We’ve sort of been waiting for this, expecting this, for a little over 2 years.
We’d almost convinced ourselves that it wouldn’t happen, even as we would take any opportune moment to remind each other (and anyone who would listen), “We’re very lucky, but the luck can’t last forever…”
Gerry’s IgG numbers are elevating.
We’d gotten used to the numbers either going down, or staying steady. Moving in no direction, static, flat.
Now they’re moving up from the 1,300’s in the Fall, to the 1,500’s in Feb, up almost to 1,600 now. That’ moving out of normal range, and is probably the harbinger of a relapse. Or not. Or it is.
The indecision of this disease, Multiple Myeloma, compels us to become VERY zen in our outlook.
I’m having a rough time myself right now. On our trip to Mount Rushmore Max and I developed bronchitis (he’s better, I still sound like Brenda Vaccaro) and Gerry picked it up on Tuesday. Max is better, I’m recovering, but Gerry’s feeling bad with nausea, headache, fever, chills – the whole enchilada.
In the midsts of this, the phone call from his Oncologist asking him to come in for another blood test feels like an out-of-body experience, as if we’re watching it on a made-for-TV movie. Maybe one starring Brenda Vaccaro?
Ireland?
I have a certain amount of – well, not guilt – but amazement at my hubris in taking my family to Ireland. I’d find myself thinking, “Who do you think you are? Taking your family to Ireland when you’re losing your health insurance on July 1. Shouldn’t you be saving every penny?”
I just don’t know.
We’re swapping houses with a couple in Ireland who are coming to St. Paul for their son’s law school graduation. Max & my tickets are paid for with frequent flier miles, I found a pretty good fare for Gerry and Hannah, so the total cost for the trip (figuring for extras) should be about $2,000.
For 3 weeks that seems like an amazing bargain, which quells a bit of my – ahem – guilt.
Now that Gerry’s MM numbers are moving in the direction we’d hoped they wouldn’t, I feel even more firmly that our trip to Ireland is the right thing for us to do. Life is finite, opportunities don’t always repeat themselves.
So upon our return to St. Paul what will we be facing? How long will it be until we’re back at the Mayo? Will Gerry need another stem cell transplant, or can he get by with a new course of a drug like Revlimid? How sick will he get? Will he have more pain?
One thing we will know is that we’ll face what comes next with the knowledge that we are united, a strong family and trying hard to continue to thrive & create memories every day.
We’re VERY grateful that although I won’t be covered by insurance, Gerry’s covered with that Social[ist] Security Disability Insurance & Medicare. Thank god that – without it I have no idea how we’d be getting through this period, between Gerry’s illness and my own reduced earnings due to my own brain-melting fibromyalgia adventure.
Folks have said really kind things to me, that I’m brave, or that I’m handing this with grace, but I feel neither brave nor graceful right now.
I just feel scared, self-questioning, feeble & weak. Have I missed anything? Oh, yeah, self pitying.
I woke up last night feeling terrified, too damned sick to give my family the full strength and comfort they deserve right now. Thankfully, the feeling passed when the sun came out.
I apologize for the purely self centered stream of this post. This is what trying to figure out how to keep a slowly sinking ship afloat looks like.
Once we’re bailed out a bit, we can decide in which direction we need to move.
Does anyone know how to sail?
In Happier News
Since neither Max nor Hannah had school today, it was the perfect chance for Max’s orientation meeting Breakthrough St. Paul (BSP). This is the program that’s been SO great for Hannah for the past 2 years, and which Max has been accepted into!
It was a GREAT meeting, we chatted about what Max will do over the summer, what classes he might take, and how he can begin working on some projects while we’re in Ireland (he wants to visit some castles, excellent research for a budding architect!) The best part was that Hannah was so proud of Max (and so proud of herself – she made it into the Breakthrough Leadership Program and will continue to attend BSP over the Summer & into the school year.)
One of the perks for Hannah is that she’ll get to go on a week-long camping trip to hone her leader (and follower) skills, and she may qualify for her own laptop to do her homework. It will be a new experience for her as we’re a Mac family and the laptop is a PC, but she was buzzing with excitement.
After the meeting we came home, and while Gerry slept the kids helped me change the storm windows and do some Spring cleaning. We have to get our house in shape for non-family to reside here for a month!
In Knitting News
I’m having a wonderful time working out a pattern for some Tabi socks (split toe socks.) It’s been one of the most fun, and one of the most challenging, patterns I’ve worked up. I’m trying very hard to make it intuitive, to allow the increases and decreases to follow a logical route, so I’ve ripped out this darned sock at least a dozen times so far. I’m very happy that I’m using worsted weight yarn!
Another ribbed and lace project, a cardigan, waits for me (the yarn is Louisa Harding’s Mulberry, it’s exquisite) and – of course – there is always the Gripsholm Jacket sleeves to return to. So much wonderful work – if only I could do it in a more timely & efficient manner!
A special note – while in Ireland I’ll be teaching a short 2-hour class in Combination Knitting at This Is Knit in Dublin! I’ll also be doing a book signing, and I’d love to see any Dublin area knitters while I’m there! The class & signing will be on Sunday, May 2. YAY!
Dear Annie- you owe no explanations to us about the choices you are making for your family. You can even complain w/o explaining. Those who follow your blog love you and support you as you struggle and as you triumph. That is what love is. xo-M
Go to Ireland. Go sailing around the world. Give your family the best memories you can create — you and Gerry are already teaching your kids the lessons of resilience. And remember to breathe — we’re out here rooting for you!
Go,Annie……Remember that fabulous trip to Paris with Hannah? Max needs the same kind of memories! You will all remember and treasure your time there as something special and out of the ordinary. Enjoy it to the fullest.
Keep breathing and go on. You are keeping your family together and giving your children wonderful lessons and experiences. I admire your spirit.
I wish I had wise words for you. Just sending hugs and good wishes to you and your family.
Going to Ireland sounds wonderful and the right thing to do. Your kids are looking forward to it and so are you. I can’t remember many things I felt guilty about years ago, but I do remember going to France by myself and a trip hubby and I took to Russia ,Georgia,Finland, Germany and France. A trip to St. John with a good friend and Jamaica with my sister and…. You get the idea.
Annie and family, you are in my prayers. Keep having fun and celebrating the great news about the kids and your trip. How I loved Ireland four years ago! I have a bit of yarn from McGinty’s yarn shop in Galway City. We stayed at their B and B. Take care.
Susan
I don’t think you’re self-pitying, I think it’s healthy for you to be able to express your feelings, concerns and fears. It’s better to express them than bottle them up. The fybro might be bringing your mood down too, I know it can make my friend Mary very low sometimes.
Your trip to Ireland sounds great. I don’t think you should feel guilty about organising a fantastic experience for your family. Enjoy every second of the time with Gerry and the kids!
Take care.
There is no doubt you should go to Ireland-it is important for you and your family to have some time that isn’t centered around illness, chores, school….I hope it is a peaceful and wonderful trip for you all. ANd kiss the Blarney Stone-who knows?
Reading your blog this evening made me think of the Michael J. Fox special on optimism that was broadcast last fall. As he was golfing with Bill Murray, he spoke on worrying less about doing the “next thing right” and just doing the “next right thing” what ever that may be for his family and himself. So it sounds like you are right there with Michael J. Fox regarding your trip to Ireland. Not only are you and your family heading off to a fabulous adventure, you are providing an opportunity for another family to have their own adventure. Can’t get anymore right than that! Good luck and have fun.
Ireland? Absolutely. For your family, for yourself, for your physical and mental health. No need for justification-just go!
I stumbled upon your blog when I was looking for your patterns, as you are one of my favorite designers. So sorry for all the health issues that you are going through. I have had fibro for over 20 years, so I know a bit about sailing while you have it, esp.when there are rough seas. You may find that you feel great in Ireland, and that may last for awhile after you get back. Makes the trip VERY worthwhile! Also, I was able to get health insurance designed for catastrophies only, with a $5,00,00 deductable, but it was not expensive, and they were not worried about any pre-existing condition. I figured I could put the $5,000 on a credit card if I had to. Fibro is devastating, have fun whenever you get the chance.
Go to Ireland with the family. Live. Love. Laugh. Life is too short to sweat the small stuff. In other words is it will make memories worth having it’s worth doing. Often we (meaning me) spend to much time wondering how things look to others or wondering if we’re doing the “right” thing or if we should be more thrifty (I’m originally from New England so that last is a real guilt button for me).
What we need to do is enjoy each day as much as possible without breaking the bank, leaving us homeless, or other catastrophic things — none of which are going to happen if you and the family spend some quality time as a family enjoying new sights, new places, and new experiences together.
Enjoy and post picture so we can vicariously enjoy your trip.
Living with life-threatening illness myself, I think that you are doing exactly the right things. You are getting along with life, and building memories… you will not regret your decisions to go to Ireland, to teach as you can, and to take care of your own health issues as you need to.
You may feel self pitying, but from the outside, you are an incredibly strong and resilient woman who is making the best of a difficult situation. Kudos to you. And your family too.
What a legacy both you and Gerry are building for your children. They are both obviously reaping the benefits of it right now. Like I said, you are doing exactly the right things, and at the right time.
My thoughts and heart are with you.
Annie, the trip to Ireland sounds like a Godsend – what an opportunity to seize the day and how wonderful to have worked out a house swap!
And, good for Max and Hannah on BSP – what a great program to get into/have gone through. You have two wonderful and talented kids!
If Gerry feels up to Ireland, then yes of course you should all go and have a wonderful time – it does sound like such a good opportunity. I suppose, from experience, that it will depend how fast his numbers rise, and how much energy he has. It’s a long trip! BTW – have you checked if he can get travel insurance? I had real problems finding a company that would let my husband travel overseas with MM.
I think everyone has already said the things I wanted to say, so just consider this another post affirming your decisions to do what you feel is best for you and your family and letting you know that you shouldn’t feel guilty.
Hey Annie,
Congratulations to Max for following in Hannah’s path. They are both great kids.
I wish that I could say or do something to lighten your load. My good thoughts to you and Gerry. Do Ireland. Celebrate life together and flip the bird to anything you haven’t the strength to do. We’re here for you.
A trip sounds like the best thing to do right now. Have fun!!
Vacations, no matter where or for how long, are the things memories are made of. And Ireland is so warm and welcoming to everyone she meets.
Spend an evening out at night in the country side – you can almost see the milky way! I always bring 2 things back – lots of yarn and Middleton very rare (Irish whiskey). Have fun.
PS – Castles are usually manned by grad students – Max will have a ball.
Dear Annie,
Here are some tips for your time in Ireland.
Eat dinner at lunchtime if you are eating out. Do not eat out at American dinner time. The Irish eat their main meal from 1 p.m. to 2 p.m. Carveries offer good value. I paid 50 euro for an evening meal for one in Malahide. At lunchtime it would have been a fraction of the price.
The best value for groceries would be Aldi or Lidl. They are in most large Irish towns. Sandwiches can be purchased in local corner shops. If you drink coffee, bring your own.
If you are renting a car, the best price is usually through Kemwel in New York. They are a rental broker. If you put the rental on a gold credit card like MasterCard, you can decline the insurance. The card has insurance automatically.
Don’t miss Newgrange. It is north of Dublin. Newgrange is 1000 years older than Stonehenge.
In Dublin, use public transportation. Driving is madness.
Don’t use your American cell phone. You can buy an inexpensive phone there and purchase phone time anywhere…corner shops, gas stations, grocery stores. If you must bring an American phone, be sure to switch cards for Europe. The roaming charges would be huge otherwise.
Say hi to Lisa at TIK for me.
(I am originally from Ireland.)
Bravery is being able to act even though you’re scared out of your gourd. (Edited in case any young ones are reading this.) So, yes, you’re brave in my book.
Enjoy Ireland guilt free. Make memories. They are what makes difficult times bearable.
Warm and healthy thoughts to you and your whole family. (and congrats to Max!)
Hi Annie,
I hope you and your family will enjoy your holiday in Ireland. I have just booked to attend your class in TIK and am looking forward to meeting you and learning from you.
put me in the “go to Ireland” category. I think this is one of the things that the old saying about regretting what you didn’t do vs what you did do during your life is made for. This type opportunity may not come again for years, if ever.
And congrats to Max for getting into the BSP, and Hannah for getting into the leadership program.
Go to Ireland,you all need the vacation. I am thinking good thoughts and prayers for both you and Gerry. It is great news about Max getting into the BSP and Hannah for the leadership program.
GO GO GO!!! And ENJOY!!! Ireland is wonderful!! BUT if you rent a car, check with your credit card and SEE if they will insure it in Ireland, our credit card company would not–VISA. They would not insure in 2 countries, Ireland and Israel. Wild and Crazy Drivers??? I don’t know. We LOVED taking the buses and trains. It was so relaxing to let someone else do the driving, we drove in England and it about drove us CRAZY!!! Go and have fun and make wonderful memories. Roz
Go,Annie, Go!….to Ireland. the memories will be worth it. I read in the AARP newsletter (not the magazine) that Curcumin may be of some help with MM. The article was about alternative therapies. Mary in Cincinnati
Thanks for sharing, Annie. Hugs to you all and have a wonderful trip to Ireland.
Julie
Yes, go to Ireland. I am so glad that my husband (then brand new) and I did the choir tour to Southern Scotland and Northern England. As we face his job loss (2 months now) and my kidney failure, every moment is precious.
Go and make memories, this what you need to do and don’t listen to the naysayers. They are just jealous.
Take care of you and your family. That is what you need to do.
Cora
In my humble and unsolicited opinion, going to Ireland is as vital as any medication. Go. Enjoy each other. Laugh. Be together. You all deserve it and you all are so worth it. Leave the naysayers, even the ones in your head, in your dust.
Wishing you wonderful memories.
Annie, I’ve lived with fibro and lupus for 18 years. I’m a disabled doc, and the first thing I learned was to pace myself and enjoy today. I’ve been knitting my way through it and discussing it for a few years. Please come visit my blog.
Happy travels.
Essie