Tuesday, August 30, 2011

The calm after the storm.

So it's been five weeks since I was blithely making grilled cheese sandwiches for supper and got a call from my sister that our dad was being life-flighted to Aultman Hospital in Canton, with bleeding in his brain.

The bleeding turned out to be a growth, one that was wrapped around a ventricle in the base of his brain, one that was too dangerous to biopsy, and which required testing virtually every other system of his body in order to try to find other cancerous areas that could be biopsied.

I was able to catch a ride to Ohio with my aunt Kathy and uncle Bill, who had been vacationing in the Outer Banks, and I got home in time to sort of "trade off" with my brother who had been there for two days and was leaving to head for a belated vacation with his family. My sister lives down the road from my folks, so she'd been dealing with everything from the start. She and I went together with Mom to the hospital the first day I was home, and she showed me where the coffee machine was, the lounge, the cafeteria--I felt like an employee on the first day of a new job.

The next three days, I took Mom to the hospital by myself and it was then that I rather rapidly started to fall apart. Well, the falling apart started on the first day I was home, but when it was just me and my mom driving to that hospital an hour away and sitting with my dad...that was when I started to crash.

We weren't even alone that much--we had some visitors, and my sister came out in the afternoons after work, and there were always doctors, nurses and other staff in and out. But for me, it was the first time I had ever had to "be there" for my parents, and I felt like a child in dress-up clothes who has just been told to do some impossibly grown-up task, like drive a car or
cook a gourmet meal. It seems ridiculous to feel that way at 40 years old, but I did.

From the time I got home, I couldn't eat or sleep, and finally crashed on Monday night, went to the ER, got some anxiety medication--which I couldn't take till the next night, since I had to be able to drive Mom to the hospital. My anxiety was about more than just Dad's health, it was about Dad's attitude and my response to it. In a nutshell, he had a very bad, very irrational response when he was diagnosed with prostate cancer seven years ago, and I couldn't face it happening again.

I have a good relationship with my dad, but it's complex, too, and there are things about him that really push my emotional buttons. So I just had this boiling stew of worry and anger and dread and fear and grief and anything else you'd care to name churning around inside me, and...let's just say that it was a blessing beyond measure when I was able to take that first Ativan on Tuesday night and feel some of that churning drop down to a lower level. It was still there, but I wasn't drowning in it.

From that point on, things got better. Wednesday, Dad was released. They still didn't know what was wrong with him, but it boosted all of us to have him back at home. I went out to pick up his meds that afternoon, and came back to find him and Mom in the kitchen, cooking up a stir-fry for supper, just basking in the normalcy and joy of it, and I was so glad.

At the end of the week, I caught another ride back to Virginia with my cousin Alan, who had come up for our annual family reunion (which I hadn't planned to attend, but was able to because of all this.) Six hours of conversation with Alan in the car about wonderful normal things helped me decompress from my week at home.

In fact, when I got home, I terribly missed all the people I'd been talking to, and all the talking I'd been doing. The whole week, I was on my cell phone talking, talking, talking to my sister, my brother, my sister-in-law, my aunts, my mother-in-law...and talking in person to my aunt Molly and my mom. That and the Ativan was what kept me going.

My aunts Carol and Kathy both gave me a safe place to vent and say what I needed to say, and Kathy and my sister-in-law Tracy really helped me come to an emotional place that I needed to come to, a place of true compassion for my dad. My aunt Molly was a rock for me that whole week--she fed me, hugged me, listened to me, counseled me, gave me a safe place to just sit and be. My mother-in-law prayed for me over the phone and I was able to instantly see the results of her prayers. I had so many people holding me up that week and I am so grateful.

And I was able to have a couple of very honest moments with my dad. I felt like I was finally able to give him the understanding that he needed. It helped me a lot, and he told me it helped him, too.

So I came home and walked around in a fog for a couple of weeks, wondering what had happened and what would happen and what path would I personally take from there. It was surreal to be plunged into a terrible crisis and then drive right out of it and come home to my regular life, where nothing had changed except me. I'm still processing all of that.

Most people who might be reading this know the happy twist at the end. Dad has been feeling good since he came home from the hospital. He was medicated for his dizziness and also for his depression, and both the meds, and I think, just getting back to his daily life, made him feel tremendously positive and good. And of course, we've all been delighted that he's feeling so good.

Last Monday, he had another MRI, to check the growth, and on Thursday he met with his oncologist. The oncologist told him that the growth--or whatever it was--is GONE. Whatever it was that was showing up in those scans--and through this whole thing, the oncologist has been very careful not to use the word "cancer"--but whatever it was, it isn't there any more.

To say we're all relieved, thrilled, humbled, grateful, doesn't even begin to express it. Five weeks ago, I was very afraid that my dad was going to die. Just last Monday I sent him a card for his 63rd birthday and wondered deep down if I would be sending him a card for his 64th.

Dad is still dizzy, though he says it's not as bad as it was earlier this summer. But he can function normally, he can drive, and he can go back to work. Some of the scans showed tremendous arthritis in his neck and shoulders, and that may be what is causing--and has caused (?)--his dizziness. I would certainly like to know what the meaning was of the thing that showed up on all those CAT scans and MRIs...but if it stays away forever, then I am content not to know.

Dad will, of course, have another follow-up MRI in six weeks, and I'm hoping something can be done to address his remaining dizziness. There is still more to this journey, though it doesn't look bleak now. When Dad was in the hospital having test after test with no real answers, I told Mom that it was like we were in a car with the gear in neutral, looking at a whole array of roads in front of us, and we were just waiting for someone to put the car in gear and move us down a road. So now we've finally done it, we've started down a road and the view is better than we dared to hope for.

When my mom called me with the good news on Thursday, I had been spending the day preparing for a different kind of storm, Hurricane Irene. She blew into town on Saturday morning and sent a tree limb through the roof of our woodshed just like a spear, but that woodshed is the ugliest thing in the world and slated to come down someday, anyway. We were without power for just under 48 hours, and that was that--for us, anyway. It's been a different story for lots of other people. A little boy here in our town was crushed in his own home by a falling tree on Saturday morning...that's the kind of tragedy you just can't understand.

Some people feel like Hurricane Irene was hyped too much, but I appreciated the hype! I appreciated knowing what was coming at me and if it was getting stronger or weaker. As it turned out, it was weaker than predicted at the beginning of the week, but it was still bad enough.

So...a storm comes at you. You try to prepare, but you know there's no way to prepare if it really turns out to be a horrible one. It blows through your life, churns things around, and leaves you a little battered but deeply grateful that it wasn't worse--and deeply mindful that it is worse for many, many other people, every day. That's been the theme of the month of August. Here's hoping September is storm-free!

Tuesday, August 09, 2011

Tuesday morning update.

I feel like I could write a book about the past ten days of our lives, and the story is still not over yet!

Dad was able to leave the hospital last Wednesday and come home, which made him thrilled as well as the rest of us. He plunged right in to working in his garden and starting the summer canning and freezing process that was interrupted by his sickness and hospital stay. He's able to compensate for his dizziness, and the various medications he's taking are helping with that, too and with the headaches.

Dad went back for an appointment with his oncologist yesterday and the verdict was that lymphoma has definitely been ruled out, just as cancer has been ruled out in all of Dad's other system: lungs, stomach, spine, etc.. Dr. Friedman at Duke University seems to be as stymied by Dad's scans as the doctors at home are, but he feels that Dad should get on with his normal life and have regular scans and monitoring. Perhaps at some point the growth in his brain will be able to be biopsied and treated, we don't know.

Still so many unanswered questions, but for right now this is a great outcome. Dad is not a person to be patient with spending large amounts of time in hospitals. He is not a person to be patient with a long, drawn-out treatment program. The best thing in the world for him is to be able to just live his everyday life, and if that's what the doctors want him to do right now, so much the better.

Right now Dad can work in his garden, put up his summer produce, putter in his garage, enjoy the company of his grandkids, and most of all, be with my mom, who loves him so very much. A week ago--two weeks ago--we didn't know if any of those things would ever happen again. He is feeling positive and energetic (hopefully that will last as they lessen his steroid dose) and I say more power to him!

We still don't know where this path we're all on will lead us, but God has been faithful to us these past weeks, and I can't help but believe that he will continue to be faithful and provide for us as he has been doing all along. We are so grateful. Thank you to all of you who have prayed and who will continue to pray--your prayers have been an almost physical presence to us, an army standing right at our backs in support, and we have seen their results in so many ways, both large and small.

Wednesday, August 03, 2011

Wednesday morning update

Yesterday we were able to find out the results of a spinal tap Dad had on Monday. The white blood cell count in his spinal fluid is up a little--not a lot, but enough to be a flag. The oncologist said this could indicate lymphoma. He thought he would have more information for us later in the day from some of the other tests, but though we waited all day, nothing had come through by the end of the day. This was very hard.

Mom and I are heading out this morning and meeting with the oncologist at 9 AM. I'm not expecting that he'll have much more to tell us, but we are expecting to be able to bring Dad home today. It seems like the tests are pretty much done, and now it's just waiting for the information to slowly--so slowly--trickle in. Then we can go on from there.

Again, we are just surrounded with angels in human form who are helping us in every way that they can. We are so grateful.

Monday, August 01, 2011

Update on Dad.

Dad was life-flighted to Aultman Hospital in Canton last Wednesday afternoon, with what appeared to be bleeding in his brain. The next day we were told that he has a mass in his brain. That feels like five weeks ago instead of five days ago.

As of Monday morning, this is where we stand. The doctors are frankly puzzled. The mass in Dad's brain is not presenting like a typical tumor. It's in a spot that's too dangerous even to biopsy. So on Thursday, Friday and Saturday, Dad's been having a series of MRIs and MRAs to try to find places elsewhere in his body that can be biopsied--cancer in other spots. A few odd spots have turned up, but nothing that's even large enough to biopsy, and as far as I can tell, nothing that appears to be cancerous.

Yesterday afternoon we met with the oncologist. He is going to send Dad's scans to a top neurosurgeon at Duke University to see what he thinks. It was a little discouraging, because that was really the only option he presented at this point. I think Dad has them stumped.

None of the doctors has said the word "cancer" yet. They are still not 100% positive that that's what it is. They've also found that there is no bleeding in Dad's brain. With every new tidbit of information, we don't know whether to feel hopeful or more fearful.

Dad is ready to get out of the hospital and come home. He's hanging on, but he's having a very hard time staying patient and keeping it together. Honestly, we all are.

Dad is getting excellent care from the nurses and doctors at Aultmen, and we have all been just blanketed with love and help from our extended family and our friends. I have felt literally surrounded with prayers and it is helping me to cope. I feel completely inadequate to deal with this situation and to provide the right help to my parents...but I can feel myself being held up by invisible arms. Please, keep praying.

Mom is doing okay, my sister and brother are doing okay. We've fallen apart a few times, but we are doing okay. Please hold us all in your prayers, and also my brother-in-law and my niece and nephew, my sister-in-law and my two nieces, and Todd. Thank you all so much.