Monday, September 29, 2008

Nesting

Kevin says I'm nesting.  Having been away from home for 2 months and working all of last year, our home needed a major organizational make-over.  Since we've been home I've been going through closets and cupboards.  My donation pile is getting larger and our garbage can fills up 3 days before pickup.  It feels great to get rid of excess or items I've saved for sentimental reasons and realize some are not so sentimental after all.  I seriously miss my basement in Connecticut though.  I had nice heavy shelves where my tubs of winter blankets, holiday, camping gear, and kids keepsakes were kept.  In California these items end up in the overhead storage over our cars, in the attic, unreachable, or in my closet.  It's a bit more difficult in our home since we have very few usable storage cabinets.  I'm working hard to maximize our space.  It's been a fun project and will take me awhile longer.  

Kevin has been doing well.  He is sleeping better now and without needing to take a sleeping pill.  I have to keep reminding him that he just had major surgery and not to try and do too much.  When he does, he is more tired the following day.  He still shouldn't lift more than 5 lbs. and he's lucked out in gardening.  He can't turn up dirt, ever, because of the aspergillus.  I've always been the gardener, but he use to help me with the heavy stuff.  Rebecca & Caitlin helped me clean up the yard on Saturday.  It looks much better.  

Kevin and I leave again today, but only overnight.  He has an appointment this afternoon with Dr. Schrier (expert for amyloidosis) at Stanford to discuss the plan for treating amyloidosis.  Then Tuesday morning is the routine heart biopsy, chest x-ray, doctor visit and infusion.  

We have so enjoyed being home.  We're getting ready for the OPEN HOUSE next Sunday night. Hope many of you can make it.  And three weeks after that Rebecca will be married. Three children married in 6 months and Kevin's health issues and we are all doing well.  A testiment that God doesn't give us more than we can handle.  He has carried us the entire way.  We feel very blessed.  

Kevin will probably write the outcome of today's appointment soon.  

  

Thursday, September 25, 2008

Good News

A few days before I received my heart transplant I attended my first transplant support group at Kaiser and met a woman named Debbie. She and I share the same diagnosis, systemic (AL) Amyloidosis. (She was diagnosed about two weeks after I was). She was admitted on Monday of this week and upgraded on the transplant list. She got a call tonight to be transferred to Stanford for a heart transplant. We are so excited for her and pray that she will do well in her surgery and all that follows.

Kevin

Wednesday, September 24, 2008

Open House

I forgot to mention the time of the open house.
Sunday, October 5th, 2008
6:00 - 8:00 P.M.

If you would like directions, please send me a comment with your email and I will send you directions. (I won't publish any of these comments)

Thanks

Kevin

Tuesday, September 23, 2008

There's no place like home


Finally coming home was wonderful. It took a few days to adjust, but I am so glad to be here with Barbie, Rebecca and Caitlin. It has been busy trying to clean up the loose ends that have built up over two months, but I enjoy it thoroughly. I just have to careful that I don't over-exert myself. I really missed my backyard. Those of you who have been to New England will remember that it is one giant forest. Trees everywhere, whose canopy rises 40 to 60 feet above the ground. Coming back to California, I wanted to be somewhere where I could look out of my window and see trees. Barbie found the perfect spot. The trees here, however, are quite different. The live oaks are shorter, rising 20 - 30 feet, and generally stand alone or in sparse clumps. They don't like to be crowded. They are beautiful in there own way. Since the branches don't blend with the other trees, you can appreciate them in their fullness. The ground-cover is the opposite of New England, In Connecticut, the ground cover remained green from May to October, while here, in California, the green begins in late fall and lasts till May. I love the contrast.
I have always been enamored with trees, This may stem from the fact that a tree saved my life when I was seven. I almost drowned in a river, only to pull myself out by grabbing onto a submerged root of a tree, an oak tree. That was the first time that my life was saved, but that is another story (someday, I may share it). Since then, for me, trees symbolize life. I have spent a lot of time in the last few days just sitting and admiring the trees. They are beautiful. When I was in the hospital in Santa Clara waiting for my new heart, I was not allowed to leave the cardiac ward at all. twice a day I would stand by the window looking out at the corner of Homestead Ave. and Lawrence Expy. The only glimpse of greenery was the neighbors' yards and Kaiser's landscaping. I really missed being outside.

Barbie and I try daily to keep our commitment to each other. Real life is rapidly encroaching, as is expected, but we make sure we don't lose our moments together. Physically, I feel wonderful. In our daily walks, my pace and endurance are improving. I am ready for the next phase of my treatment.

It is impossible to adequately thank all of the many friends and friends of friends that have remembered us in their thoughts and prayers. Your combined faith has wrought miracles in our lives. Barbie and I wanted to open our home on October 5th, 2008 and invite all of those who would like to visit. We realize that many are far away, but if you live in the vicinity, we'd love to see you.

We live in Lincoln, CA, just off Twelve Bridges near Sierra College Blvd. at 1720 Bella Cir.
Our phone number is 916-543-3299

Every once in a while it is valuable to stop and reflect upon how every person you meet, every sincere human contact, changes you. I have known thousands of people in my life. Each one has their own voice and their own story. Each one has something to teach me, as long as I am open to learn.

Kevin

Saturday, September 20, 2008

Back to Life at Home

We have been home now for a few days.  It has been wonderful in every way.  The girls are glad to have us home and take care of things that were left up to them for so long.  Rebecca no longer needs to pick up or drop off Caitlin at all her activities.  That frees up her time so she can focus on wedding details and Corey.  When we left Santa Clara we got home in time to pick up Caitlin from piano lessons and listen to her play for 30 minutes.  What a treat for both Kevin and I.  And then by the next day I was her chauffeur and enjoyed visiting with her on our way to the next destination. As far as Rebecca and I, we spent all Thursday and Friday working on announcements, and all that it entails.  They are ready to be mailed.  We also worked on details for the bridesmaids.  Everything is coming together.  In between all this I found some time to go through piles of papers, reorganize areas (still lots more to do there), and play in the yard.  I saved a few zucchini from 'overgrown zucchini heaven', pulled a few weeds (many more there as well), fixed some broken drips and tidied up a little.  Today I spent nice quality time with Parker.  I bathed him in the backyard and brushed him well.  He and I had a wonderful dog bonding moment.  He smells so good and his coat looks amazing.  I bought him a new bed and a new dog toy.  His bed smelled worse than he did. 

Kevin and I have been walking 3 miles everyday.  He wanted to walk my running route yesterday with lots of hills.  He did fine, but his calves didn't.  He can feel his muscles work so hard as they try to build.  He is doing wonderful.  I know now why they have heart patients stay in the area for a month or so.  It's to watch for rejection, but also to force them to rest. Kevin wants to do so much, but knows when he needs to stop and rest.   He is still limited and I know that it is a little frustrating to him that I need to do things that he can't yet or ever do.  I really don't mind.  I've have a new outlook on life.  I like where I am right now and hope that I don't go back to my "hurry and get it done" phase.  I'm discovering more about enjoying the moment.  Sounds cliche, I know, but I don't know any other way of describing it.  Our life together has changed too, and we love that.  

Tomorrow we will celebrate Rebecca's 20th birthday - dinner, cakes, and presents in the making.  We will have a relaxing, calm, birthday celebration.

Barbie  

Wednesday, September 17, 2008

On our way

We just got the call from the clinic. My biopsy was NER (No evidence of rejection) and all the labs look great, we're leaving now and going home for good!!

Kevin

Going Home

We have waited for this day for so long. We left for Rochester, MN on July 15th and haven’t really been home since. We are so excited to finally be back with Rebecca and Caitlin and have our lives return to some semblance of normalcy. However, we do return with some trepidation. This time that Barbie and I have spent together has been extraordinary. We have been with each other all of the time, day and night. Some might think that this would drive us crazy and we would be craving our ‘own’ space. But it has been just the opposite. This is because, after 26 years of marriage, during this experience, our roles have changed so drastically. I have been dependant on Barbie for everything and this will slowly begin to change.

But we don’t want to go back to where we were. There have been some truly profound moments that have brought us to closeness reminiscent of courtship. On these occasions of quiet intimacy, the emotional range has vacillated from despair to exhilaration. These experiences have changed our relationship and each of us personally. The fear is that as we return home and to our responsibilities there that we will revert back to old habits. We don’t want to lose what we have learned.

Barbie asked me the other day, “Will you still spend time with me?” I knew exactly what she meant. Like so many married couples our lives were often controlled by our responsibilities and our leisure time often wasn’t passed in common interests. It is like we were dancing to different tunes.

The song has changed; and now we dance together. It will require a constant effort to maintain the harmony of that shared song to keep us in step with each other. We still have much to do. Soon we start treatment for amyloidosis; that is a big unknown. At some point we will both go back to work. But it is my commitment to Barbie to never lose what we have learned or fall back on complacent habits. I must always hear her song and avoid stepping on her toes.

We will find new ways to be together and make them habits in our lives. To do otherwise would diminish the magnitude and the memory of these powerful moments that we have mutually experienced.

Kevin

By his side

I am sitting in our hotel room waiting for the results of the biopsy and the decision to let us go home or not.  The past week my thoughts have reflected back to the beginning when all this started.  At the time of diagnosis, many articles we read mentioned fatal and not a candidate for heart transplant.  Even with great faith, a little part of me wondered if this was Kevin's time to leave this earth.  As we have moved forward to where we are now, many miracles have occurred.  The first and foremost is that Dr. Edwards at Mayo accepted Kevin as a candidate based on a 'feeling'.  Kevin was just as sick as many before him who were sent home.  The success rate for AL amyloidosis had been dismal in the past, even 2 years ago. Because of Dr. Edwards 'feeling' he spoke to the Stanford Team and they decided to move forward.  And with the help of the Kaiser Transplant Team, Kevin was listed at Stanford as well.  It was not his time to go.  For this I am eternally grateful.

So now we are in recovery mode with the anxiety of moving forward to treat the amyloidosis.  We did get an appointment with hematology at Stanford.  Again, we are grateful for the fast moving process to treat him.  I need him here for as long as possible; he calms my soul and comforts my worries. 

I have been thinking about the adjustment we will have going home.  We have been by each other's side during this entire process with the exception of two receptions.  When we go home and back to a routine, we won't be together all day.  I suppose we will adjust.  I let him start driving yesterday; it was strange to hand him over the keys.  It sort of felt like I was letting go of some of my freedom, but having been a passenger for 2 months, Kevin now has more patience for passengers and I for the driver.  I have left him at the hospital or the hotel room to run some errands, but he has never left me.  The moment we get home and he leaves to run an errand, I will feel the loss of his companionship.  This may sound very strange to many of you, but my sensitivity level has heightened.  I've taken care of him for so long now, I will worry when he is not with me, not a lot, but to some small degree.  As he gains more independence, I lose a little of him.  But to leave on a happy note, the fact that I have been able to be with him is a blessing and has made me love him more.

Barbie

Tuesday, September 16, 2008

Take Aim Tuesday

Tuesday visits are all pointed at Kevin's heart.  
It starts with:
  1. Biopsy and Blood draw
  2. chest x-ray
  3. clinic visit w/echo
And then we wait...tomorrow they will call with the results of the biopsy and his labs.  This next call is crucial because it determines when we get to GO HOME!!  

Right now Kevin is also receiving his once a week infusion of Dacluzimab.  This is his second, but I can't remember how many more he needs.   If we get to go home we'll come back next Tuesday for a clinic visit, biopsy the following Tuesday.  

Gotta go - Kevin just text (is there a past tense, texted?) me and he is ready to be picked up.  Write more later.

Barbie

Monday, September 15, 2008

Next Phase

I continue to recover well and feel great. Food now tastes like it is supposed to and I can't get enough, but I still haven't put any weight back. (the healing process chews up a lot of calories as I rebuild the muscle mass that I have lost.) But I don't want to fall back on my 'old' bad eating habits, so I am loading up on fresh fruits and vegetables. (mushrooms and green peppers on my pizza, just kidding).

Now my focus, now, is turning to the treatment of the amyloidosis. That is what got me here in the first place. To date, I have received no treatment for it because the heart took precedence.

I spoke today with Dr Witteles about a referral to Stanford to discuss my options. Dr Witteles is a Transplant Cardiologist at Stanford and was involved in the decision to get me on the transplant list there. He has a special interest in amyloidosis, as they are starting a program to treat amyloidosis here at Stanford. I am their first transplant in decades. (AL Amyloidosis, Leo had a transplant 4 years ago for AA Amyloidosis).

Dr Witteles set up an appointment for me to see Dr Stanley L. Schrier, Professor (Emeritus) in the Hematology/Oncology department at Stanford who is the expert there on the treatment of amyloidosis. In that visit we will discuss the timing and approach to the treatment plan. It could be to start on chemotherapy soon (when I am sufficiently recovered from the transplant) to control the amylodosis with the idea then to do the stem-cell transplant at a later date; or to use only chemotherapy, and if that reduces my serum kappa free light chains (the full name of those nasty proteins 'gumming' up my system) to a normal level, that may be all that I need. That would be nice.

I am so fortunate to have so many great doctors helping me to get better. I trust them with my life.

Life is good.

Kevin

Sunday, September 14, 2008

Biopsy - NER

What does NER mean?  Well, if you have had a transplant, it's great news.  Kevin's biopsy showed NO EVIDENCE OF REJECTION!  This is the first time for this result.  The previous 2 right after transplant both showed small signs of rejection which they explained is normal.  Kevin has been feeling so much better.  He is sleeping better, eating better, and has much more strength.  We went on a 2 miles walk yesterday and he felt great.  He can feel the muscles working hard in his legs as he tries to regain muscle mass. 

Everyday I am amazed at his recovery.   He's had his new heart for only 4 weeks and with the exception of a few side effects of the drugs, he feels better and better.  

Soon we will be home and back to some normalcy:)

Thursday, September 11, 2008

Legal Alien (just for fun)

I metaphoran alien recently and he entered into my life. I’ll call him Jerome. At first I was anxious and then had a change of heart. He is, however, a legal alien. Unfortunately, once the IMS (Immune system) discovered him, they immediately set out to reject and deport him. Small squadrons of killer cells began to set upon him, but he was protected by his ‘Green Card’. Actually, multiple green cards from different agencies; Gengraf, Cellcept, Prednisone and Daclizumab. These were all administered, by me, under one umbrella agency, not dissimilar to homeland security. Fortuitously, the agents of these killer cells were repelled back to their cavernous marrows, and with luck, will remain dormant, as sleeper cells.

He made his home in the heartland and began work immediately. He works fulltime, now, and specializes in fluid and energy distribution. He works with such regularity and precision that he is often compared to the ticking of a clock, earning him the nickname, ‘Jerome, Jerome, the metronome’. (See Gattaca)

I hope to see him naturalized soon, and as a citizen, I can stand with him, hand over my heart, and pledge allegiance to this union. I sense that his tireless efforts will continue. I guess what I have learned is that we are all strangers on this borrowed land. Yet, as I serve to protect him and he labors to help me, alone we would remain alienated, but together we can stand free.

Kevin

The Heart Team - they all have BIG hearts!


The Transplant Team@Kaiser/Santa Clara
Sue Murray, RN - Nurse Coordinator
Flavio Epstein, Phd - Psychologist
Janet Stevenson (on phone) - Social Worker
Kevin
Sharlene Junio, RN
(missing) Marilyn Riggs - RN



Kevin w/ Dr. Weisshaar



Kevin w/ Dr. Nishime
(missing Dr. Parekh)

This team has given Kevin the best care. They are thorough, loving and the best part is that they are HUGGERS! We would not want to be anywhere else. They have made this part of the journey much easier than we had imagined. Thank you everyone!

Barbie

Wednesday, September 10, 2008

New blood test - Allomap

Yesterday, Dr Nishime spoke to the Kaiser transplant support group about a new blood test that will replace the need for a heart biopsy to determine rejection. The test is called Allomap and was developed by Xdx, Inc. of Brisbane CA. The science behind it is quite interesting.

When the body begins to actively reject the heart, the process begins in the cellular immune system. These white cells activate by switching on genes that make specific proteins. These proteins then direct the cells to begin their killer and rejection behavior. Currently, the only way to observe this is to look at the end result, after the damage is done. This is diagnosed with a heart biopsy. Under the microscope, infiltration of the white cells into the heart muscle indicates the degree of rejection. Allomap is like gathering intelligence on the ground forces amassing prior to the attack.

What Allomap does is to measure the activation of the genes that start this process. When a gene is activated, the first step is to make a RNA copy of that gene from our DNA. The RNA is then transcribed and produces the desired protein. Allomap measures the level of the RNA reflecting the gene activity in that cell.

All that is needed is a small sample of blood. That's the easy part. There are only minute amounts of RNA in the sample, truly insufficient to measure directly. In order to have enough RNA to measure, millions of copies must be made first. The problem is, RNA is very fragile. It would be like copying wet tissue paper by sending it through a document feeder. It would shred on the first pass. To make copies, a stronger molecule is needed, so the RNA is first converted (translated) into DNA. In the conversion and copying process, short sequences of DNA specific to the genes being studied are used to bracket and copy only a cropped version of the gene; in the same way you would crop a photograph before printing it.

Then the copier is turned on and left running. The production is exponential, eventually making millions of copies of the turned-on gene. Now it can be measured. The process is called PCR, (Polymerase Chain Reaction). Allomap measure 11 genes of interest and 9 control genes.

At this point, the amount of data generated is huge, too much to be useful for interpretation. This is where the big computers come in. Since the process is proprietary, I can only imagine that some complex algorhythm using a type of artificial intelligence distills all of the data down to a single number, not unlike how an actuary works. They give you the bottom line.

In studies comparing Allomap to the 'Gold Standard' heart biopsy, the correlation is amazingly good, better than 99% Sensitivity. This means that it misses rejection in less than 10 out of 1000 cases.

Once again, I find myself very fortunate in that this new lab test was FDA approved for clinical use one week after I had my heart transplant, allowing me to be part of the first group to benefit from it. Instead of having 13 heart biopsies this year, I will only have eight

Life is good.

Kevin

Tuesday, September 9, 2008

I miss my garden

I left our home right as our tomatoes, cucumbers, and zucchini were harvesting. I had great plans to make sauce from the tomatoes and freeze for future meals. Last year I planted lemon cucumbers and thought they had too many seeds so I chose a simple cucumber this year. We haven't gotten to eat one. I was planning on making the cucumber salad with vinegar, sugar and red onions. Didn't happen. My basil probably went to seed and my peppers are possibly dried out. I have no idea if our yellow squash even grew. While my mom was at our home, she checked daily and watered as necessary. We have a drip system, but Sacramento summers can wreck havoc on a garden with temperatures reaching over 100 degrees for a 5-10 day stretch. My mom and I decided it was time she needed to go home to my dad so she flew home the weekend of Sam & Michelle's Utah reception (since Utah is where she lives). The girls have been taking care of the house and their own busy lives. As much as they would love to have some free time, I'm not sure the garden in on the top of the list when they do. They have enough to keep up with.
My flower garden was not in great shape when I left. I had kept it so beautiful and lush for Alexandria and Jeremy's reception, but when that ended my time was divided with our next wedding (travel arrangements and such), Kevin's health, church assignments and work. My flower garden took a back seat. I think when I come home one of the first things I will do is get my hands dirty.

I also miss our dog, Parker. I think of him home all day, alone. I know he is a dog and can handle that, but I will welcome his company when I start working in the garden again. He is great company. He will lie next to me on the grass, two paws crossed over his little stuffed toy of two years and glance at me every now and again, while still chewing. It's the cutest thing.
I miss cooking in my kitchen. I'm sure taking inventory and restocking will be high on the list as well.
I miss my friends at work. They are a great group to work with. Hi everyone.
And oh, how we miss our bed. We had just bought a new mattress for my birthday in May.
I didn't intend for this to be an 'I miss' blog, but many times I have intended to write one thing and said another.
  
  Leo, Kevin & Debbie
Today we went to the transplant support group at Kaiser - Santa Clara. I finally met Debbie Douglas & her husband & great friends. Some of you may have noticed her comments to Kevin and I. She has also been diagnosed with Amyloidosis. It was frightening to her, but after having met Kevin, SOME of her anxiety has withdrawn. It all can be very scary. We all enjoyed some really great hugs. Of all the transplant patients, there are only 3 with Amyloidosis: Leo - 4 years out (hereditary amyloid), Kevin - 24 days out (AL systemic), and Debbie - waiting at home (AL systemic). They are a great support to each other. We talked to Dr. Nishime today and the plan is that Kevin won't meet with an Oncologist to start amyloid treatment until after the 3 month mark of the transplant.  He is anxious to start discussion and have a plan. We'll have to wait a little longer.
Everyday I wake up and wonder what the day will bring and what our future life will bring. I am not worried, only waiting for direction.
Big hugs to all of you,
Barbie
P.S. not bad for a picture (above) taken from my cell phone.

Monday, September 8, 2008

Caitlin's Original Song, "Waiting"




This is the song Caitlin wrote for Kevin's birthday.

Sunday, September 7, 2008

Wonderful Weekend

What a great weekend it has been. Caitlin, Rebecca and Corey came and stayed with us here in Sunnyvale. We have been away from each other for too long. They arrived on Friday and we went out to In and Out Burger, our favorite hamburger place. Saturday we spent the day at Great America (an amusement park). They had a great time on the rides. (Of course, I did not go on any rides, as much as I wanted to, I do know better) We then all went to California Pizza Kitchen. (I was craving the smashed pea soup) Life is better now that my taste buds are willing to cooperate.
I have been feeling much better and getting my strength back. Today we went for a two-mile walk. I do need to build up my endurance.
I had mentioned that Caitlin wrote me a song for my birthday. Her piano teacher helped her to record it, and another piano piece, so that I could hear them any time. With Barbie's new-found blog-editing skills, I believe she will likely post it on the site.
We are so proud of Caitlin. She has become so independent in our absence. She is very responsible and remains strong. We are also so grateful to Rebecca for being there for her and helping her while we are gone.

We can't wait to go home.

Kevin

Thursday, September 4, 2008

My Dad

I've been thinking a lot about my Dad lately. My Mom came to stay with me last weekend while Barbie was in Utah and we had an opportunity to reminisce about him. My Dad died almost four years ago. When we moved back to California he was ill, but I thought we would have more time with him. It was only three months later when he passed away. My Dad died of Multiple Myeloma, which is interesting in that it is a cancer of the same cell-type that causes Amyloidosis. However, they are not related or of a heritable type.

California state law requires that all physicians take 12 hours of CME in end-of-life studies and palliative care. When I did my training, the course director asked all of us how we would like to die. Most people wanted a quick and painless death after a long and useful life. Unfortunately, only 10% die that way. When she asked, "Who would like to die of cancer?" I was the only person who raised his hand. She was puzzled and asked why. I was remembering my Dad and thought to myself, 'He died well' He was lucid and in control until the end. I explained this and she agreed. The rest of the class was consigned to die like most people do, after a long chronic illness takes it's toll over many years. This may seem like a strange discussion, but it is the reality that we will all come to.

When I began work at Kaiser, I looked at my Dad's x-rays and was shocked to see how much the cancer had invaded his entire skeleton. I thought, "He must be in terrible pain." And yet, he never complained. Even then, his focus was not on himself. The center of his life was always on his family. He never spent one night in the hospital. He died quietly at home surrounded by his family. Two days prior, I spoke to him and promised him that we would take care of Mom. The last words he ever said to me were "Thank You".

My parents gave me two great gifts in my lifetime. First was a strong work ethic coupled with the value of personal responsibility. The second was that they trusted me to make my own decisions, which included the risk of failing. For a parent, this is a hard balance to reach.
In my years counseling with and observing parents, I have found that many fall into the two extremes of being too rigid or too lenient. They either micromanage their children's everyday activities, allowing them controlled successes, but without real risk, or they aim to be just their friend who would never impose on their personal freedom. Both approaches are fraught with problems and based in fear. The middle ground is harder to maintain. Give them guidelines to live by, supported by example, and then let them decide, without subtle threat or coercion.

This gift from my parents was so valuable to me, that even when I left home, I would not do anything to break their trust. No child feels freer than when they are trusted by their parents.

As I spoke to my Mom about this, I realized something I had not noticed before. My parents have nine children and all of us have chosen to be productive and honorable in our lives. What I find even more interesting is that this has carried on into the next generation. All of my parent's 34 grandchildren continue to follow this pattern. I think of Barbie's and mine own children and how they have always chosen well. They have always brought us only joy.

It is no accident that I was born of noble parents. But with every true gift comes responsibility.

I have been given a 'second lease' on life. The memory of my father reminds me that I must continue in this life, as before, and never do anything that would lose the trust of my parents; the most valuable gift I ever got from them.

Kevin

Slide show added

I've been needing something new to do in our humble hotel room and with the help of my sister-in-law, Amy, I added a slide show to our blog.  I've been wanting to spruce it up a little but hadn't really had time to think about it - my focus has been on Kevin.  

Today he has felt much better than the past few days.  The nurses warned us today that as he comes down on lower doses of Prednisone, he will feel even worse.  The next two weeks could be his toughest.  It's funny to think that the actual surgery itself was the easy part. 

The girls are coming up this weekend (and Corey).  We are excited to see them all.  I think we are sending them to Great America for the day.  It's about a mile from us.  We also had a wonderful visit yesterday from MaryJane Smith, Gloriana and her husband, Josh.  She is in California to attend Murphy's wedding (MaryJane's son).  These are great friends from Connecticut.  We've enjoyed every visit we have had.  Last Monday we were to receive a visit from Kevin's sister, Lisa and from a Kaiser partner, Depak Chabra.  Kevin had to call them both and ask them to come another time, since he felt so awful.  Sorry - he didn't like doing that.

Thank you to all for your support in this experience.  We have grown from your thoughts as well.  

Barbie