Wednesday, June 30, 2010

Happy Anniversary Dad and MJ

Today is Dad and MJ's wedding anniversary.

My aunt says that Dad is having some rough moments. He knows this will be his last anniversary with MJ, who has brought him so much happiness in the years that she's been in his life.

MJ tells me that she "loves him to pieces."

They are going out to Bear Lake to spend some time together and are meeting some old friends. MJ is looking forward to it. I hope they have a nice time together and that they can remember the good in their lives today; that they have each other, even if it's for a short while.

I told MJ Happy Anniversary and that I loved her. She replied by asking me to always remember that she loves me too.

As if I could ever forget...

The Cancer Chronicles, Part 7

The cancer has spread even more. It's now also in her brain, her shoulder and her leg. She is losing her vision and needs help walking now. I am horrified at how quickly this is happening. It seems as though an explosion has gone off inside of her. And I suppose one has. An explosion of toxic, deadly cells that are shutting her body down one organ at a time.

Her spirits go from being her cheerful, bubbly self, to being down and despondent. I don't know how to help her, but I'm trying.

Here she is with her granddaughter last week:
*photo of MJ and H:
100_3619


And again, with my dad:

100_3620

Dad seems to have settled into a routine and is accepting the situation. It's hard on him; my dad doesn't do well with normal stresses of life, let alone this huge upending of his routine. But he's getting by. After she passes will be a different story.

My aunt and uncle are visiting them this week, so Dad and MJ are in good hands. MJ has a wish to take a hot air balloon ride with my dad. She has talked about this dream since before they got married. It's scheduled for next week. I hope it goes well and that she enjoys herself.

In the car this morning, Bumblebee asked me when Grandpa and Grandma Mary Jane will be coming back to Iowa. I told her that it would be a while. I was surprised that she didn't know that MJ is dying. I hadn't specifically told her that, but she's been present when we've talked about it so much lately.

I explained that Grandma MJ is very sick, and that she probably won't be coming back to Iowa with Grandpa. I told her that she had cancer and it was spreading in many parts of her body.

"Just like Bob?" she asked. Bob was The Husband's uncle who passed away two years ago.

"Yes. Just like Bob." I told her.

She began to cry. Seeing her cry made a lump form in my throat. I had to take deep breaths to keep it under control.

I guess this is hard on all of us...

Thursday, June 24, 2010

The Cancer Chronicles, Part 6

What is she thinking?

This photo was taken of MJ on the weekend of Memorial Day. Brother Z and his fiancee took Dad and MJ on a train trip. I selected it for this post because she looks so pensive staring out at the scenery.

MJ

I keep wondering what my stepmother is thinking. How do you make yourself accept the news that you're dying?

We text each other several times a day, and talk by phone when she feels like it. A few days ago she told me to have a great day and I joked with her that it probably wouldn't be so great since I had 500+ emails to get through at work.

Dumb. I sent it and immediately wanted a 'recall' button. I knew how she'd react. Sure enough, her reply said that she was sorry, that it was her fault that I had a lot of emails to get through. (Because I was unable to work most of last week while I was out there.)

I tried to explain to her that it wasn't her fault and she replied by telling me that she's feeling very sad. When I asked if she was having second thoughts about her decision to forgo surgery, she said that no, she didn't want the surgery. She was sad because she's dying and it doesn't matter that she doesn't want to.

It doesn't matter that she doesn't want to. She's right. And it sucks.

Yesterday her granddaughter graduated from preschool. MJ said she got lots of hugs and kisses and that they took a lot of pictures. That made my mind wander. I wonder what MJ thought about during that ceremony? There won't be many more of these milestones for her to see. She is so attached to her granddaughters. They are a living link to her daughter who died unexpectedly in January. It's a blessing that her son in law is a wonderful man who understands that MJ needs to be near the girls. He offered to let her live in his home until she passes, but she doesn't want the girls to watch her die.

This is such a selfless thought. She would love nothing more than to be surrounded by those girls all the time. They are her life. But she doesn't want them to be scared and she doesn't want their lives inconvenienced by her illness.

Brother Z is in NY visiting them this week. Yesterday he asked me if I knew that hot dogs used to be called coney dogs and that they were invented in NY. Of course I didn't know that. He also said this: "I also got 'little miss I'm not hungry" to eat two of them today!" It made me smile that he's so concerned for her. He's a good kid, that Brother Z of mine. Well, if you can call a 27 year old a kid. Which I can. Because I'm old.

I did some research and found a book called "As I Journey On: Meditations for Those Facing Death". There are many sections, including these:

  • Remember Me
  • Dark Nights
  • Fear
  • Unresolved Anger
  • Despair
  • Grief
  • Humor
  • Priorities
  • Unfinished Business
  • Letting Go
And many, many more. The book is formatted so that there is a personal story or experience about each of these subjects followed by a brief prayer, questions to ponder, and an action item, which I think is really neat. For example in the first section, "Remember Me" the action item is this: Today I will... pass along a story.

MJ might not like this book. It might not be her thing. And that's OK. Everyone's different. But I'm going to download it on my Kindle and read it. There's a lot of information there that I think is valuable for anyone to learn.

I find that I'm feeling guilty about being home. But grateful and happy to be here as well. I wish I could do more, but I know that my place is here with my family. I think an interesting side effect of all this is the gratitude I have for my own health and vitality. I was trying not to drop dead in my exercise class this morning (funny how those casual terms seem crude when a loved one is dying) and I motivated myself to finish the endless sets of lunges and squats by remembering, and being thankful that I am lucky to be strong and healthy.

Monday, June 21, 2010

The Cancer Chronicles, Part 5

Well, I made it home this weekend. It was a long drive, and last week was one of the most emotionally draining weeks of my life. I felt pulled in many directions and there were so many things I wanted to get done while I was in New York. I accomplished most of what I set out to, and I feel pretty good about what I could do during my week out there.

MJ decided not to have the surgery. I know this was a difficult decision for her, but she seems at peace with it now. She doesn't want to put her body through any more trauma than it's already been through. She doesn't want her last few months to be spent recovering in a hospital bed. She wants to give her body a rest and enjoy the time she has left.

I wonder what I would have done in her situation. I honestly don't know how I would choose, given the options she had. It provided lots of food for thought for me on the drive home on Saturday.

We don't know how long she has. It could be weeks or months. But she and Dad have a nice place to live now, they move into the apartment we found them today. My brothers have agreed to help chip in with the cost of the apartment, and I'm really proud to have a family who will step up and help when needed like this.

Brother Z is flying out to NY today to be with them this week. Safe travels, Z.

Friday, June 18, 2010

The Cancer Chronicles, Part 4

Yesterday I took the kids up to Niagara Falls. We've been there before, but it was a nice getaway with them. We were able to walk around the park at a leisurely pace and do whatever we felt like doing. The kids played around while I sat and people watched.

People watching is one of my favorite activities. There were all sorts of tourists at the falls. Families with boisterous kids, exercise buffs, jogging along the trails, sweet elderly couples going on a slow stroll hand in hand, foreign families snapping pictures excitedly, young couples sharing a romantic day trip. I had a nice time watching everyone. I like to make up stories about the people I see. It's a fun activity, and I enjoyed the diversion yesterday.

But not today. People watching at a cancer hospital is completely different.

I'm sitting outside of the lab at the cancer hospital. A little boy, about five or six years old goes into the lab with his father. I notice them walk in, but like everyone else, they slip from my mind after they are out of view. Until I hear the little boy start to scream as he gets his bloodwork done. Oh that scream is haunting. The workers at the lab close the door. A young family sitting on a sofa near the lab gets up and move to a seat across the atrium, away from the lab. They, too, have a child who is a cancer patient here.

The boy continues to scream. After a few moments, the door of the lab opens, and he comes out, wrapped in his father's arms, still crying. I watch, heartbroken, as the father consoles his son. The screams soften to sobs, which then turn into whimpers as they walk toward the elevators.

This place will forever haunt me.

I see a woman being rolled through the lobby in a wheelchair by her long haired husband. Her t-shirt is bright green and has "WHY ME?" printed on it.

Now I'm in the nuclear medicine waiting room. MJ is back having a bone scan done on her body. Earlier today she had dye injected into her bloodstream. We spent the morning waiting for the dye to travel throughout her body for the procedure. My father sits next to me, his hand propping his head up as he dozes. Every once in a while he sighs deeply, a shaky sigh that tells me he is worried. Moments later he is snoring softly. This is hard on him, but he's holding up better than I had expected.

A young, stylish woman in her mid twenties sits close by next to a middle aged woman. The door opens and they both look up to see who the nurse is going to call back. In that instant, I know they are mother and daughter. Their eyes have the same expression, shape, and color. Only the amount of wrinkles around the older woman's eyes make them different. Several minutes later, a name is called and the young woman stands up and goes back to have done whatever it is they do at a 'nuclear medicine' office. I am surprised; I would have guessed that the mother was the cancer patient. It saddens me that it's the girl.

There are older couples here too... and they are sweet in their devotion to each other. But somehow seeing a cancer patient in their senior years isn't as horrifying as seeing a young person. The young married couple across from me in this waiting room, for example, makes me sad. They look to be about my age, maybe younger. The woman looks tired, she has no makeup on and is wearing sweatpants and a t-shirt. Her husband pulls a ziplock baggie out of his shoulder bag. It contains miniature Hershey bars. He fishes out a dark chocolate and hands it to his wife. She smiles tiredly and thanks him. I wonder what kind of cancer she has and if she has to have a bone scan done today, like my step mother does. As her name is called, she gets up to leave and her husband grasps her hand and squeezes it. "I love you," he mouths. She smiles and heads out of the waiting room. He sighs deeply, gathers his things, and escapes this place.

I will soon be 'escaping' this situation as well. Later today we will call to see when MJ's surgery will start on Monday. I won't be here for it. I am going home tomorrow morning. I'm torn. I want to go home; I need to get back to my life. But I want to continue helping out here too. Luckily, my brother is coming out next week to be with Dad while MJ is in the hospital recovering from the surgery. He is good at calming my father down and providing the support to him that he needs. It's time for me to get back home and continue on with my life. I will be able to do some things from home, I just hope it's enough to make a difference.

Wednesday, June 16, 2010

The Cancer Chronicles, Part 3

I took this photo on Tuesday night as we had a cookout at the hotel:
*photo of Dad and MJ:
Dad and MJ

Today was a long day. We spent it at the hospital. MJ had a lot of tests and blood work and consultations with doctors.

The good news is that there is no cancer in the brain. Surgery is still an option and after talking through the pros and cons of it all, MJ has decided to go for it. She wants a chance, no matter how small, of being around longer to see her granddaughters grow up just a little bit longer, hopefully long enough to have memories of her. She's aware that the chance of surviving even a year are very slim. With surgery, she at least has the chance. Without it, there is no chance.

I know she's agonizing over the choice. And although she's told the doctor to keep her on Monday's schedule, she can always back out of it. I don't think she'll change her mind, but it is nice to know that she has the option.

As if the cancer wasn't enough to worry about, she and Dad are homeless at the moment. They own a home in Iowa, but MJ wanted to be in Buffalo near her kids and grandkids. After the cancer diagnosis, I encouraged them to come out here right away. Dad had been resistant to the idea, for whatever reason, but she needs to be here with her family and the wonderful friends she has out here. So they got into the car and drove out here.

But they were living with friends or her brother until I got here on Sunday. This week they have been living with me in a 2 bedroom suite hotel room. It's been comfortable for them, I think. But it's not 'home'. They need a place to stay where they can relax and call it their own.

MJ has two sons. One lives in a one bedroom apartment. The other son and daughter-in-law own the house that used to be MJ's. They have made it clear that they don't want Dad and MJ living with them. I've heard their reasons, and I understand that it would be a huge disruption to someone's daily routine to bring in aging parents, one of whom is terminally ill. But even though I understand how difficult it would be, I can't imagine turning my parents away in a time of need like this. If MJ hadn't needed so desperately to come home to NY, I would have moved them both into my house in Iowa and done what I could to make her comfortable.

But, the situation is what it is, and so we have been looking for an apartment for them. I think we found a nice one, and we will hopefully finalize the lease tomorrow and move them in this weekend. We want them to have a place they can call home. MJ has a great support group of friends who would let her stay with them. But she needs the comfort and privacy of her own place, without feeling beholden to someone who is letting her sleep in a spare bedroom. She is feeling hurt, rejected, and sad that her son and daughter-in-law won't let her stay with them. She feels uncomfortable at the thought that my brothers and her sons will be pitching in with the cost of the apartment so that they can afford it. It's not an easy situation, but it's necessary. We are arranging to have family members come out here to stay with Dad a week at a time. He needs the support, and the family members will need a place to stay while they are here. This apartment will serve that purpose as well, and it's much cheaper than a hotel rental.

Along with the logistics of securing an apartment rental comes the emotional toll it is taking. My dad told MJ that he resents not being included in the apartment finding process. He didn't mention this to me, and while we weren't including him in narrowing down the selection, we took them over to view the place we selected so that they could say yes or no. I wish Dad would talk to me about feeling left out, instead of burdening MJ with his anger. They got into an argument at the hotel last night. They were arguing about the apartment, and the bitterness of the situation all floated up to the surface. I don't suppose Dad realized that the kids and I could hear everything he was saying. After the full day at the hospital, we were all wound so tightly that we risked snapping, but that argument made me desperately sad. I had to get out of there and get some fresh air to clear my head.

It is stressful for us all, but we have to make this as easy on MJ as we can. So I'm trying to find the balance between helping MJ out and not stepping on my dad's toes in the process. It's not easy.

Last night when I came back after the argument, MJ had gone to sleep. Dad came out and was sad and crying. He wanted comfort from me. I gave him a hug and he sobbed, "What am I going to do?"

In that instant I felt a mixture of anger and pity. Anger that he was still so focused on his own pain and fear. But pity for him, because he doesn't handle emotional situations well, and this is the mother of emotional hell.

I had a long talk with my aunt last night and she made me feel so much better. I'm struggling with this and having a hard time wearing all of the hats I'm feeling responsible to wear this week. She likened the situation to triage after an accident. We need to focus first on the most severely injured patients, and unfortunately those who have less severe injuries will have to be tended to later.

My first priority is to help with the logistics of making MJ comfortable so that she can either fight this disease with all she's got or die with peace and dignity. My dad needs help too, though. I am thankful that my Brother Z is coming out next week. He'll be here for dad when MJ is in the hospital, recovering from surgery. Z is very good at being there for Dad. I'm very good at making things (like the apartment and the doctor's visits and the logistics of it all) happen.

I think things happen the way they do for a reason. I've been able to spend this week out here doing what I do best, and Z will be able to play to his strengths with Dad next week.

We'll get through this. But it sure isn't easy.

(I don't have time to proof read this, so please forgive me if it's unreadable...)

Tuesday, June 15, 2010

The Cancer Chronicles, Part 2

Link to Part 1 here.

Mary Jane asked Nick and me to come to the appointment so that we can learn exactly what is going on. The hot German doctor (Dr. S) had already explained the situation to them last week, but she wanted to make sure she hadn't missed something, and he encouraged her to bring us in so he can explain it to us. I wrote an entire page full of notes. Nick joked about it to me after the appointment. "You took a lot of notes in school, didn't you?" he said. I explained how my memory is awful and I have to write things down or I will either forget them or remember them incorrectly and inadvertently exaggerate or diminish the reality of something.

The cancer started in the kidney. One of her kidneys is completely covered in cancer. The other one is partially covered. The cancer has spread to her spleen, liver, lungs, lymph nodes, and bones. It might be in her brain.

Left untreated, she has anywhere from a month or two to live. And of course, every patient is different. This is just an estimate.

Dr. S is offering surgery as an option at this point, but he was candid and said that he's probably the only doctor in the state of New York who would perform it on her with her cancer as advanced as it is. He said most doctors would stop treatment now and focus on making her comfortable.

And here's why: the surgery is risky, just like all surgeries. But more importantly, it's a long shot. The surgery would remove one kidney and the spleen. Dr. S explained that 1 in 10 patients will live another 5-6 months after surgery in this situation. 1 in 100 might live another year or two.

MJ asked Nick and me if we think she should have the surgery. We protested that only she can make that decision. She brushed our comments aside. She wanted our opinions. She looked at Nick first. I watched them look at each other. Nick was silent for a long time. His eyes filled up with tears. He shook his head no, which meant that he doesn't think she should have the surgery. MJ nodded, crying softly, and turned to look at me.

I don't know why I didn't cry. I cry at country music songs and Folgers commercials, for Pete's sake. But I sat in that penis themed room staring into the eyes of my terminally ill step mom and was dry eyed. I felt so guilty about that. I kept thinking that I should be crying.

But she wanted my answer. All along she has asked for my advice. And she's taken it. And now, she wanted me to weigh in on whether she should have this surgery or not. I didn't want that responsibility. But she wanted me to tell her what I think she should do.

So, like Nick, I slowly shook my head. It was all I could do to continue looking her in the eye. I wanted so badly to stare at the floor, to avoid her haunted gaze.

I don't think she should have the surgery. I can't explain why, but don't think it will make her live longer. I think it will create more pain during the last few weeks of her life. And yet... if I were in her shoes would I want that chance, no matter how small, to live just a little bit longer? I think I would.

There is a wild card in this situation. She has a brain scan tomorrow. If there are any signs of cancer in her brain, they won't do the surgery. The presence of cancer in the brain will obliterate the chances of surgery extending her life.

If I were a betting woman, I'd say that the decision is going to be made for her. But we'll have to wait and see.

Monday, June 14, 2010

The Cancer Chronicles, Part 1

My step mom is dying of cancer. Since I haven't made much use of my blog lately, I decided to write about her journey from my point of view.

MJ doesn't just have cancer. She's dying of it. It's everywhere: her kidneys, liver, lungs, spleen, lymph nodes, bones and possibly her brain.

I'm in Buffalo, NY this week with the kids. We drove out on Sunday. 850 miles. 14 hours. Six states: Iowa. Illinois. Indiana. Ohio. Pennsylvania. New York. Ohio was the longest. That state seems tiny on the map, but it takes forever to drive through.

We're here to help my Dad deal with the reality of this situation. So far I've done a lot of hand holding, waiting in waiting rooms, talking on the phone to my relatives, making lists of things to accomplish in the week that I'm out here, and listening to doctors.

The doctor at Roswell Park Cancer Institute was a handsome young blonde man who spoke with a slight German accent. My step brother (Dad and MJ got married when I was 34 years old, so that term 'step brother' is weird to me) and I sat in an exam room while he told us about the options.

I always thought that doctors who told you bad news did so in their offices. They'd sit behind a gleaming polished mahogany desk, remove their eye glasses, polish them, and then proceed to tell you that you were dying.

That wasn't the case here. Nick, Dad, MJ and I crammed ourselves into a small exam room while the doctor leaned up against the counter to talk to us. His backside kept bumping against the keyboard, causing the monitor on the table behind him to flicker distractingly.

I still don't understand why, but she was being seen in the Urology department at the Cancer center. Maybe because they believe the cancer began in the kidneys and kidney/urology medicine is linked? Who knows. Another distraction in the room was the poster that detailed the anatomy of a penis. I can't help it; when I'm stressed, sad, and trying not to freak out, and there's a poster of a bunch of penises on the wall, I want to giggle. But I couldn't giggle. Not today. So I stared at it instead, and let my eyes glaze over as I stared with out really seeing the drawing of a sad looking, flaccid little penis. The edges of the image blurred as my mind tried to grasp what the nice looking German doctor was saying.

(to be continued...)