June 10, 2017. Today I came across this... haven't read it for years. I can't read it without crying, even now. I love you, Annie.
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Annie
May 25, 2011
Nothing like finding out the crushing news that your baby girl, who happens to only be 30 years old, may have cancer. That jaw schnugger she’s talked about was supposed to be a side effect of TMJ. Now I don’t know if she’s had this problem for a year, or for years. She has pain, and it’s supposed to be from TMJ. But it isn’t after all.
A couple of weekends ago Annie commented on the jaw pain while we were all together. We told her she’d better get it checked, since she’d been putting it off. The mass was much bigger than I thought, and it was starting to be visible in her jaw line. A few days later she said she had made an appointment to see someone about it, then over the weekend said a CT scan was schedule for May 23. Good!
As usual, I didn’t remember that her appointment was on the early side on Monday morning, but was reminded when Annie sent a text saying the CT went fine, but it was a little weird. I was relieved she’d had it done, and confident it would be clear. How could it be—there was a noticeable mass in her jaw area—but again, just something related to TMJ and some exercises and relaxation would fix it.
Late Monday afternoon, it felt like the sky was falling. Annie called to say the PA (I think) had called her with the news about the size of the mass and that it could be benign or it could be chondorsarcoma. Too late to get busy scheduling a Mayo Clinic appointment, but the PA would get going on that in the morning. In the meantime, my mind bounced around, wondering what Annie said for sure, not hearing much emotion in her voice, and just not getting it. My stomach began to tighten and then the feeling I’ve gotten too many times before—Larry’s heart attack, angioplasties, by-pass surgery; my mom’s cancer ordeal and death; my dad’s death; various out-of-the-blue illness incidents with the kids; and yes, even on the joyous occasions of the births of Hannah, Miles, Ethan, Owen, Vivian, and Weston.
It had been too quiet lately. I’d been an inch away from wallowing in my own mixed emotions about being done, DONE, as a teacher and as a teacher educator, but mostly very happy about it. It’s as if complacence was inching its way into my thinking, and then this wrenching news from Annie knocked it away. Reading the radiologist’s report, especially the words “suspicious for chondrosarcoma” (I can barely stand to type the phrase), made the numbness set in.
Since all of this stirred up, Larry and I have talked to Elisabeth, she and Evan have begun checking with physician friends of theirs in Chapel Hill, Larry and I have read things that make us worry and/or give us hope on the Internet, Elisabeth sent an article about mandible surgery that includes immediate reconstructive titanium parts to rebuild the jaw, and Annie has started a blog called “Kick it in the Ass” to share her feelings about this monumental change in her life.
She has an appointment with an oral maxillofacial surgeon on Friday morning at the May Clinic in Rochester, and we’ll know more. If this IS chondrosarcoma of the jaw, there have only been 17 reported cases of it. Ever. It’s very rare. This gives Larry and me hope that it’s not cancer, but rather a nonmalignant mass. Still, it means serious and invasive surgery. But it also would mean no cancer. I have great hope.
In and among all of this, Angie has been struggling with worry about her grandpa, who has been on a ventilator at Abbott this week. She was frightened about going to see him. Here’s what she said in an email—“I just want to keep the image of him as I always think of him - the quiet, strong guy who just had to give you a hug to tell you exactly what he was thinking. The same guy who squeezed my hand when I walked down the aisle to get married.” The good news is that he seems to be getting better, spending less time on the ventilator.
Charlie and Angie have things going on with work that are stressful, too, so it’s a lot to deal with. Elisabeth, bless her, with all of her knowledge, experience, and insight into talking with patients who have serious news about their health to face, is still a loving sister first, and her emotions are deep and pained about Annie. What a wonderful family we have. I hate it when sadness and fear are so close to the surface for everyone.
6:00 pm I wonder what would have been occupying my emotions and my thinking over the last couple of days if Annie hadn’t gotten this frightening news? More self-absorption, probably. All I can think about is Annie, and that her little boys need a healthy mommy, and that Tanner deserves a healthy wife.
9:35 pm It’s a relief to know Charlie and Annie have talked. It’s painful for all of us to worry about Annie, but Charlie likes to retreat when these situations arise. I don’t blame him, I’d like to do it myself. My first instinct is to cover my head and hide. I remember so well when Larry had his heart attack and I had all the same numbness I’ve been having the last couple of days with Annie’s news. It turned out that everyone who called or came to see Larry needed me to be the consoler rather than the one consoled. No one could believe this had happened to Larry and somehow I had to tell them it would be all right. I had no idea if it would be all right or not, but I had to say it would be. What I really wanted to do was to scream “SHUT UP! GO AWAY!” and crawl under the covers. We can’t put Tanner in that position, to be the consoler.
5/26 1:30 p.m.
Annie stayed home from work this morning to grocery shop and do some things around the house. She said yesterday it gives her comfort to do things at home. I get that. I’m sick to my stomach again. I do all right for a while, and I am optimistic about what can be done no matter what the schnugger turns out to be, but the sick feeling lingers.
This morning – and it’s a beautiful day! – I cleaned out the fern/hosta garden. The ferns had overtaken some of the hosta area, and although the fringy green of the ferns is beautiful from a distance, it was obvious when I started working in the garden that even the biggest of the almost-hidden hostas were anxious to breathe their own air again. I filled a garbage can with ferns and weeds, hoed around everything, and then put down dark brown mulch that Larry brought home from a trip to Mkto. It’s satisfying to get it done, although it isn’t “done” yet. Weeds will pop through the mulch in a few days, so I’ll have to get back at it, and I need to put in some color, either impatiens or caladium, probably.
I wish I could say I lose myself in gardening, that the soil and dirty hands and feet make me feel closer to nature. Not true. I don’t like it all that much. I like gardens and flowers and green stuff, but I’d rather have someone else do it. I think I should blog about this. Anyway, the reason I’m writing it is that, besides needing to get going on the weedy flower beds, I thought I’d be distracted from thinking about Annie. I haven’t been distracted for more than a minute. I think about her all the time, and worry, and want it to be me going through this, not Annie. Flowers and dirt and mulch don’t help the situation.
5:04 p.m. I’m thinking that I should put together a preliminary note that I can copy and paste in emails to various people that we’ll want to tell about Annie’s surgery. The only person I’ve talked to so far is Mary O. I knew I had to tell or because she’d see it all over my face when we went out to lunch the other day.
We’ve had a tough week at our house. Annie is going to have surgery soon to have a mass removed from the area around her right jaw. She’s had what has been thought to be TMJ for quite some time, and it’s gotten worse, with the knot of what she thought was something related to TMJ growing larger. A few weeks ago she mentioned that it has been growing, so we put some pressure on her to see a doctor, which she did, and had a CT scan as well. The radiologist suggested the mass could be a chondrosarcoma, cartilage or bone cancer, and she was referred to an oral maxillofacial surgeon at the Mayo Clinic. Thanks to Elisabeth and Evan, she and Tanner went armed with a list of questions.
Okay, that’s where I am right now, in about a 10th revision. I have to wait until after tomorrow’s Clinic visit to know what else I’m going to write. It’s like a “choose your own adventure” story that kids like to read. I can imagine several paths this story can take, and I want it to have the best ending.
6:37 p.m. Just can’t stop thinking about Annie, and feeling sick to my stomach. I love my baby girl. I feel a visceral need to protect Annie and I don’t know how to do it. The last several months I’ve been pretty much disinterested in everything other than the little kids in our family and the big kids who are their parents. Being done with my career, such as it was, I sometimes get a sense that I don’t have a direction in my life. Being (gulp) 62 adds to the feeling of kind of hanging there, with nowhere to go. Once I got over the disbelief and numbness of hearing from Annie about the radiologist report, I had the overwhelming need to be 10 or 15 years younger, stronger, healthier, and ready to do battle for my child, and suddenly I felt guilty for that stupid self-pity I’d been inching toward.
5/27/11 11:11 a.m. It’s been a long morning of waiting. Annie sent a text on the way to Rochester, and earlier a sweet picture of “happy boy” Westy.
Here’s her text message:
“Wild start to the day... Westy up from 3-4am. Peed thru. Mj up before 6am for good. Peed thru and SUPER emotional. Uffdah! We love you. Just entering Roch.”
Annie called back. I have a long list of notes, which I’ll write here to be sure I don’t forget the context.
Annie and Tanner met with the two oral maxillofacial surgeons, Dr. James Van Ess and Dr. Kevin Arce, who will do the surgery. There are no answers yet as to what it is. It’s in the joint area cavity and shows up to the midline. The mass doesn’t appear to be attached. They can’t identify a source. Sort of “there”. It is egg-shaped and takes on the shape of what it is next to. Annie was told that all of these characteristics are of a benign tumor. However, there are calcium deposits, so it is slightly suspicious for osteosarcoma or chondrosarcoma.
Options include having a biopsy, which would probably be done as an outpatient and take a day, but the results of the biopsy may be unclear. So they are choosing to go for the surgery, which will take place in the next 2-3 weeks. That way, when the specimen is removed, it can go through pathology and a clear determination made.
If it is malignant, surgery will stop so that the tumor can be studied and the best course of treatment/surgery/follow-up can be determined.
The best possible situation is that the tumor/mass can be removed with minimal damage to the surrounding bone and tissue, and whatever reconstruction has to be done can be done at that time.
The next step is to consult a cranial surgeon. Dr. Arce will speak with him on Tuesday in person. He’s out of the surgery schedule until August, but they will see if he will participate in this surgery sooner.
Annie asked me to send emails to Alice, Natalie, and Annette, which I did. Also to Angie, asking her to pass along to Charlie. He’s got a phone interview right NOW as a matter of fact (12:30) and Angie says he has stinky toots, so she was going to let him know what’s going on when he’s done (rather than risk diarrhea, I suppose!).
Here’s my latest version of what I want to send out to a few people.
The last week or so has been a bit rough at our house. Annie is going to have surgery soon to have a mass removed from the area around her right jaw. She’s had what has been thought to be TMJ for quite some time, and it’s gotten worse, with the “knot” of what she thought was something related to TMJ growing larger. A few weeks ago she mentioned that it has been growing, so we put some pressure on her to see a doctor, which she did, and she had a CT scan as well. The radiologist suggested the mass could be a chondrosarcoma, --bone or cartilage cancer--, and also noted that there did not appear to be any bone or tissue affected in the area, which seems to indicated that it is contained. Annie was immediately referred to the Mayo Clinic. Thanks to Elisabeth and Evan, Annie and Tanner went armed with a list of questions.
During that first visit, they met with the two maxillofacial surgeons who will perform the surgery. They went for a second visit today (Monday) to also meet with an ENT (Ear, Nose, Throat) surgeon who will also be on the tem. So far, there are no answers as to exactly what the mass is, but she knows more about possibilities and what might happen. Until surgery is performed, they won't know if it is malignant or benign because even a biopsy might not produce clear results-- they'll need to remove and examine a larger specimen to be certain. Surgery is scheduled -------------------- What happens then depends on the pathology result.
That’s what we know for now. It’s scary as hell not to know if the mass is benign or malignant, if it can be removed completely, what kind of nerve or jaw damage might occur, etc, but Annie is strong, positive, and determined to have the best possible outcome. When there is more to report, I’ll let you know.
Who to send to: Don & Janet, Mary Jo, Mike & Margot, Mark and Kathy, Teresa, Cindy, Deb, LaVonne, Kris, Jane, Tudy
5/28/11 7:00 p.m. The last 24 hours have been much better for everyone. Annie has seemed to go on with a more normal routine. We had dinner (Jimmy John’s, which MJG loves!) with them last night, and it felt good to listen to Miles jabber and to watch Westy clap and pound the highchair tray with his little hands, while entertaining us all. He knew he was the center of attention, and he made his mommy and daddy laugh, which was great. Miles and Tanner played a little game of “Don’t laugh, Miles, “ which involved Miles trying to keep a straight face while Tanner gradually moved wiggly fingers toward Miles’ chin and then tickled him. A good evening.
I wish I could say my stomach has stopped feeling queasy, but it hasn’t. I forget for a few minutes or an hour, and then it all comes back. Dang it!
5/30/11 Charlie, Angie, Ethan, Owen, Annie, Tanner, Miles, and Westy were here from Sunday morning until later afternoon. Annie’s family stayed with Dave and Doreen, so Annie and Tanner had a chance to talk with D & D about all that is going on. Annie was busy, mostly happy, and it felt great to have them all here, and to skype with E, E, H, and v. Annie was distracted at times, but why shouldn’t she be. Good to talk with Angie about this, too. She’s so caring about Annie.
I’m postponing telling others about Annie’s illness. Thought I’d do it today via email, but it just doesn’t seem right. Annie needs a break, and I worry that people would start sending her notes and asking questions she doesn’t have answers for yet. I have to think about it some more.
May 31, 2011 7:02 p.m.
One of those days. Annie called to say she requested her records from 2003 from Marlow in Mkto, from when she had her wisdom teeth removed. Is that right? 2003? I think that’s when she said it was. Big surprise that there was some resistance on the part of the person she talked to, but I’m cleared to pick them up on Thursday morning on my way to Owatonna.
Larry is bothered that he found out about Angie’s job from Bill Barnick. I know, not a good thing. I hope Charlie will be in touch with Larry about whatever comes next for the GAC position. And tonight at dinner, Larry got some food, presumably chicken, caught in his esophagus and it’s still not certain whether it’s stuck yet or not. He went out for a walk to try and clear it, but says he thinks it’s still caught. This will probably mean a trip to the ER to have it scoped tonight. I hope not for his sake. Yup. A trip to the ER. He’s okay now.
June 3, 2011 7:30 pm Annie and Miles are in NC with Hannah, Viv, and E & E. Good change of scenery for Annie. Monday is the appointment at the Clinic that should set a timeline for surgery and recovery. I can’t write anything about this right now. My stomach starts to churn when I think about it and it gets completely out of control when I write anything. Taking Miles and Annie to the airport yesterday felt so very good. Lots of conversation with the little blonde boy, and a word or two in edgewise with Annie. Well, more than that, but it wasn’t easy! So cute.
I know the cousins are all having a great time with each other. The other two cousins are busy being cute as well, but in Richfield. Charlie was here today after Part I of the interview schedule. Good to see him, and I’m trying to suppress my enthusiasm for them moving to St. Peter, just in case he doesn’t get the job. It would be great if he does— and we’ll know a lot more in two weeks.
I feel at a loss for expressing myself about Annie, about other family issues, about anything. I wish I were a writer, that the words would come from inside my head or from some undetermined magical place and appear on paper to say what I want to say. Isn’t happening.
June 6, 2011 Almost noon. Annie and Tanner are in Rochester. Appointment with ENT doc was at 10:45, so they may be done, may be on to some tests, at lunch, on their way home… I don’t know. Please let there be good news from this visit.
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Newest version of email to friends: Annie is going to have surgery soon to have a mass removed from the area around her right jaw. She has TMJ (yes, she's a “clencher”) and has had a lump in her jaw area for quite some time that seemed to be related to the TMJ, but it turns out it's not. A few weeks ago she mentioned that it had been getting larger, so we put some pressure on her to see a doctor, which she did, and she had a CT scan as well. The radiologist's report suggested the mass could be a chondrosarcoma, --cartilage cancer--, and also noted that there did not appear to be any bone or tissue affected in the area, which seems to indicate that it is contained. Annie was immediately referred to the Mayo Clinic. Thanks to Elisabeth and Evan, Annie and Tanner went armed with a list of questions.
During the first Mayo visit, they met with the two maxillofacial surgeons, one of whom will be involved in the surgery. They went for a second visit on Monday to meet with an ENT (Ear, Nose, Throat) surgeon who will also be on the team, and who expressed optimism based on the CT scan and his experience that the mass is not spreading into bone or other tissue. So far, there are no answers as to exactly what it is, but she knows more about possibilities and what might happen. Until surgery is performed, they won't know if it is malignant or benign because even a biopsy might not produce clear results -- they'll need to remove and examine a larger specimen to be certain. What happens after that depends on the pathology result. Surgery is scheduled for June 15.
It's frightening not to know if the mass is benign or malignant (but signs are good that it is benign), if it can be removed completely, what kind of nerve or jaw damage might occur, etc, but Annie is strong, positive, and determined to have the best possible outcome. That’s what we know for now. Elisabeth is going to be here for the surgery, and that is a great comfort to Annie and Tanner. Annie and Miles went to NC last weekend for Hannah's 4th birthday, which they'd planned to do long before all this came up, and of course that was a good distraction for a few days.
(REVISED several times; most recently on 6/9)
Who to send to: Don & Janet, Mary Jo, Mike & Margot, Mark and Kathy, Teresa, Cindy, Deb, LaVonne, Kris, Jane, Tudy, Marge J., Sandy Brew, Margie Nelsen
Kathy, Karla, Jamie, Matt, Mike, Amber, Dan?
6:34 pm
I sent out messages to the people above and feel better having them know what is going on. I’m sure I should send to others, but can’t right now. Mark passed along the info to Kathy, Karla, and Jamie. Jamie is being deployed soon—god, how could a parent deal with that?
June 14, 2011
Damn long day today. I stayed in bed until 8:15, read the paper and drank coffee, and by 11:00 I thought it was at least 1:00. I could start something like cleaning out a closet or straightening up the basement, or doing some work outside (rain is preventing that now), but I just don’t have the urge. I baked choc chip cookie brownies to take to Richfield tonight to share with Angie and Charlie, and will take one to Elisabeth when we pick her up at the airport. Will be so fun to see Vivian. I feel like I need to get to know that little chiquita better. Right now it’s especially hard to have Elisabeth and Evan so far away.
9:45 pm
What I wish right now is that I could do what Annie did when we went on a trip to Disney World when she was a small child: write a journal entry for her blog that says everything went well with surgery and that we had breakfast with Minnie and Mickey. We hadn’t even gotten through Iowa when she wrote a “future entry” in her journal because she knew she’d be too busy to write when we actually arrived in Florida. Oh for those innocent days when Annie made up what would happen on our trip and her biggest problem she had was wearing a buzzer in her undies to wake her out of sleep so she wouldn’t wet the bed!
July 16, 2011
I opened this file last night, having stopped writing on it for some a while back. I think I just got too busy thinking and didn’t take time to write. I’ve tried to re-read it, but it’s too emotional for me, so I need to wait a while.
January 30, 2012
I finally read through what I wrote beginning 8 months ago. My stomach is flipping just reading it, even though the outcome was eventually a very good one. I just could not write about Annie’s second surgery. My fingers couldn’t type the words. Annie is doing great now, she’s happy and healthy, and she has the energy to keep up with (and surpass!) sweet Miles and little Westy.
