Monday, December 31, 2007
Blessings from heaven
Well, true to the way this year has been going I was getting ready to go to the bat mitzvah early Saturday and had the dog run under my legs and knocked me down face first onto the kitchen floor. After a trip to the ER I found myself in a cast with a broken right wrist! plus bruised ribs etc.
So I am typing this very slowly with my left hand and wondering what the heck will happen next.
My sister said trouble is a blessing from God. I say, couldn't he bless someone else for awhile?
Friday, December 28, 2007
Visitors welcome
Keith is still not quite ready to come home, which is good, because no one will be at home this weekend -- the "kids" and I are attending Keith's cousin's bat mitvah in Tampa (a two-day affair) and he will be all alone. That was a pathetic attempt at sympathy guys! So, come on down to Florida Hospital if you get a chance and visit Keith for a bit.
Keith is in Room 3305 in the main Florida Hospital near Orange Ave. -- if you park in the Medical Plaza lot (they charge up to $4 for parking, but it's less if you are there for a short time) go to the 3rd floor and take the walkway to the hospital, which will then take you down a long escalator. Once you get to the hallway at the bottom go straight ahead and follow the signs for the B elevators, then go to the third floor and he's just down the hall.
You can also valet park for $5 at the entrance to the actual hospital. Or, do what I often do, find free street parking next to the parking lot and walk into the side entrance to the garage where the physicians park and take the elevator up to the 3rd floor and follow the directions above.
Thursday, December 27, 2007
Keith has his computer -- keep an eye out for his blog again
Today was a pretty good day again. The pulmonary doctor said he was doing wonderfully and they don't need to see him much any more. The doctors also said they might send him home soon, since his progress has been so good. Aside from pain from the incision sites he is feeling remarkable well. He is even eating some real food today, although in very small amounts at a time.
Also wanted to say thanks for the beautiful plant sent by Charlotte and the newsroom -- Keith got quite emotional when it arrived in his room. It is up on his shelf where he can see it easily. The cards, blog comments, phone calls and visits have meant a great deal. He is very anxious to get back to work. I believe boredom with being sick is definitely setting in.
Keith's mom is still holding her own, but also still in the ICU at ORMC. In spite of her own difficulties she always seems to be more worried about Keith than herself. She's a tough old lady, so we have hopes that she will fool everyone again and make it home soon.
Thanks again to all for your prayers and good wishes.
Wednesday, December 26, 2007
More good news
They have moved him to room 3305 and he is now out of the ICU.
His progress has been phenomenal so far -- let's keep our fingers crossed.
Tuesday, December 25, 2007
A Merry Christmas to all
Today was a very Merry Christmas for the Kohns. Dr. Boyer came in and gave us a thumb's up on Keith's progress. They then removed the nasal tube that was draining his stomach and new esophagus, along with the chest tubes. After only a few minutes Keith felt more like a person again.
At the same time, our daughters called while visiting Keith's mom and told us that she was breathing completely on her own with the trach in place and was doing so well they were going to transfer her today into their intermediate care facility on the ORMC campus to renew the "weaning" process of getting her back in shape for rehabilitation again.
Keith is able to munch on ice chips now and his esophagus seems to be healing well. Tomorrow they plan to have him walking around the ICU to get him moving a bit more.
He is in good spirits, especially since all pathology reports have returned negative for cancer.
Can't beat that for a Merry Christmas -- New Year's is looking up.
Sunday, December 23, 2007
Not for the squeamish...
Here is Keith in the prep room before his surgery looking a lot happier than after his surgery.
Above is Keith after they placed the first IV lines and the nurse was getting ready to give him the "happy juice" that makes a person amenable to having their guts played with by strangers.
This final photo Keith took today when they were checking his stitches (staples actually) on his side and abdomen, along with the miscellaneous tubes that are draining all the bad stuff. Leave it to Keith to have the presence of mind to snap pictures during such a time.
Okay -- yuck. I agree. This officially gives him the title of "Borg Keith" with battle scars and everything.
On a positive side Keith is doing great so far. There is pain obviously, but the medications are managing that pretty well. He is sitting up in the recliner during the day and the nurse already had him walk around the ICU twice this afternoon. Coughing seems to hurt the most and the medication makes him a bit loopy (but not that much more than normal...), but the hardest part is feeling lonely. Keith misses being home with the family. Visiting is just not good enough.
We are counting the days and crossing our fingers. Our luck is improving (although not enough to win the Lotto last night). Keep those thoughts and prayers flowing -- they seem to be working. Thanks.
Saturday, December 22, 2007
Looking pretty good, considering...
Well, I did marry a professional communicator, so I shouldn't be surprised when he insists on communicating even when he should be resting.
He looked remarkably well, in spite of all the tubes and wires, sitting in the recliner watching Bravo on TV. By the way, it is the oldest little TV I have seen in years -- Keith has already learned where to bang on it when the sound doesn't work. It's on a moveable arm attached to the wall.
I brought him his Soduko books, reading glasses, and his palm pilot -- and his all important cell phone. But I think he mostly wanted his phone, if only to play games on it when he feels a bit better.
I brought our "baby" Karen to see her dad. She's the one who says he looks like a baby ostrich right now with his fuzzy head. They had just moved Keith back into his bed, so he was kind of worn out by that, but he rallied for a little while to make jokes with his "favorite" (so she claims) daughter.
Aimee and her boyfriend Luis and older daughter Kim will all join me tonight to visit for a little while and then we will go to ORMC to the ICU there to see Keith's mom (who got an infection and is back on the ventilator again).
This running back and forth between ICUs is getting pretty crazy. Keith is very worried about his mom and she is very worried about him. In the meantime I have trouble keeping track of which doctor or nurse I have spoken to recently and which elevator to take to which floor of each hospital. Christmas has taken a back seat to everything (boy did it cost alot to send the grandkids their gifts via FedEx today!) -- except for those few I haven't bought any presents, been able to put up the tree, or buy food for Christmas eve. I sure hope the stores aren't too crowded tomorrow!
But, all of that is just side stuff. What is really important is the health and well being of Keith and Bea -- and the girls all understand that too. So, this year's celebration will be very small. We will share it at home and at the hospitals and be glad for the good things -- a new son-in-law, a cancer that hasn't spread and was operable, a new job teaching high school again, healthy children and grandchildren, and a grandma Bea who, in spite of her terrible ordeal, is still more concerned about her son and his family than herself.
My greatest gift this year will be the return of my husband for the new year and a quiet uneventful 2008.
Thanks for all your prayers and good wishes. I am relaying all messages to Keith and as soon as he gets into his regular room in a few days I will bring his computer to him so he can communicate more directly with everyone. The support of his Sentinel friends has meant a great deal to him and he is anxious to get back to work.
Have a safe and joyful holiday.
Friday, December 21, 2007
What a day!
They took Keith to be prepped pretty quickly, but I had to wait for awhile and fell asleep in the chair. After the second time they called for me (because of my little nap) I found Keith in one of those little cubicles, looking chilly and nervous. He joked that he still had time to change his mind -- I said 'no way.' And we sat together trying to avoid any serious conversation. A very nice man came in and shaved Keith's chest and the inside of his arms (to avoid tape sticking) and they took him off to take a shower and then we waited a bit more.
Finally, we moved upstairs to the operating area and once I found the place (couldn't use the same elevator) I waited for them to get him ready in the final staging area. The cardiac surgery waiting area was staffed with a volunteer, who was absolutely marvelous (a former cardiac patient himself). They offered help, a kind ear and assured me I would be contacted as soon as the surgery was over. Another staffer came out to give me a tour of the area and take me to Keith. At this point they had managed to put in various IVs. We spoke to the several doctors and nurses and everyone explained everything they were doing, or were about to do, clearly and kindly. One of the doctors described Keith's surgeon, Dr. Boyer, as one of the most gifted surgeons he had ever seen. (That's nice to hear!) Keith, still nervous, joked a bit and we gave a kiss goodbye.
I had to go to work for a couple of hours, but while I was there Dr. Boyer called and let me know that the operation went very smoothly and that there had been no complications. He also said he went ahead and took a more thorough sample of Keith's liver while he had the chance, just to be on the safe side. He said his liver had taken a bit of a beating from the radiation treatments, but that it shouldn't be an issue later.
Once I got to the cardiac intensive care unit where they had to put him after the operation (it was a very busy day evidently and beds were filling up) he was in a lot of pain and kind of sleepy, but a bit later he was more alert and was able to talk to me and smile. I told him about Boyer taking more of his liver and he quipped "did he get some onions to go with it?" That's my Keith, even full of tubes, with a breathing mask and in pain, he still manages to see the humor in a situation.
Right now Keith is asleep and I'm waiting to see him when visiting hours begin again for a little while. I feel very relieved and I think it will be very strange around the house tonight when I go home. We've been apart before, of course, but this feels different. Unnatural.
I know Keith will recover quickly. His battle scars with cancer will eventually heal and we will share stories of these days in the years ahead. But, for now, I will spend my evening sending him my love and I know he will feel that love even though this illness separates us physically.
As soon as Keith is out of the ICU and into a regular room I will post his room number and a phone number. Until then please keep Keith in your thoughts and prayers.
Thanks to all. Keep well and have a wonderful evening.
Tuesday, December 18, 2007
Making a choice
It's been very tense recently. Except for fatigue, Keith seems to feel pretty well most of the time, but there is a cloud of anxiety that has blanketed all of our activities. Often that anxiety manifests itself as irritability and impatience. Fear is in the background (and sometimes in the foreground as well, such as with the liver cancer scare). It is a strange way to live -- on the edge of a cliff, swaying with the wind, always feeling you are about to fall.
Many have written that when a person knows that death is imminent life takes on an almost miraculous feel. There is a sharp awareness of each moment. But, there is another state of being that is less explored. The time spent waiting to get well, or waiting to be told there is no hope, is a state when moments are spent from doctor's appointment to doctor's appointment, from procedure to procedure. Precious moments spent in tiny spaces in hospitals filled with mysterious technology and busy people scurrying around while you lay on a bed with tubes in your arms wondering what is going to happen to you. Meanwhile the day outside is clear and bright and cool. A day better spent on a sailboat if all this doesn't work out the right way.
There were no Hannukah candles lit this year. Only a few Christmas decorations are up. No lights on the trees outside. Keith will likely be in the hospital and things just don't seem put together in the usual way. Gift-giving seems unimportant when the only gift any of us really want is our husband/dad/son healthy and strong.
Time is the gift God gives us. It seems so endless while we are young and so impossibly brief as we age. It is the reality of the present and also the memories of the past. Time is the possibilty of what is to come and those possibilities are infinite. Every choice, no matter how small, affects the next choice, the next moment in time, until the dominoes are falling in ways you could never have imagined. Some of those choices are amazingly wonderful, and others impossibly tragic. I have often marveled at the series of life events that brought Keith and I together. Shifts and changes that seemed to push and shove us into the same time and space so that we could then make choices together. Since then time has been pretty good to us. We have made choices to have "too many" children together and we are both so glad that we did. We changed jobs and sometimes careers that have placed us in locations where we met other people who have made a great difference in our lives. We have spent our time together productively (and sometimes wastefully), but the main thing is: we have spent our time together.
Time feels like an enemy. But that is only because we cannot see beyond the horizon of this life that we presently live. We have to accept the time that is given us and use it as best we can. Just writing these words has helped me to reaffirm my belief that time must be valued and that our place in the universe, as small as it is, may be more important that we realize. Each dominoe must be in place. As each individual choice affects another, so does each life affect another. From the beginning of time until the end of the universe, every moment and every life is connected. Keith's life touches many others. He has affected my life profoundly for the better for 28 years, and that is something remarkable indeed.
So today, while we go through yet another lengthy "procedure" I will keep these thoughts in mind and embrace the time we spend together -- the cool, clear day will be outside, but the warmth of human love will be inside the tiny room filled with machines and busy people.
Friday, December 14, 2007
Waiting game is being tossed out this weekend
We've decided that the only way to deal with the waiting involved in this process is to ignore it as much as possible and keep busy doing everyday things. So, instead of sitting by the phone waiting for the results of the liver biopsy Keith bought a new car (holy crap! he gave up his Mazda RX8 for a practical Saturn Vue that is easier to get in and out of); we're going to finish moving Keith's mom's stuff out of her apartment in South Florida (rather I will move the stuff and Keith will tell me how to do things, and I will tell him to... well, you get the picture); then we're going to have some FUN by decorating the house for the holidays (again, I set up the tree and everyone else tells me how to do it, and I tell them to ... ); and by going to Busch Gardens for awhile this Sunday when it is supposed to be chilly out (yah!!!).
Waiting is the enemy -- it is the spirit of negativity -- it is the stealer of enjoyment -- it turns everything sour. We refuse to be controlled by this monster any longer. Waiting is a waste of precious time, and if nothing else, we've learned that time really is precious and should never be squandered.
So, off we go to Del Rey Beach to pack up piles of dishes (Keith's mom has a thing about saving dishes for her granddaughters), and the last of her other stuff, -- using the bright and shiny gold Vue with the built-in hitch (perfect for towing a sailboat, Keith has explained in order to get me to be happy with the new car) and a little U-haul trailer.
Then off we go into the garage to try to find all those packed Christmas items and clutter up the house with them.
Then off we go to Busch Gardens to enjoy a beautiful day of cool breezes among the equally cool animals. No roller coasters allowed (damn!) but walking is good for the body and the soul and there is always a nice lunch to be had at the Crown Colony and baby animals in the nursery.
So in spite of this week's scares and delays we intend to enjoy this weekend and accomplish some stuff and be grateful for the time we spend together as a family.
Waiting is wasteful. Living is a better use of our time.
Tuesday, December 11, 2007
Power of music and art
While he has been doing those things I have been traveling to Baltimore and Washington and back. Then went to mom-in-law's place to close up her apartment, with the help of Aimee and Luis. Got a new job teaching high school English.
Why is it that everything always happens simultaneously? Does Murphy's Law always have to apply?
The Jethro Tull concert with our friends Ted and Mary Ann was marvelous. Ian Anderson's flute is almost magical. It is as if the music just flows directly out of his soul. He looks like a crazed pirate on stage, but the sounds are heavenly. (The photo of Anderson is from the group's website.) All of the musicians were phenomenal, but I was especially impressed by guitarist Martin Barre who soared on the electric and acoustic guitar and John O'Hara who was positively amazing on keyboards (including the accordian!). O'Hara evidently also scores and conducts Anderson's orchestral work.
Keith and I both felt transported by the music. It had been a long time since we had attended a concert. I think maybe too long. I had forgotten how truly wonderful it is to become lost in a live performance that way. When all of this illness stuff is behind us I think we will need to make a stronger effort to include such things more regularly in our life.
It is very easy to forget the importance of art, music and drama. Whether it is standing in front of an exquisite painting by Van Gogh or Monet, or listening to the sparkling sounds of the flute dancing with a mandolin in a crazy medley of music celebrating America by a Scotsman with boundless energy and talent -- every such experience is enriching beyond measure.
Cancer drops into the background during these experiences. Keith and I hold hands in the dark theater and feel ourselves lifted into another world -- one with beauty, joy and clarity of thought and feeling. We don't spend our time waiting for life to begin -- we are living our life together at these times.
So, thank you to our long-term friends. And also thank you to the musicians who gave us so much pleasure Monday night. Such a wonderful gift in so many ways.
Monday, December 3, 2007
The party's over...
Keith danced with Jennifer to the tune of "Sunrise, Sunset." It was a wonderful moment.
Bea had a fantastic time and it was great that she could be a part of the wedding. She looked very nice in her dressy outfit. Still can hardly believe she made it.
Keith held up amazingly well -- there was so much to do with picking up his mom and aunts in South Florida, shopping, rehearsal, party after the rehearsal, and all the wedding day stuff. It was neat picking out a suit for Elliot to wear. Both grandkids looked fantastic all dressed up as flower girl and ring bearer.
About the only time I get to dance with Keith is at a wedding, so it was really nice to be able to do that. He looked very handsome in his suit.
Speaking of dancing. Keith managed to get the "Chicken" dance into the night. Go Keith!
Jennifer and Chris looked so amazingly happy. Jennifer really did "glow." She reminded us of a 40s movie star.
It was great to see so many family and friends. With so many difficult things going on it's really wonderful to be able to share this kind of event with those we care about.
The next stage now begins. Facing the esophagus operation and getting Keith through safely. I think we'll just celebrate Hannukah, since it looks like he'll be in the hospital over Christmas. Although the first day of Hannukah is Wednesday and I won't be home until Thursday.
Oh, did I mention I'm back on the road to Maryland with my oldest daughter Melissa and my grandchildren, Remi and Elliot? Yep. Back on I-95 again (my favorite). This time, though, I'm going to take a day to visit Washington D.C. I love the art museums and I can pick up some cool presents at the museums.
One day at a time -- each is precious. That's what these past months have taught us. Our daughters have always given us love and affection. Jennifer's wedding reminded us that they also bring new people into the family to add to that circle of love. A wedding unites not only a couple, but the greater families as well. Chris is now a son. His parents are becoming not only in-laws, but friends. Our family has grown and will continue to grow as each daughter marries. What a wonderful thing indeed!
I never would have pictured all this on that fateful day in January, 1980 at USF's Oracle newspaper when Keith asked me if I wanted to go to Busch Gardens to be in the audience of the Dinah Shore show after he answered a call at the paper from their publicist. It has been a remarkable journey. It will continue to be so.
Wednesday, November 28, 2007
Raptures over the fall
It's cool up here!!! Yay! The leaves have changed color and the air is dry and cool. (I can tell because I get a static electric shock every time I touch something.) I forgot how much I love the fall in the north.
Flight was great. On time. Smooth. Beautiful skies. Easily got through both terminals. Boy, that doesn't happen too often.
Florida is a great place, but I have really missed the climate here. The Canadian in me comes out this time of year. By December I want to turn off the air conditioner!
Keith, on the other hand, seems to always be cold lately. More than usual. So our tug of war with the temperature has become a battle of wits as to who can change the setting on the AC quicker. I turn on the fan, Keith turns it off. I fling off all the covers, Keith bundles up. I open the windows... you get the picture.
So, for now, I get to enjoy the cold air all by myself with no conflict. Keith can enjoy the 80 degree temperatures while I luxuriate in icy cold winds and falling leaves.
Jennifer's wedding has a winter theme -- so I guess I'll have to be satisfied with pretend snowflakes for my cold weather "fix." I wonder if I could get Keith to go to the ICE thing at Gaylord Palms before he has his surgery?
On a separate note -- Keith is one of the hardest people to buy a birthday gift for. So, for now, I am sending him my love and affection through this blog until we are together again tomorrow.
A birthday wish
For years now we've had a friendly "battle" of the ages. As in, I'm older and Keith likes to make jokes about it. Now he makes jokes about just wanting to make it to 50.
All that fuss I made about turning 50 seems pretty petty now.
We do fuss a great deal about getting older in our American culture. Getting older is seen as something to be feared and denied (as if we have any choice in the matter). We tend to talk about "the elderly" as if they were aliens from some other planet, rather than simply ourselves if we manage to live long enough.
I hated turning 30, 40 and 50. And I'll probably hate turning 60 too. But I look forward to hating it as well. Growing old together is now a goal for us. A goal we once took for granted.
Keith and I have stuck together through a great deal of turmoil at times. We have made lots of little mistakes and a few big ones. However, the one thing we could always see ahead was the two of us together, being cool grandparents together. Taking our grandkids on roller coasters, swimming, sailing and on trips across the country is one of our greatest joys.
We were even developing this neat scenario for retiring together on a larger sailboat and taking off whenever the urge took us. We want to go to Europe and England together. We have stories to write.
Cancer has put everything on hold. Keith is so anxious for things to just get done he would rather have the surgery just to move forward. The waiting to see what will happen seems to be the worst of all. Waiting for test results. Waiting for a response to treatment. Waiting to feel better. Waiting for a new staging, a new prognosis. Waiting. Waiting. And more waiting. It feels endless.
In the end, we are waiting for life to begin again. We want to stop waiting and go back to doing. We want to celebrate birthdays, anniversaries, weddings, graduations and all the million small events that comprise our lives. We want to grow old together.
I believe this will all happen in time. I'm willing to wait just a little longer.
Happy Birthday my love. I look forward to you turning 50 so you too can get the senior discount at Sea World.
Tuesday, November 20, 2007
Lucky after all
Knowing that there are people who care is so important to recovery. It has helped Keith stay connected and feel that there really will be life after cancer. It is so difficult for a man who has worked hard all his life to be forced to stay home and rest. Feeling like an invalid can actually make a person an invalid! (I hate irony.) So often Keith feels guilty if he can't help me with something, or if he feels sick or fatigued. It must seem like weakness to him (damn our society and what it does to the male psyche!), but it's not. His job right now is to recover enough to survive surgery, which, in turn, will require that he recover from in order to survive the cancer. It all sounds like a Joseph Heller story. (Catch 22 for you young'uns.)
Knowing there are people out there rooting for him is an amazing help. It boosts the spirit. It takes some of the loneliness out of the battle. And it is, ultimately, a very lonely battle.
Our bodies are the shelter of our souls and when we connect in these small ways I believe we create bridges between us. We are each separate and apart, yet still tied together through the bonds of friendship and affection. When we help each other, we strengthen ourselves.
Thank you. Everyone. You are all a blessing in our lives.
Saturday, November 17, 2007
Playing with metaphors
The surgery will require a great deal of strength on Keith's part and a fantastic amount of skill on the part of Dr. Boyer. He assured us that he has a lot of experience doing this surgery, which I believe is even more dangerous than open heart surgery. He also told us he has a high success rate. Since the mortality rate in some parts of the country are as high as 25 percent or more and his runs in the 1 to 2 percent rate, I feel like we just got lucky for a change.
Keith is still doing amazingly well, but at the same time is showing fatigue. He is so tired of the stomach tube, which he hasn't even had to use. And when the chemo pump is finally removed I think we're going to celebrate by doing something special.
We are closing in on our daughter Jennifer's wedding date. Keith's mom is finally in rehab and continuing to improve. The weather has become as beautiful as it can be (ah, to go sailing again). So life continues to "get better" as well.
Through these difficult weeks (which have been complicated by other personal matters that I can't write about here) Keith and I have been redefining our relationship as a couple and discovering that (surprise!) we have become the anchor for a very large family both younger and older than us. At some point in time we became (gasp) grownups.
Now you may laugh and think -- for goodness sake, you are a couple in your 40s (and 50s) with a large family, of course you're grownups! Yes, that's true. But until this year there was always this feeling of being kind of young and carefree. Life would always work out without much effort on our part. Before we just helped our kids because, well, they were our kids! Now they are working adults and their problems are now grownup problems and we are their anchor -- where they turn for guidance with big things that are new to them. My sister doesn't have a family of her own (unless you count three hyperactive pomeranians) so we offer her a family life whenever she feels the need for one. Keith's mom, who has helped us tremendously over the years we were raising our kids, is now in need of an anchor in her own storm of illness and trouble.
Sometimes I think we are not only the anchor, but the entire ship. Our lives are so entertwined with each other it is sometimes hard to extricate the parts that are uniquely our own.
Where is this rambling metaphor going? I just realized it myself. Keith is the ship and the anchor for this family (always has been since I met him when he was only 20 years old). The thought of him not making it through this cancer terrifies all of us . It is Keith the girls call when they need help. It is Keith I call on when I am afraid, angry, joyful, or just bored. It is Keith who calls his mother every day just so she knows that someone is looking out for her. It is Keith who knows the importance of the words "I love you" not just to his wife, but to his mother, children, and grandchildren. Even Jennifer's fiance Chris and Aimee's boyfriend Luis will come to Keith for help and guidance. Because they all know what I know -- that Keith cares about them and will help them if it is possible.
This family is a ship of love and caring. (That does not mean we never fight. That would be unrealistic. We have plenty of disagreements.) Keith has been the kind of father to his children I dreamed of growing up. He talks, he listens, he cares, he loves them -- and he tells them he loves them so there is no mistaking or having to guess his feelings. The family has grown up strong and healthy because of Keith. Bea has survived the most difficult time of her life with his steady support. Even my sister, whom I love dearly, who has a fairly low level of expectations when it comes to men, knows that Keith is a wonderful man.
We have not had a perfect marriage by any means. There have been a few times when we came close to splitting up. When a person feels unhappy about something one of the first responses seems to be to look at your partner and blame them. It's stupid, but natural. But, there has been one defining feature in our marriage and that has been our ability to talk to each other and say the things that need to be said. We listen. This "ship of fools" sails with Keith at the helm. I just raise the sails and wait for the wind to arrive. And sometimes we have to throw out the anchor and wait for the storm to pass.
Eventually, all storms do pass and the sky will be clear again.
Monday, November 12, 2007
I'm back
I am absolutely amazed at Keith's resilience and stamina while undergoing chemo and radiation. He is still driving to the doctors by himself. He was able to grill hotdogs for awhile on Sunday while we celebrated one of our daughter's birthdays. He is still able to go out to eat (although we take our time with eating) from time to time. Although he tires easily, he is still able to do quite a bit around the house. Nausea has been more of a problem, but he deals with it as gracefully as possible. He still has his sense of humor. He is a bit grumpy at times when he's tired, but so are we all.
The human ability to cope with difficult situations is really quite remarkable. Serious illness often brings out the best in people. It requires us to find reserves of strength. It forces us to focus on important matters. It causes us to intensely notice the quality of our lives. When facing our mortality and our fragility we must look to others as well as ourselves. We are forced to open our lives and become vulnerable emotionally and physically. Our lives are no longer exclusively our own as we must trust in the expertise of stangers to help us get better.
When my mother was diagnosed with terminal cancer I was the one who took the call from the doctor and had to tell my mother she had a short time to live. This was a conversation I never imagined I would ever have with my mom. I sat in that room and calmly explained what was wrong and what kinds of treatments they recommended. Mom was also calm. She knew it was coming, but at the same time, it was still a shock. She smiled and made a joke about not getting to go to Las Vegas with me. She asked questions. She accepted everything I said. She accepted her fate.
Later, I came to understand how bad the cancer had become in her. The lung cancer had spread to her brain, and to the soft tissues of her abdomen. She had developed tunnel vision, could not read, and could not follow simple steps, such as how to turn on the shower. She couldn't remember many important people and events. She called me Theresa a great deal (my sister's name). Sitting waiting for her radiation treatment I asked her if she wanted to go see her sister in Ottawa. She turned to me with a puzzled look on her face and asked, "I have a sister?"
Mom was one of nine children -- and she couldn't remember any of them.
After her radiation treatments on her brain I took her to see her great-grandchildren before her chemo started. We spent a long weekend in picnics and zoo visits with her older grandchildren and three great-grandchildren. She played ball with the kids and watched them roll down hills. They talked and laughed a lot. She was very weak and often felt confused, but at the same time delighted in the company of these children. In the car she told me "That was the best day in my entire life."
She meant it. Mom had reached that special point in her illness where the illness could no longer rob her of life. She had taken that day and made it a metaphor for her life -- joy in the moment. It finally struck home what she had tried to tell me for many years in words. Don't worry so much about the future that you lose sight of the present. Treasure the day that you have. Make the best of those brief moments.
Her favorite song was a Beatles tune that expressed her feelings about life -- Let It Be.
I think, perhaps, that is an anthem I would like to try to follow, although my personality is quite different from my mother's. I have trouble "letting things be." I worry. I stress. I over-analyze at times. I think and think and think until my brain feels like a swirl of images. I see Keith's illness in every possible scenario, from best to worst. I read medical abstracts and studies until I'm falling over with fatigue. I bounce from acceptance to anger to determination to despair and then start the process all over again. I look at Keith and think, "how can you be so calm?" Then realize how stupid that thought is. He is calm because there is no other choice. You have to accept those things that cannot be changed, or you cannot survive. The ability to cope is no miracle. It is an imperative. We cope or we cannot function. We cope and move on because we must. We cope and adapt and accept.
The Beatles and my mother were right -- Let It Be.
Accept. Fight. Move On. Live. There is no other choice. Stress and worry simply suck the joy out of life and joy is there for the taking even on the darkest days. Sometimes the joy is a brief moment. Sometimes the joy is expansive and encompasses our lives from day to day.
Keith finds those tiny moments. As did my mother. Many do the same each day who face similar challenges. It's the only way.
Sunday, October 28, 2007
Microcosm
I have been fighting off pneumonia with antibiotics, and all the various medicines needed for fever, cough and the like. Good thing I went to the doctor and got treated. I actually just had an appointment for a physical, but while there found out my "cold" had turned into something a whole lot more.
Keith has been great, as has my daughter Kim. My bosses at school have been great as well, being very understanding.
I'm hoping (and hoping some more) that Keith will avoid this somehow. I hope everyone in the family does. We tried to be careful but this illness brought home how difficult it is to keep germs away. You can wash hands, disinfect surfaces but all those mysterious tiny organisms are waiting -- silent, invisible and potentially dangerous, even deadly.
I have always found the microscopic world fascinating. The hidden lives of things beyond our sight and even comprehension is so immense. How strange to think of it that way. Microbes and viruses live in an environment that is equivalent to the wide open spaces of our own universe. This innerverse is created by us. We are their environment. We are their planets, vast plains, wide skies and distant stars. Perhaps when we are struck down by a cold it is not really much different than one of us cutting down a tree in a forest. Its life is connected to ours, affects ours, but is completely unaware of our existence as separate organisms. It wants to live. We want to live. The universe is simply full of life striving to exist in whatever way given it.
So, I will try to understand the germ afflicting me is simply trying to live out its existence. I will feel no anger toward it. I will accept it as a part of the universe around me. And I will assert my own destiny as a living being to fill my body with chemicals to shake off its hold on me.
Cancer is much the same. The life of cells is a magical one that is beyond the understanding of most of us. Cells drive every part of our amazing bodies. They can adapt and change as needed. And sometimes they become unmanageable -- like a teenager that doesn't know when to stop a behavior that has become destructive. So we struggle to put the brakes on them. We have to force them to stop what they are doing. The life of those cells is in conflict with our life. It becomes a struggle to exist.
Innerverse. Universe. From tiny cell to galaxy -- life is everywhere. We can't become angry. But we can become determined to survive.
Tuesday, October 23, 2007
What is normal?
In spite of it all, though, he made eggplant parmesan for dinner and had Karen, Aimee and Luis join us. I guess the long nap helped.
I am mixed on whether it is better for him to keep trying to do things, or take it easier. Under normal circumstances a person feels better with exercise. Does that still apply now?
Questions. Questions. And more questions. Cancer turns everything upside down, sideways, backwards and every other way, but the right way. What are the best things to eat? What should be avoided? What is normal? What is not?
So we read. We write. We talk to professionals. We talk to friends. Then we read and write some more.
We hope that it will all just be over. We wait anxiously for that day. We just want to go back to normal again. Normal has become such a wonderful word. Who ever would have thought that would be a goal in life? We take so much for granted. But, I guess that is normal.
Monday, October 22, 2007
Flu bugs and worry
Ordinarily this wouldn't feel like a big deal, but I'm terrified that I'll give it to Keith. The last thing he needs is a fever, or other flu symptoms. When I'm not asleep or feeling like I can't move, I'm washing hands, disinfecting things and worrying.
Dr. Z told me not to worry too much about it. We told him we've been mostly sleeping in separate rooms while I've been sick. He said that's not really needed. He's probably right. We live in the same house. Touch many of the same things. Share the same bathroom. So we wash hands a lot. I try to keep my distance as much as possible.
Keith has been amazing. He's the one with cancer, hooked up to all kinds of weird stuff. Yet he has fetched drinks, and cool cloths and medicine for me. I have felt so helpless. I'm not the one who is supposed to need help right now. This whole situation feels upside-down.
I guess I just need to learn to say 'thanks.' It's good to have such a caring family.
Thanks, honey. I love you.
Saturday, October 20, 2007
Goals
The wedding has become a goal and special marker in our lives. Keith's mom needs to get well enough to come to the wedding. Keith needs to be in recovery so he can walk Jenny down the aisle and dance with his daughter on her wedding day. It's the the good news of the family -- the one thing that we all look forward to. Family will come to see us. We will smile again. We will have fun together. We will welcome a son into our family -- one we already love from getting to know him over the past three years. Our family will grow and change in wonderful ways. It's such a great goal to have before us.
Another goal is harder to reach. Avoiding negative feelings. With cancer comes a certain amount of anger and irritability. Some of it is caused by lack of sleep. Some of it is caused by the overwhelming feelings of powerlessness against the disease.
Keith and I have been cranky with each other for a few days. There are times when I feel he is constantly critical of whatever I'm doing. At other times I know that he is saying ordinary things but it sounds like criticism because of the way that I feel at the time. I know it is likely because he isn't feeling well, emotionally or physically. But should I be "nice" about everything because he is ill? Probably. But, at the same time, that's not me. It's not normal for us either. We have always expressed our feelings, both positive and negative to each other. So, while we both avoid getting into any big arguments, once in a while we still get "snarky" with each other.
The negative feelings we avoid are the kind that relates to his illness. We talk of the future with a positive outlook. We talk of his recovery. We talk about getting better. It will happen.
For most of our lives as a couple we haven't really spent that much day-to-day time together since the kids were small. He worked nights. I worked days. At one point he worked days, and (of course) I got promoted to a job that had me on the night shift. My guess is that our sudden evenings together are both wonderful and a little stressful because it is such a change for us.
We need to get more sleep. We need to think before we speak. We need a banish as many "snarky" remarks as possible. But, will we never disagree while he has cancer? I doubt it. If I became some perfect little 50s wife who always agreed with her hubby and never had a bad day he WOULD think he was dying. So, we will settle for realistic goals -- to keep things in perspective, to enjoy our time together, to express our feelings as positively as possible. And, of course, to walk Jenny down the aisle and dance at her wedding.
Wednesday, October 17, 2007
The stuff of life
But at the end of the session there came a period when everyone started to connect on a deeper level. They shared some of their difficulties and fears. They also shared their hope and determination. Some were facing the early stages of cancer themselves. Some were in the process of dealing with the terminal condition of a spouse. Some were in recovery. Different stages, but all involved in the struggle for survival.
Isn't that all life ever really is? A struggle for survival?
In our modern world we don't fend off wild animals, search for food, build our own shelters or wonder why we fall ill. Many of us, with luck, live to a fairly advanced age. But ultimately, each of us faces our mortality while trying to keep it at bay as long as possible. We speak of death rates as if any of us can ever truly conquer death. Survival is measured in months and years. Although we are all made from the dust of stars -- we are far from immortal. Even stars eventually die.
Cancer, and other life-threatening diseases, force us to face up to our mortality. It reminds us that life is fleeting, precious and fragile. It challenges us to confront our beliefs and pulls us out of the mundane and the routine.
Strangely, it replaces some of those things with an odd rhythm and routine of its own. Radiation, chemo, scans, blood work, appointments, medicines. Rather than taking out the trash or cooking dinner life becomes a series of appointments. We watch. We wait. Then we wait some more.
We ask questions. "How do you feel?" (Please say ok.) "Can I help?" (Please say yes.) Someone else must take out the trash. Someone else must cook dinner. The job of the patient is to live.
Say that again.
The job of the cancer patient is to live.
"Then what is my job?" I ask myself.
The job of the cancer patient's spouse is to love unreservedly. To behave normally. To help when needed. To stay out of the way when required. To ask questions. To be silent. To let him sleep. To encourage him to eat. To do as many things together as is possible.
The job of the cancer patient's spouse is to live. For him. With him.
That is the job each of us has in this brief life of ours. To know that we are mortal. To fight to live as long and as well as possible. And, during that time, to love and care for each other. To enjoy the mundane and the sublime.
We are stardust. We are a part of the universe. We share life and death. Cancer can't take that away from us. Nothing can take that away from us.
Tuesday, October 16, 2007
About children
There were so many who knew about cancer -- knew about the dangers and the fears -- who had lost people they had loved to it. Others knew about heart attacks, accidents, diabetes and more. They understood that people could become ill, get hurt, even die. They felt these things deeply.
They ask about Keith often. They ask about my mother-in-law as well. They care about more than their small, sheltered lives in school and understand the wide world, at least a bit.
I will never again underestimate a child's understanding. They are capable of so much more than we think they are. They are not afraid to show their love and affection and they want the adults in their lives to be happy.
Since that day I am calmer and more focused as a teacher. I don't have to hide my feelings every moment of the day, because they know there are big things I am worried about. Because of that shared experience it is possible to live each day from moment to moment and take care of learning new words, reading new stories, writing paragraphs and all the multitude of minutia that is a part of the elementary school day. And sometimes, we talk -- about big things like life and love and the people we care about. About the wonderful things and the sad things. About what is really important -- being a caring, loving person who takes time to empathize with others.
Kid stuff, really.
Monday, October 15, 2007
On writing
From the time I was a child my father told me that someday I would find myself doing this -- working, writing, and living with the computer. It is now almost as easy as breathing to sit down at the keyboard and let the words flow onto the screen. Although not always the right words.
Keith is discovering the power of the computer in a new way as well. So many people are sharing his journey, including myself and our children. Wherever we are we can stop and read Keith's blog. Each day's writing is like a tiny miracle. Words that touch someone else for a moment. "Take a peak at me," it says.
I remember a long time ago, when I was quite young, riding in a car on a long trip across the country. My face pressed against the cold glass of the window I looked out at the cars zipping by. Glanced into other backseats filled with children and pillows and toys, also traveling to new places. I remember thinking that each individual is so locked inside their own little world that it would be impossible to get inside. How could we ever really get to know someone else? What were their lives like? Were those children happy, peaceful, contented, cared for, anxious, fearful? What were they thinking? As a child I was taught that we could never understand any of the mysteries of the universe until the afterlife.
All that is only partially true. This tiny miracle of instant communication allows each of us to gaze into the minds and hearts of the other. Keith is able to chronicle his fight with cancer and, in doing so, touch the lives of others. We both share each other's thoughts when we read the other's writing as well. Personal, universal -- intimate, public -- it's a dichotomy of inner and outer worlds colliding in a beautiful explosion of technology and one of the oldest forms of communication -- the written word.
Miracles daily. Who knew?
Saturday, October 13, 2007
Some words about communication
While he is gone Kim and I are going to tackle some of the practical aspects of living. All those boxes of stuff from the medical supply house have to go somewhere. The house needs to be cleaned and disinfected top to bottom. I want everything as clean and comfortable as possible for when Keith is not feeling as well as he is right now.
I am so proud of my husband. Not because he doesn't express fear -- because that isn't true and would be stupid, to say the least. Fear is normal and needs to be expressed. And not because he never gets grumpy or anxious. That would mean he isn't behaving normally.
I am proud because he does express his fear, gets irritable at times, feels anxious about the future. I am proud of him because he expresses these things in his writing, his conversations, and in his moments alone with me. There is no phony "macho" thing with Keith. I don't have to guess how he feels about something. I am able to be myself around him as well, because he remains true to himself. He is not pretending to be fearless or stoic. He allows us to share his fears and anxieties, along with his sense of humor, his warmth and his enthusiasm for life.
It's so nice to be married to a "real man." One who knows that communication is the key to a good relationship. It is through that communication that we have weathered some very hard times in the past. This is now (I hope) the hardest time of all for us. It is through sharing and talking that we will get through this together. For 27 years we have stood by each other. It is almost a miracle in our generation to accomplish this and a great deal of the credit goes to Keith for his ability to stick through a difficult situation and say the things that need to be said.
I am grateful that he never shuts me out and that he allows me to try to help as best I can. It may seem strange to say about a man I've lived with for so long, but I am honored by the trust he places in me every day. It's a rare gift. One I treasure.
Friday, October 12, 2007
Amazed and Amused
I am always delighted when Keith finds these little funny details in life. It is that observation of the absurd that makes living with him so great. He notices the ridiculous and the sublime. He appreciates the beauty of living and the delicious silliness of it all.
He will be getting dressed and turn to me and become "Borg Keith." Fiction suddenly starts to feel like reality when your body starts to sprout tubes and wires. It's all serious. It's all important. And, it's all just a little bit bizarre.
Machines surround him with unseen rays bombarding his body -- targeting the evil cancer cells. Didn't this happen to Bruce Willis in 12 Monkeys? Should we just tattoo a bar code on and get it over with?
The chemo pump clicks and buzzes for a few seconds. And I thought cell phones were intrusive! I find myself afraid to hug my husband because I might jostle some piece of technology. I think back to all those days when I became exasperated with Keith and told him "it's like you are glued to the computer!" Again, fiction becomes reality. The computer really is glued to him now. Can I take it back? I want a hug. I want to snuggle in bed and watch silly television shows.
Modern medicine is very efficient, very scientific, very logical. It is also very cold. It lacks the warmth of the human heart and the breath of kindness. Cancer abstracts talk about cost effectiveness and trials and mortality and morbidity. Doctors try to be professional and detached. Studies talk about drugs and methods and formulas and protocols.
But, during all this efficient, modern treatment there needs to be something more. Something enlightening and spiritual if you will. This patient is not a patient. He is a man. A husband. A father. A grandfather. A co-worker. A nephew. A cousin. A son. He is gentle, but sometimes impatient. He procrastinates over yard work and house repairs, but will fix a computer in a flash. He will take a drive across the state on a whim and sit in the sand and build castles with his children. He will get up in the wee hours of the morning after working late at night to pick up a daughter from the airport. He will pile unopened mail on his dresser, then wonder what happened to the debit card he was waiting for. He will tell me I'm beautiful when I feel like a wreck. He will mean it, too.
Humanity cannot be forgotten in the rush to heal. Love is healing too. Caring, compassion and empathy should be the cornerstones of medicine. The will to live is powerful. It is spurred by the amount of love and support we feel from those around us.
My husband. My best friend. My lover. My companion.
Cancer does not define you. Love defines you. You are surrounded by it -- enveloped in a swirling cloud of affection. It is also a powerful a medicine in your arsenal against this disease.
Tuesday, October 9, 2007
Emotions
Saddness is an odd feeling since at times it is almost an absence of feeling. Fighting tears back at one moment, then wishing you could get the tears out in another moment. Feeling that all you want to do is hide and sleep -- blessed, peaceful, dreamless sleep. Curling up in bed is like a sheltering womb. But it is an illusion. The cause of all the saddness does not fade -- does not disappear.
The worst of it all is that my role in all this is to provide support and love, but the saddness robs me of the ability to tackle that role. There have been hours when exhaustion just sweeps over me, leaving me feeling irritable, and even more terrible -- closed off emotionally.
I think this depression is easing up a bit. I will try to push it back and throw it aside so that I can return to the task at hand -- Keith's life.
Saturday, October 6, 2007
Random thoughts
It's so hard to even think of Keith being sick -- he seems fine on the surface. It all seems slightly unreal. The edges of life are fuzzy and blurred like a dream. We keep waiting to wake up.
I feel very proud of how he has managed the first steps of treatment. Placing tubes and objects must add to the dream-like quality of his life right now. He shows real courage and acceptance, whether he feels it or not.
Courage, it seems, is about actions, not feelings. Fear is always a part of this. But what should we do with that fear? Do we nurture it? Do we dwell on it? Do we succumb to it?
Keith has decided that it is important to face his fears and move forward as an example to his children. His strength in the face of this challenge demonstrates his values and the depth of his love for his daughters. They draw their strength from him.
One way to conquer fear, at least to some degree, is to find time for laughter. Humor is a healthy response that makes both the body and the mind feel better. Keith's writing continues to have his dry sense of humor in spite of the underlining seriousness of the situation.
Smiles help ease the underlying fear. It helps us to stay grounded in the here and now.
This morning we watched our granddaughter Liz stacking coffee creamers -- making houses and castles out of little containers. How can anyone not smile while a child discovers such tiny joys.
And, after all, life is funny at times...
We look for something for an hour only to discover it is right in front of us.
"Where are my glasses?" "On your head, silly!"
The call at night from the son who says his car won't start, he'll need to call a tow truck. (out of gas!).
Walking through the department store past lingerie and Liz yells out for all to hear "Look, grandma. Boobies."
Me mispronouncing the word "stoic" as "stoyk." (Keith found that very funny.)
Lying in bed on a Sunday morning, enjoying the quiet and then hearing several bumps and an "ow" and we both say, "Kim's up."
Me losing every mini-challenge on my new Wii game and still beating the kids -- they still can't figure that one out.
Keith calling me to "say hello" and I say "you bought ...." I'm right, of course. And he says "how do you do that?" -- we both do it actually, it just comes from being married for a long time.
I love those moments. It is when we laugh about something together that I feel most connected.
I also find myself thinking a lot about the years we've spent together -- remembering hardships and triumphs. I treasure our spontaneous trips whether they worked out or not. I treasure sharing the births of our children, even if Keith did take some pictures of me in some very embarrassing positions. I even treasure the arguments, because out of them we always gained a better understanding of each other.
Maybe we both like roller coasters so much because it reminds us of our life together. A series of ups and down, loops and turns -- thrilling, exciting, heart-pounding climbs and dives and when it stops you want to go again.
Thursday, October 4, 2007
Reflections and contemplations
I have hope for the future -- Keith is strong, young, healthy in every other way except the cancer. He is a good "candidate" (as the doctors say) for treatment. But, it's still all risky. Can't help but feel that every moment should belong to us, just in case.
I understood Keith completely when we were in the hospital and contemplated (for a moment or two at least) the option of just going away together -- traveling and enjoying life for as long as possible. But doing that is giving up and admitting defeat. We're not at that point. Hope is paramount -- hope is tangible -- survival is a possibilty -- it is within reach, so we will reach for it.
I hate seeing Keith have to go through all this. It is his struggle -- one that he ultimately faces alone, no matter what kind of "support" we give him. No one can really share that interior life that is uniquely our own. The voices and visions, the memories and moments, shift and change and make up our dreams and thoughts. I think of James Joyce and how he takes us into that interior life and how difficult it is to fathom, even when it is put into words for us. Each of us is connected, but yet we are ultimately alone -- each like a small universe -- isolated, but part of an infinite and overpowering whole that we don't really grasp.
Fear, love, hate, anger, joy, tenderness, despair, acceptance, affection, uncertainty, hope -- the emotions we all feel flicker from moment to moment and never settle into place. Should I still tell Keith to pick his clothes up off the floor, or take out the trash, or turn off the television? Do we continue with the mundane? Do any of these things matter? Does it matter that these things don't really matter? Don't those simple actions ground us in the here and now of our lives? Doesn't the trash still have to go out even when cancer alters our lives?
I guess I will continue with the mundane, at least just a bit. But, I also find myself looking up at the night sky, or into the sleeping face of my husband, and think -- life is a series of moments like these, precious, fleeting, and desperately sweet. The universe within and without is a magnificent mystery. By capturing those moments we also capture the meaning of life. There is no justice or fairness in life and death. There is only the mystery. There is only the truth. Love is all there is. It has to be enough.
Wednesday, October 3, 2007
First steps
I'm glad I went to the hospital for Keith's first procedure -- I think it helped us both. I was able to meet the doctors and have the "port" and feeding tube explained. Laying on a hospital bed waiting for doctors and nurses to do something is unnerving if you don't have someone with you to provide some distraction.
Just someone to talk to -- that's so very important. Keith needs it, of course, but so does the entire family. We talk of big things, like cancer, but also little things like bills and shopping, errands and work.
We talk about odds -- what they mean -- what they might mean. We weigh and balance the odds of survival. The odds of treatment vs no treatment. The odds of getting better later against wellness now. Life becomes a game of craps. How ironic is that? Hasn't it always been, but we just don't usually pay attention?
This past few weeks have put love and marriage into focus. This truly is what marriage is all about -- being with someone heart and soul. It is about saying the words I Love You and meaning them with every fiber of your being. It's about finally understanding the depth of your marriage vows and that how we manage to hold on to each other through the most difficult times of our lives is what those vows were really all about.
If cancer can bring a gift along with the fear and sadness -- it is that. Love at its deepest and most meaningful. I understand now, at the very core of my heart, that the man facing this terrible challenge is not just a part of my life -- he is my life.