Thursday, December 25, 2008

Downhill all the way

I am sorry to have neglected the blog. It’s been a terrible week. I felt really sick all weekend, and when I called Dr. Alyea Sunday, he said to go to the Brigham and Women’ emergency room in Boston, from where I would get admitted. He also said he was sorry to tell me on the phone, but the pathology report on the bone marrow biopsy report showed that I had relapsed. I had to get to the hospital in a snowstorm, so I didn’t have time to digest it. I still haven’t digested it.

As I said, I felt sick for most of the weekend, but by Saturday evening I felt a little better. I walked the dog and even made cookies. When I was putting the first batch in the oven, I felt like I was going to faint, and slipped down onto the floor. Joe was out; Katie was uptairs. I wasn’t sure I could make it to the bottom of the stairs, but I did, and she came down and finished making the cookies. Then we ate them and watched “Fred Claus.” I only mention these things because of he incongruity: cookies and “Fred Claus” one night; relapse and hospital the next.

The bag that I had packed on Thursday remained unpacked, so I grabbed it and left uncharacteristically quickly. Joe drove to Diane’s in my new Forester (free ad here: thank you Subaru for such a good car), and then Diane and I went to the hospital.

I’m not sure what the plan is for me. First order of business is finding out why I have a fever (or not finding out and hoping it will just go away.) I am on a ton of antiobiotics and on an antifungal because there is something on my lung, which could be either bacterial or fungal.

I can’t write too much more now because I am lucky enough to just find the keys. It looks like I will get another “mini” transplant, though I couldn’t get any serious chemotherapy because there is so little in my marrow and it wouldn’t recover. I have been in such a fog that I can't remember what Dr. Alyea really said and what I dreamt he said. Hopefully I will be more lucid the next time we speak.

So, three weeks ago I was soaring on high counts. Now this. The mind gets stuck on it, uselessly. You could do it for anything. One minute the car was going slowly. The next minute it is acceleratorating and runs a child over. One minute the marketplace is full of lively people. The next minute it is devastated, blown up by a suicide bomber.

I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren. I guess this is my mind’s way of going through the mourning process; I hope to get to the acceptance phase soon.

I wandered over to 6A (my home for the last transplant) from 6C (where I am now). Myra, a wise, funny nurse, who's been doing transplants for ages, knew what had happened. “Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

25 comments:

Samantha MacRae said...

Oh Ronnie. I am so sorry. This is really unfair! I don't know what else to say that we are thinking of you and sending good wishes your way....

Sam xx

CLL Spouse said...

Thank you, Ronni.
(And Myra.)

I am so sorry.
God bless you as you process.
You've been on my thoughts for several days. And now, your grandchildren are added to my prayers.

Mikha'el said...

Know that you are not alone and are sending prayers your way

Rooster said...

Ronnie,

You are traveling the tough road right now, keep up the fight it's not over. I think of you often.

Take Care,
Sandi

donna said...

I know you are tired and that this whole thing is beyond unfair. But you ARE a fighter and you will get by this, too. In writing the blog, you have helped many people through their own dark days. Everyone is pulling for you. Your counts were so good just a couple of weeks ago. You have good doctors and they know what you can do. You are strong, positive, and amazing. Keep believing, Ron.

Jim said...

Ronni,

I am so sorry about this. It hurts to read your post, so I can't imagine how hard it was to write and process.

Your tremendous spirit, full of honesty, character and love, will carry you through. You already know this ... but you have many people who will be by your side in the coming months and years through comforting prayer, bolstering you along the way.

hockeychic said...

I have been lurking here reading your blog for awhile. I am so sorry for this latest news. I am sending you strength and healing thoughts.

Susan C said...

Hello Ronni,
I can't even imagine how hard this news is to process. I needed a little time to sob and then get my profanity out before I could even comment.

I want so badly for this latest twist to be a mistake or just a bad dream. I'm so sorry that it's not. Your wise nurse Myra is right.

Susan

Howard said...

Hi Ronni,

Very hard news to take and of course, just not fair. It's got to be hard to center and prepare for what you have to do but I know you will. Everyone around you will build a safety net as you walk this one more time.

Please keep all of your friends and readers posted as best you can. Lots of eyes watching and hearts insisting you get some good breaks starting now.

PJ said...

Adding my support to all the comments here. I wish I could do more than sit on the sidelines watching as you deal with this. Even though I can literally picture where you are (you could be in my old room), I can't imagine what you're feeling. It's all too much, and just wrong.

I'm with Myra. In a few days, you'll have more information, a treatment plan and new resolve.

Rest up now. We'll talk soon.

Margie said...

Here's a different perspective: One minute the car is going slowly. The next minute it rounds a bend and the view is beautiful. One minute the marketplace is full of lively people. The next minute they pull out their wallets and buy presents for their friends. Or maybe they even burst into song.

This minute your news is harsh and frightening. But, whether the next minute or some minutes after that, I know you will be strong and fighting and well again. And in this minute and all others, you are so so loved.

Patty said...

Ronni - Breathe. You are here and you will carry on. I believe in you and your tenacity.

Sheila said...

I told Katie to pass this on to you, but Iris and I want you to know that you're in our thoughts and prayers. If there's anything we can do, let us know!

susiegb said...

Oh Ronni ... I just came in from taking the dog (my mother's) for a walk with my brother-in-law, nephew etc, and wanted to check in on how you were. This so sucks!

But - there will be a way forward. There will be some treatment you can have that will give you many more years - to enjoy your children and grandchildren.

You just have to be strong and really go for that! Concentrate on the good things - be the 'glass half-full' person! We're all here to help you in whatever way we can - even if it's only sending good thoughts and wishes from afar. Mind you- if there's anything you want that comes from Australia - vegemite?, Tim-Tams? (these are Australian food items I used to crave when I lived in London!) - I'd be very happy to send you some over ... (big grin!)

:) xxx

Diane said...

One day at a time
Remember to breathe
Visualize the swing of the racket hitting with all its force the tennis ball which will smash the leukemia cells
imagine the wind on your face as you are running a race

I LOVE YOU

Anonymous said...

Ronnie,


You are very loved, respected and cared for. You continue to inspire. Please know there are many people out here who would do anything in the world to help out.
Sending healing thoughts,
Lea

Nelle said...

Ronni,
I had checked each and every day for a post from you. I had a bad feeling in the pit of my stomach that you were feeling sicker or something was wrong. While I know this is devastating news at first, I know that you must pick up the pieces and regroup for the next battle. You are a woman of courage and strength and I know you can do this. I feel so badly that you must go through this again. Please know my thoughts and prayers will be with you. I hope you can manage to let us know what is going on. While hundreds of miles away, my thoughts and healing wishes are there with you.
Nelle

Joe said...

Remember.. you didn't go to Canada, you'll find your way back to Vermont.

Love you!

Susan S said...

Ronni,
Thinking of you so much. I'm glad you are under the best care.

Margaret said...

Ronni,

Love you. Keep it simple. Fight, fight, fight.

Margaret

Tami said...

Ronni,
I know you have it in you - dig deep - it is hard and it sucks but you are tough - tougher than you ever thought!!

See you Monday.
T.

Wendy S. Harpham, MD said...

Dear Ronnie,

In addition to my wishes that your physicians guide you to wise decisions, I wish for you:

fortitude, patience, improved appetite, freedom to cry, courage to hope, and the ability to feel your family's and friends' love for you.

With hope, Wendy

chip and carolyn said...

we heard the news from barry s. and have been thinking of you all the time....sometimes downhill all the way can be a downhill on the way to a bend you can't see beyond just yet...you have so many people rooting for you and who love and respect you..strength to strength and much love, carolyn and chip

Korby said...

Ronni,
I am so sad and cannot believe that you are back in the fight. I was so sure you'd be playing tennis this spring! We all miss you so much! Get well soon.
All my love, Korby

Marji said...

Hi Ronni--

I just sent an e-mail thinking I was posting here--so much for technological know-how. I, too, knew something was wrong when you didn't reply to my book club e-mail within your usual 24-hour period. I just can't believe that you have been asked to fight another battle in this war, but you have done this with such grace and fortitude so many times in the past ... (I think Myra aptly referred to your fighting gloves) These are the psychological tools you need to call on once again. And as I said in my e-mail, think positively if it helps, but use your energy in whatever way does you good. Tears and anger are OK, too. With love and support, Marji