together.
27 Comments:
Annie,
Okay, I'll hit the Chocolate Buddha store in the morning! Is there anything special that Gerry would like sent along? A tempting food treat, music genre, flowering houseplant or something?
(I'm kidding about the houseplant, but serious about the offer. Oh, and kidding about the Chocolate Buddha store. I'm pretty sure we don't have one here).
Annie, you are so very generous sharing this difficult time with your readers. While it may seem awkward reaching out to others for assistance, by doing so you give us the gift of being our better selves. Thank you.
My hopes and thoughts are with you and your family.
That dress is GORGEOUS! I know the timing would have been horrible for Project Runway, but what were they thinking???
Is there anything Austrian you've been craving? :)
wow--i came upon your blog for the reasons that most people do (your wonderful knitting), and, when i read your blog, i was so touched to see that you're going through just what my friend karen is going through with her husband joe (http://joekaren.blogspot.com). the parallels in both situation and attitude are remarkable. he turned 32 just after his myelodysplasia diagnosis, which came on the heels of his first wedding anniversary. you and they just steel my resolve, along with all of your collective friends and family, to find donors and a cure. i hope gerry is in that 10 percent! meanwhile, i'll be subscribing to your blog and looking for those ways to help. we need you happy and at peace :)
Oh my gosh - that pattern is stunning! I always wanted a red convertible!
Glad you got a P.O. Box - hope it's a big one! :)
OH, Annie, I don't know what to say. I won't pretend to say I know how you feel. I am sending you a huge cyber hug!
Thank you, thank you, thank you!! for putting up the PO Box so that we can help you. I can only imagine that this is hard. But, if there are things (other than chocolate, that's a given!) that ya'll want or need, when you feel like you can, will you please let us know. Ya'll remain in my prayers.
BIG HUG
Becka
Mayo Clinic diagnosed my husband's breast cancer when the 1st local diagnosis was negative, So far he's doing great with the mastectomy 3 years ago. The rending, crying, screaming out, bawling, peace...it all has to happen, Annie. Hugs.
I still can't find word to help you, but the dress/top looks stunning.
It is a blessing that you moved...in ways you couldn't possibly have known at the time. My very best thoughts and hopes and prayers are winging their way to you at all times. (I lurk here every day!)
Reading your recent posts has just brought me to tears. You and your family will be in my thoughts and prayers (so I hope you will feel some little supportive thought waves flying in from Australia) I have been through some things the same, but no one can say they know exactly how you feel. I can't offer you help, except maybe tell you the things I should have learned from my hard times...1. to find the humility and grace to accept and ask for help (the flipside of "do unto others..." is to accept from others the help you would give to them if they were in your situation) and 2. Look after yourself - caring and supporting and watching and hoping and crying are all exhausting. Be gentle on yourself.
On the up side, are you fitting in a lot of knitting in all that waiting room time? (yeah, thats not much of an upside, but its hard to find a positive note to end on :))
God Bless (the happy singing God)
Megan
Annie -
We love you guys and are thinking of you. I will watch your website for ways to help BECAUSE WE REALLY, REALLY, REALLY WANT TO HELP ANY WAY WE CAN!
With Love and Healing Energy from two of your Chicago friends,
Tom & Wayne
Sending lots of love your way and you and Gerry will be in my heart and thoughts.
Annie, I have been lurking on your blog for a very long time and seldom felt the need to leave you a comment until now. I'm sorry to hear about Gerry's condition, and I'm here for all of you in any way you want. Being in research, I have to say that miracles are happening every day and I'll keep my fingers crossed for yours. I love the Emmy dress and I'm glad that you are making it available to the rest of us. I was actually going to ask you about it when I first saw it. Chocolates and prayers are going to be sent soon.
Great--now I know where to send the care package. :-)
I think that Emmy dress is freakin' gorgeous, and I know just the knitter who'll want it.
Please do what you can to get enough sleep. I know that sounds awful, but I found that without sleep, everything was worse last fall. Much worse.
Give your husband a hug from me. I wish I could be there and drop off a casserole or two.
I haven't been keeping up with the blogs lately. We have just found out that my father in law's throat cancer is back and he's got 3-6 months. It's miserable to feel like you have no control. I am so very sorry.
Annie,
Do you crave anything from South Orange or Maplewood, NJ? I'm coming to the Cities in the middle of July, and can easily schlep something if it's not too heavy. (Crappy wrists)
My Mom lives in S.Org, and I used to work in Maplewood, so both are easy places for me. fritzl234@yahoo.com
Dear Annie,
This is so tough. Try not to look at time frames (easy enough for me to say), but each individual day that you get to share together as a couple and as a family. Keep up the positive vibes. Who knows what the future may bring - hope can be a great healer too, especially bearing in mind that 10%. Keep a memory book of special times together; little anecdotes that you and your children can add to over the next few years.
On a harder to deal with note (are there more I hear you say), you may need to start sharing this sad news with your children soon, or at least before they leave for NJ. It would be so devastating if they heard it from someone who let the bad news slip by accident, before you have talked about it with them. Children are often more resilient than we give them credit for.
My thoughts and hopes are with you all.
Janet MF up in Yellowknife
I join my prayers & heart with your so-many other admirers, & agree with you that Eliz Edwards has it absolutely right - it's the living that matters. I've heard first-hand of so many late (later than yours) stage, definitive terminal diagnoses that were gleefully recounted by the survivors for years afterward. Yes, of course it happens - all the time! Lilly
(((Annie))). You and your family are in my thoughts and prayers. I admire your attitude and approach to this situation, and feel that I'm learning something important from your example. For myself, One Day at a Time works really well, and I pass that on to you. Sincerely, Lissy Friedman
my wife has just passed her third year after diagnosis of MM. We went to Little Rock Arkansas to the MIRT clinic, probably the most complete and aggressive treatment center in the world.
She has had two stem cell transfers and three big chemo's plus ongoing lesser maintenance. She has been in total remission since her last transplant.
We are busy planning the celibration of our 50th wedding anniversary next summer which will include all of our family. We just came back from an exploratory trip to resort in Mexico(well, somebody has to do it) and she is feeling fine.
The most important job is the keeper/dispenser of the pills and supporter. It is hard but it must be done.
A good support group is a must. My wife got a tremendous boost from meeting two people that had had MM for more than 14 years. It was the first really good news she got after her diagnosis. Find one and go to every meeting.
Good luck
I'm not good with words for this kind of thing, but I think of you and Gerry all the time. Thank you for posting the PO box number. Most of us can't actually be there to help you, so this is one way we can do something. I hope you have some sense of the numbers of people who have you and your family in their hearts and prayers.
Last night and this morning I walked in our Relay For Life to benefit The American Cancer Society. As they lit the luminaria and I watched the word, "Hope" being spelled out in candle light, I thought of you and Gerry. I'm sending continued good thoughts your way and wishing that "hope" becomes "reality" in the nearest of futures.
Please, please, please tell Gerry that pain is an expense his body can't afford right now. Pain is expensive in terms of energy and physiology. He NEEDS to take the pain medication.
If he is avoiding it because the side effects leave him unable to participate and enjoy being with his family, talk to your doctor and get a different medicine. There are lots of options. If he is avoiding it because the side effects make him sick, talk to your doctor and get a different medicine.
If he is worried about addiction, tell him that people who take pain medication for pain relief do not become addicted. They DO become dependent and tolerant,but that is very difference from addiction.
And for yourself, keep talking, it doesn't change anything, but it clarifies your feelings and lets you put names to them and that helps.
Annie,
I have only been reading a short time (I saw you on Knitty Gritty a couple of months ago and looked you up).
Over that time I feel as if I have known you a very long time and I have and will continue to pray for your family. If you don't mind, I would like to add Gerry's name for continual prayer at our church starting with next week's Mass celebrations. May peace truly be with you and yours.
Thank you all SO MUCH for your uplifting and exceptional comments. I do know how much you all support me - emotionally, mentally - it means quite a bit. THANK YOU!
Anon - I'd love to correspond with you if you're open to it about your wife's condition and her recovery. Annie at modeknit dot com, if you'd like...
Annie, my thoughts are with you, your husband and your kids. Words are so inconsequential. We met in Toronto (I did your workshop at Lettuce Knits and Village Yarns) and I was so impressed with your incredible spirit. It will serve you well now. It is so hard balancing numbers and the reality that you are told with the indescribable reality that is hope, miracle and recovery - even in the face of incredible odds. The most important thing is that you all have such a rich relationship and that is so important. Please take care of yourself. I will certainly pray for you and Gerry. I appreciate how honest you have been; thank you for sharing.
I wanted to offer a small ray of hope. My uncle was diagnosed with multiple myeloma in 2001 and given 6 months to live. He only passed away last month - 6 YEARS later. It's not necessarily forever, but it was certainly long enough for him. Hang in there.
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