heather + finn !

Cancer came to teach us and it’s amazing to have to admit that there are lessons I still have yet to learn fully. Just when I think I’ve got a grip on things, I get handed another dose of “not so fast, Miss Thing”.

I have been recovering well, mostly. Slowly and surely, with some hiccups along the way. Since coming home I have had a little liver issue—nothing I can detect but my blood work consistently showed a reduction in function for a while. About three weeks ago, I went to bed and had a hard time getting up for about three days. This didn’t strike me as all that unusual at the time—for the last 9 months I have had weekends when I couldn’t get out of bed, those days when my body remembers the assault it has taken and just decides to take some time off. Then the fatigue turned into trouble keeping my breath, and after a trip to Boston and some pulmonary tests, I was told I had developed Pneumonitis—an inflammation of the lungs which occurs in about 50% of transplant patients. It is basically caused by my immune system waking back up to find that there are irritated cells covering my lungs (wouldn’t YOU be irritated after all this abuse?). My new immune system, wanting so much to please, has leapt into action and attacked the irascible cells, unwittingly putting a buffer between my blood and the oxygen trying to get to it, so I felt winded all the time. I have now twice been feeling good, then slammed back in bed with this complication, and I will tell you that each time it chips away at my confidence a little. there’s more →

Rollercoaster

Off to Boston today for another check up. Lots of ups and downs here, I have been trying to sort it out before I report, but please stay tuned for an update hopefully this weekend. Lots of pictures to share too, hoping you all are well and still with us. Stay tuned.

With Love,
Heather

I’m back.

I’m home.

I’ve resurfaced from some pretty murky depths.

We were back in Bath by 9:30 am Saturday morning. It feels wonderful to be home, in our own space. And it’s so clean here! One of the conditions of the release of a bone marrow transplant patient is that the home be cleaned—really cleaned—from top to bottom. A super -duper-never-been-cleaned-like-this-behind-the-stove-and-don’t-forget-the-chandeliers-and-the-rugs kind of clean. Thanks to Al for sponsoring the clean and Wendy for arranging the clean, we returned home to a magnificently clean space, adding to the pleasure of just being here.

In spite of being here, it has still taken me a few days to emerge from this shell I have been huddled in for the last few weeks. I never intended to withdraw, and the fact that I did so would have been hard for even me to believe if you had told me a year ago that I would silence myself like that for weeks on end. But I just followed my instinct, my heart, my energy, my spirit, and all of these asked that I go quiet. Honestly, in some ways, I think I just needed every drop of energy for survival. I know there were more than a few moments where I felt that to be true with every fiber of me. there’s more →

Hi Everybody,
We are out of the hospital!! Tuesday, the docs decided that our Heather was up to leaving the hospital. Her blood counts continue to be strong and overall her health is good. We spent two nights in a dippy apartment next to the hospital, and when I could not take it anymore, Kim, Mom Weaf and Grammie Neal cleaned and scrubbed a couple of rooms for us to move her into in Reading where we had a long awaited and teary family reunion. Finny, much to Heather’s relief, was full of smiles and cuddles when he saw her for the first time in three weeks. He could not keep his eyes off her all day. He woke this morning full of giggles and happy noises and, after his morning bottle, is now asleep in bed with Heather. there’s more →

HI All,

The news is great! Saturday night Heather did indeed act like “toast popping out of the toaster”. Her ANC (Absolute Nutrafil? Count), a blood test that has to be above 500, went from 70 to 430! It gets better. Last night Heather was having a hard time sleeping and the nurse came to her room and told her that her count had shot up to 2520. That is just about normal! I got a phone call at 3AM with the news. Our girl is going to be out of the hospital in under three weeks. Assuming no hitches, she is getting discharged tomorrow!!!!!!! Amazing. We have to spend a couple of days at a local, very clean apartment before she can come home, but I bet we will be sleeping in our own bed by this weekend. She made it through this whole thing about as fast as anyone ever does. Today she gets to go for a walk in the hallway and is terribly excited to be set free. We are all terribly excited. Love to you all.

Dick

Hello Everyone,
Finn and I came home for a night to attend Heather and Frank’s book launch at Abracadabra in Brunswick. It was nourishing to see you all. Here is a letter that Heather emailed me just before the party to read to everyone if the occasion arose. Well, the occasion never arose for some reason, but I thought everyone would like to read it. I know many were disappointed because they sold out of books at the show, but more can be bought at Abracadabra later in the week and they can be ordered from Amazon also. The title is, Confluence: Merrymeeting Bay Author Frank Burroughs/Photography by Heather Perry. Published by Tilbury House.

Also people have been asking for heather’s address:
Heather Weafer, Feldberg 787, Beth Isreal Deaconess Medical Center, 330 Brookline Ave., Boston, MA 02215

August 4, 2006 (Letter from Heather)

Dear Friends and Family:
I’m sitting in my plush, custom-built window seat at BIDMC. At this height I can see many of Boston’s interesting old rooftops as well as the rounded green lids of her many collegiate treed parks. I have been watching a large bird of prey‹I think it is a city dwelling Red-tailed hawk‹for two days now. I’m wondering if it is the same one we watched come and go from above Finny’s NICU widow last January. He’s a handsome beast and when I watch him in the blue above the city, I am reminded of home and the birds of Merrymeeting Bay. there’s more →

I just read all of the latest postings to Heather and you all had us in tears again. Tears of joy and gratitude and amazement at how many wonderful people there are in our lives. I am happy to report that Heather seems to be doing very well. Her blood counts are still low, but they are getting bigger instead of smaller. Her mouth sores are less painful today and her bowels are tamer too. She has struggled with her gut the past few days, and the docs have her on IV food to keep irritation down. Dr. Joyce thinks that the leftover effects of radiation combined with the chemo have made her bowels more irritable than usual. She also predicts that by Saturday Heather will be “like toast popping out of a toaster.” Right now she is sitting comfortably in bed watching trashy soaps. She is almost perky today. She has convinced the head nurse to let Dad Weaf build her a window seat so she can have another place to hang out besides her bed. My job is to search for the perfect cushion for it…She just can’twait to hang out in her new window seat! That is an attitude adjustment for sure. Heather says she misses you all and gives a big hello to everyone. She also says “Stay cool, I hear it is hot out in the real world.”

Love, D and H

It is Sunday evening and we are still on this rollercoaster from hell…or is it heaven?? Physically, all is going as expected with the transplant. Heather got her cells back Friday and is slogging through the weekend as her blood counts plummet and the side effects of the chemo really set in. She has sores from her mouth to her stomach which make eating unpleasant. On top of that, what goes down is not always happy to stay down. She swears she will never eat another ppj for the rest of her life after the pain and nausea caused by the last. Her blood counts will continue to drop for the next couple of days and what little hair she has will likely be gone by the end of the week. On Tuesday or Wednesday, the docs will start giving her drugs to encourage blood cell development and hopefully her body gets the hint and starts to recover. there’s more →

Hello again,

I am finding myself with lots of time here while Heather sleeps, and wanted all of you who keep checking in to know how important your messages are to us. It is amazing how somewone always says just the right thing just when we need to hear it. The first few days of treatment were really, really tough for Heather. I think she was more down
submitting to this than ever before. Getting the chemo is not supposed to be the worst part of treatment, but it took its toll on Heather emotionally. The dam broke yesterday and there were rivers of tears. Tears for missing Finn, tears of anger, tears of fear, tears of frustration, tears of despair and tears for the sake of tears. The good news is that the chemo is over forever, her swelling from all of the fluid has gone down considerably and she was smiling when I came in today. The room was decorated with pictures of Finn and one of her favorite nurses is in charge. What has happened reminds me of what happens when you shake a can of soda too much. When you open it up, it comes gushing out. It was hard few days, but she seems ready to heal now. there’s more →

Hi everyone.

Heather has started her bone marrow transplant. We left home on Tuesday for a meeting with the docs and a few last minute tests at the hospital, and spent a few nights with Kim and Tiff and the babies in Reading. Mom and Dad Weaf were here to help out too. After a few nice days with the family we headed to the hospital on Friday afternoon o check in. Hopefully saying goodbye to Finn will be the hardest part of this ordeal for heather. She spent some quiet time with him alone on the bed upstairs. She did not really start crying until whe brought him down the stairs and saw the rest of us with tears in our eyes. Needless to say it was a painful goodbye for her. The little squish new something was going on. He nuzzled into his Mommy and hung on to her pretty tight when it was time to part. My sister and grandmother were there to take him from her with promises that he would be well cared for. It was one of our harder moments. Hopefully the hardest of this entire ordeal. there’s more →