T minus ?

In between the appointments and procedures, we have found time to explore Rochester. It's a nice little/big town. The entire city revolves around the many Mayo Clinic buildings. It seems the downtown area is made up mainly of Clinic buildings, hotels/motels, restaurants and parking structures. I'm including a few photos so you can see.


Methodist Hospital -- Karl receives his heparin injections and has diagnostic testing done here.


Gonda Building -- Absolutely beautiful. Marble floors and walls, ornate woodwork. All Mayo buildings have lots of artwork and music in the belief that it helps the healing process. Most of Karl's physician consultations are in this building.



Dale Chihuly chandeliers in the Gonda Building -- This sculpture (all 13pieces) weighs 6000 lbs, spans 45 feet, and comprises 1375 pieces of glass. http://www.mayoclinicproceedings.com/pdf%2F7611%2F7611amc.pdf


St. Mary's Hospital -- This photo doesn't do any justice to the size of this facility. This is where the surgery will be performed.

We are blessed enough to be in a very nice part of town, about 3 blocks northeast of the main Mayo buildings and across the parking lot from the Mayo Civic Center. Good housing, we have learned, is difficult to come by in Rochester. There are plenty of extended stay hotels, but they offer little more than a microwave and refrigerator in a slightly larger room. A few weeks ago I had searched for three days. I was becoming pretty frustrated. I waited a week, prayed for help and then, bingo, found the place in which we are now staying which has 2 bedrooms and 2 baths. We were informed yesterday that we received the last available apartment in this building. There is now a waiting list. Again, I have to bear witness. Praise the Lord!


This is the view of the Mayo Civic Center from our suite.


This is the view of downtown Rochester from our suite.

Of course the highlight of Rochester, according to Karl, lies just outside of town. It's the ear of corn water tower. We aren't sure why it's an ear of corn. The Mayo High School mascot is the Spartan. And I always thought Iowa reigned as the corn capital. Regardless, he thinks every town should have some kind of "theme" water tower. You know...Adrian should have a maple leaf-shaped water tower, Tecumseh should have a...okay, we couldn't think of anything. But here's a picture just in case you have a difficult time believing it. I know we did at first!



Monday was a busy and tiring day for Karl, but the procedure to put in his Inter-Vena Cava (IVC) filter went off without a hitch. At 8 a.m. he had an MRI at Rochester Methodist Hospital and at 10:15 a.m. he reported to St. Mary's for the IVC filter "installation." We got back to our suite around 4 p.m. local time and Karl napped until the grogginess of the ativan, versed and phentenol wore off. We then had a nice grilled steak dinner with fresh swiss chard that I brought from my garden along with new potatoes and peas. He really enjoyed it and ate well. After he receivied a few "best wishes" phone calls, we headed out to Walmart to see if we could cause some trouble there.

On July 15th we're not sure what will happen. The itinerary calls for a 10 a.m. heparin injection at Rochester Methodist, a 1 p.m. meeting with Dr. Yaszemski at the Gonda Building and a 2:30 meeting with Dr. Sawyer, a general surgeon, at St. Mary's. But there's nothing scheduled after that. We were told a month ago there would be a pre-surgical procedure and that he'd be admitted in the evening so they could begin surgery first thing July 16. Because we think he's going to have a procedure, Karl won't eat anything after midnight, which means he's going to be pretty hungry. But, it's better to be safe than sorry.

I'll keep you posted.

Peace,

Kerry

If you make the Most High your dwelling --
even the Lord, who is my refuge --
then no harm will befall you,
no disaster will come near your tent.
For he will command his angels concerning you
to guard you in all your ways;
they will lift you up in their hands,
so that you will not strike your foot against a stone.

Psalm 91:9-12

Into the storm

Yesterday our drive to Minnesota seemed pretty uneventful. Karl and Mom took turns napping until I hit a bump or a song was louder than the one it succeeded. That is, until we hit just west of Camp Douglas National Guard Base on I-90/94 in Wisconsin. (It must be noted here that we stopped at a gas station at the Camp Douglas exit where Mom bought “squeaky fresh” cheese curds. We wondered what “squeaky fresh” meant, until we had a few curds and it actually squeaked against our teeth. They are yummy and I highly recommend them!)

As we traveled on, the sky grew cloudier and darker. Finally as we took the I-90 fork to the south you could see the sky was turning a strange greenish color -- the color you see when the weather is severe and usually packs damaging winds, hail, torrents of rain and even tornadoes. I kept saying, “We’re heading right into it Karl. It’s going to get nasty.” He said, “Naah, we’re going to miss it. We’re going to turn away from it.” Then we rounded a corner and headed dead-on into the storm. About 300 yards ahead you could see that a wall of heavy rain was waiting for us. On we drove. First there will large drops of rain and then, boom, it broke loose. The wind blew the car off course a bit and the rain was so heavy that I slowed to 40 mph. Both hands were on the steering wheel. I leaned forward to get a better look at the road ahead. Cars and semis had pulled off onto the shoulder.

I asked Karl if we should pull over. He said, “Naah, let’s keep going.” On I went, not knowing if a tornado was ahead, if a semi had jack-knifed in the road ahead, or if I’d hydroplane out of control.

It dawned on me last night that Karl has approached this illness with the same attitude. So far he has plowed through, persevered, pressed on. Nothing, not even a maelstrom of complications that appeared today, will keep Karl from weathering this storm.

Today started at 8 a.m. with a pre-surgical meeting in which redundant questions were repeated over and over (please note my redundancy). They need to make sure they get it right, they explained. That meeting ended by having the nurse and respiratory therapist tell us that the surgical team assembled for Karl’s surgery is impressive, even by Mayo’s standards. That certainly gave us confidence.

Next we met with the vascular surgeon Dr. Thomas Bower, who by divine intervention in my opinion, had a surgery cancellation for next Wednesday and took on Karl’s case. Our meeting with Dr. Bower may have saved Karl’s life. But I’ll get to that later. After explaining his role in Karl’s surgery, he acknowledged that he knew what Karl was going through…that several years ago he was diagnosed with colon cancer that involved 14 of 17 lymph nodes. He said this team of surgeons tends to be very aggressive. Because of his experience with cancer they want to attack it and get rid of it. There is something very comforting about having a physician who has had a similar experience take care of your loved one. Plus, he had a great sense of humor. I asked if he had a pretty steady hand, if he had any palsy, ticks or tremors. With a big smile on his face he stretched out his hand and wryly said, “Ice in the veins.”

Now to the life-saving part. Dr. Bower noticed that Karl’s left leg was swollen and so, “just to be on the safe side,” ordered a Doppler.

After the Doppler study, we had a meeting with Dr. Franklin Sim, who along with Dr. Michael Yaszemski, is an orthopedic surgeon who will carefully remove the tumor and “just enough” tissue around it to have clear, cancer-free margins. He got on the phone with Dr. Yaszemski and mentioned something about a blood clot found on the Doppler behind Karl’s left knee. He nonchalantly asked about postponing the surgery, or drug therapy, or an IVC filter. Needless to say, our eyes bugged out and our spirits dropped. He then scheduled an appointment with the thrombophilia clinic to evaluate Karl’s case. I don’t know about Mom or Karl, but my stomach was churning.

Dr. Wysokinski, with whom we counseled about Karl’s thrombosis during a 5 p.m. appointment, explained this is common in cancer patients. The bottom line is that Karl will now need heparin injections to thin the blood. On Monday he will undergo a procedure (probably with Dr. McBride, who he described as a "master" in this area) to receive a temporary inferior vena cava filter which stops blood clots from traveling to the lungs or heart, thereby saving his life. (Dr. Wysokinski was also impressed with Karl’s team of surgeons and said they are the best team available and again put us at ease. He said Dr. Bower may have saved his life by ordering the Doppler and marveled at the fact that it was ordered.) Karl will need heparin injections until he finishes chemotherapy and then will need Coumadin until he is cancer free.

As we crossed the Mississippi River yesterday into Minnesota, the rain lightened. The clouds broke and some clung closely like thin wisps of fog over the hills and valleys near the Mississippi. As we came closer to Rochester, the skies began to brighten and were clear light blue. Then as we entered the city, the sun was bright and even glared off the buildings of the Mayo Clinic.

The symbolism is pretty clear to me. God will help Karl weather this storm. And there will be a storm. We heard rumbles of thunder today and yet the right people were at the right place at the right time to order the right tests. Try to tell me God isn't with us. Just like yesterday, Karl needs to drive through and pay no attention to the vehicles stopped on the side of the road because on the other side of the storm are bright blue skies and sunny weather.

Peace and love,

Kerry

Surgery is scheduled

We have a surgery date. It will be Wednesday, July 16. This date brings along with it mixed feelings for Karl and the rest of the family. On one hand, he is nervous, apprehensive and downright frightened about what's to come. He'd be crazy if he wasn't.

On the other hand, July 16 will be the beginning of the end of his climb to the summit of the hill. He is really eager to have this tumor removed and have his spine reconstructed in order to begin the process of recovery and rehabilitation.

On Thursday we went for one final check-up with Dr. Scheutze before surgery. We were very happy to learn the tumor had shrunk about one centimeter! Chemo Sabe is sure doing its job. Of course it's also made him a bit anemic and he had to get a unit of blood, but that's become a fairly normal side effect.

I think it's time I reveal to you that when we initally met with Dr. Scheutze, he told us there was a 33 percent chance the chemotherapy would increase the size of the tumor, a 33 percent chance it would stay the same size and a 33 percent chance that it would shrink. Needless to say, that made us all pretty nervous. However, I have absolutely no doubt that your prayers and God's grace put is in the "shrinkage" category. Thank you and mostly, thank God!

Today, Karl flew to Washington, D.C. to the National Institute of Health (NIH) to undergo another battery of tests. This time it's for study purposes. Since the type of cancer he has affects only one percent of adults with cancer, the NIH wants to learn more about it. He will have a PET scan among many other tests. I'm sure it's to see if the particular chemotherapy protocol he has undergone is the best way to kill the cancer cells. Karl is eager to help others with sarcomas and especially peripheral nerve sheath tumors. He was told Thursday that it will probably be 20 years before they see another patient with a tumor in the same location as Karl's.

He will be home tomorrow, long enough to pack and ready himself for the 10-hour drive on Thursday to Rochester, Minnesota and the Mayo Clinic. He has appointments with the various surgical teams scheduled for Friday, Monday and Tuesday. On Tuesday evening, he checks in for pre-surgical procedures and then very early on Wednesday the surgery begins.

Since I know some of you will be anxious to hear news, any news, I will try to give you updates via this blog as soon as I get any information. Wednesday will surely be a grueling, long, anxious, hand-wringing, nail-biting (if I could think of more adjectives I'd put them here) day. But to keep me busy that day, I took the remainder of Karl's hat photos last night. I sure hope I get the captions right. Karl has already caught a few mistakes on the ones I've already posted. Bear with me...I'll correct them, hopefully. If not, please let me know, okay?

In the meantime, I have heard some of you have tried to post on this blog to no avail. If that's the case, feel free to email messages and words of encouragement to Karl. I don't know that I'll be able to respond to each email personally, but I will certainly relay your message. The email address is hamiltonsmith.family@gmail.com.

Mom and I will be staying in an apartment about 13 blocks from St. Mary's Hospital where Karl's surgery and recovery will take place. That address is:
211 First St. NE
#413
Rochester, MN 55906-3712

Finally, some of you have asked how Karl is doing. I think Karl is coping with all of this by looking beyond this year. He's thinking that in 2009 and 2010 he'll look back and say, "Boy, 2008 wasn't a very good year for old Karl. I'm glad I got through that." Your support, friendship, words of encouragement, yard care, meals, cards, hats, lawn mowing, donations and prayers have lifted him up and helped him so much...you'll never know. We are so thankful and we all feel your love.

God's Blessings,

Kerry

In sickness, sorrow, want, or care,
Each other's burdens help us share;
May we, where help is needed, there
Give help as though to You.
And may Your Holy Spirit move
All those who live to live in love.

What's goin' on

We were all a bit worried that Karl may have been on his feet a bit too much at the Rock N Bowl, but he was so pumped up from that night that he did surprisingly well...until about Tuesday when his hemoglobin dropped to 7.2 (normal is 13-15). That's a normal side effect from chemotherapy. Its job is to destroy fast-growing cells such as a cancerous tumor. But then it also stops hair growth as well as red blood cells, ergo the drop in the hemoglobin count. He received two units of red blood at Herrick Medical Center on Friday, and was feeling much better on Saturday and his appetite picked up a bit, although he can't taste much these days.

We've also been busy trying to find a place to stay in Rochester, which has been particularly difficult. We know we'll be there for more than a month so we'd like something more than just a motel room with a refrigerator and microwave in it. I'm confident it will work out.

And speaking of housing, we will be putting Karl's house in Adrian on the market (by owner) and so we've all been busy cleaning, sorting, packing, etc. I have to tell you, because I find it so darned funny, that Karl was incredibly prepared for any possible food shortage brought on by Y2K eight years ago. Karl had even labeled Saltine cracker packages with "stale" on the outside. Now who on earth puts a stale package (actually, there were 3) of crackers back in his cupboard? Karl explained that he kept those in case he needed them for cracker crumbs. "Ohhhh," I said, nodding my head in presumed understanding. I have to admit that I still don't get it.

Today Karl is getting his monthly MRI and CT-scan and tomorrow, July 3, we see Dr. Scheutze for a follow-up appointment. We are also hoping he'll tell us about Karl's PET scan in Washington, D.C. Karl will fly in to D.C., brother Kirk (who lives 2-3 hours away near Philadelphia) will pick him up, take him to the appointment, and then get him back to the airport. What, you may be asking yourself, is the reason he has to travel all the way to D.C.? The answer is because it's free of charge. For purposes of the study in which Karl is participating, the PET scan will determine how much the chemotherapy regimen has affected the cancer.

Anyway, we still have bunches of photos to take (mostly hats), post and label for this blog, but I have a feeling I won't be getting to that anytime soon. I know I'll have time once I get to Rochester. I'll let you know as soon as I hear about a definite surgery date.

Until then, keep the faith!

Kerry

Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer.

Romans 12:11-12

Thank you so much!

We are still in awe and so very touched by the support -- both by your kind words and monetarily -- Karl received on June 20 at the Rock N Bowl. There must have been at least 300 people there. It's really difficult to put into words what it meant to all of us. And it's also going to be very hard to thank everyone for what you did. Suffice it to say that we all shed a tear or two (okay, buckets on my part).

I never know if it's good form to say how much was raised, but since so many people have asked, I think it's appropriate to tell you that it's upwards of $7,000. This will be so very helpful to Karl to bridge the gap between the time his short-term disability ends and his Social Security kicks in.

Special thanks go to Kayla Mohr and Tina Wheaton for everything they did to plan, organize and put on this wonderful event. You guys are fantastic. I regret not getting a photo of the two of you, but I did get a bunch of photos. And here they are:





XOXO,

Kerry

Go Blue!

Part of the U-M Medical Inn Infusion Team

Hail to the victors valiant, hail to the conquering heroes, hail, hail to Michigan, the leaders and best!

Karl used to attend U-M football games frequently. He’d watch as Henne would throw a slant pass to Arrington who’d scurry up the middle. He’d marvel at Hart’s ability to stop and juke, sloughing off would-be tacklers. Yes, there have been impressive teams at U-M (is Appalachian State and Oregon on the schedule in 2008?) But none of them compare, as far as we’re concerned, to the U-M medical team.

Karl has met some pretty incredible, compassionate and caring folks who have taken him under their wings while receiving care at University Hospital. Dr. Scheutze's and Dr. Biermann's staff have been wonderful. But the poor gals in chemotherapy infusion at Med Inn have been exposed a bit more to this family and our strange brand of behavior. They've been great about educating all of us about the various aspects of chemotherapy and its effects. They've been concerned when Karl isn't feeling well and they try to make him feel better by checking his levels and giving him an extra bag of blood or medication. They've kept things upbeat and as normal as possible. They chime in and make fun of him when it's appropriate...and it's often appropriate.

Apparently Karl had some sort of effect on them as well. And because Friday, June 20th, will be his last chemo infusion for awhile, they decided to make him an honorary member of the staff, giving him a U-M badge and lanyard with his photo on it (the dreadlocks photo no less).

Because they've been such a vital part of his recovery so far (and saved his life countless times by catching him before he fell forward out of the chair onto his head), he wanted me to post their photo and let them know he will think of them and remember their good wishes as he looks at his blog while recovering from his surgeries at the Mayo Clinic.

Thanks for everything Janie, Jan, Jan, Joann, Mary, Debbie, Annie and the rest of the crew!

Kerry, Karl and the rest of the family

A lesson in patience

For the moment, we’re waiting…or should I say, waiting again. But this time we’re waiting in the radiology department at Methodist Hospital, which is connected to the Mayo Clinic. Karl just got done drinking some yummy berry concoction that has radioactive iodine in it so that there is contrast in his CT scan. He has already been pegged as a pain in the butt by the staff at the desk. Go figure.

Let me just say that the Mayo Clinic is impressive. And huge. There are numerous hospitals interconnected by an underground system of hallways. There are areas where you can shop, lounge, use a computer to look at the Internet, or listen to various pianists, violinists, flutists, and soloists playing/singing upbeat music like Amazing Grace and God Bless America. Shuttles run from motel to hotel to hospital to clinic. It seems that the entire focus of Rochester, Minnesota is on the Mayo Clinic. People from all over the world come here. How blessed we feel that we were referred here. Karl’s doctors are very impressive, including the first physician who visited with us, Dr. Michael Nett. He showed us all of Karl’s films and gave us very interesting bits of information…Karl has a fracture on his sacrum. And he’s feeling like a tough guy because he’s been walking upright all this time with a broken back.

This morning’s meeting with Dr. Y was extremely informative, but we’re still waiting for a surgery date. The details of Karl’s surgery are, to say the least, overwhelming.

The bottom line is that Karl’s initial surgery to remove the tumor (and his broken back) will take 14-20 hours. His follow-up surgery to rebuild the sacrum will, if all goes well, follow in a week and will take another 8 hours. Karl was told to expect to be in the hospital for a month. His surgery will take place at St. Mary’s, which is the orthopaedic wing of Mayo, and he’ll be in the anesthesia ICU during that time…mostly to control his pain. In all, 8 surgical teams will be working to remove the tumor and repair the affected area to offer him the best chance of a cure and to get him back to some semblance of normalcy. He will be able to walk, in time, but because they are removing a large chunk of his spine, it will take some time.

In a nutshell, it will take 2-3 weeks for Karl’s wounds to heal before they can do more chemotherapy to make sure they zap any other cancer cells that may be floating around. They will probably also do some radiation. It will take another 6-9 months for his bones and bone grafts to heal…if all goes well. So, we’ll be waiting some more.

But we are prepared for the wait…even though we don’t know exactly what the wait will bring to us. As long as Karl has your prayers, good wishes and support, he can get through this…one day at a time.

Until then, we (Karl, Cindy Hook and I) will soon start back on the road for the 10-hour journey and will be home sometime early Friday morning, barring we don’t run into floods and tornadoes. Karl starts his fourth course of chemotherapy on Monday, and hopes to see you on Friday at the Rock N Bowl.

Wishing you God’s peace,

Kerry

Favorable & Optimistic

We have a date: Karl's appointment with Dr. Y at the Mayo Clinic is Thursday, June 12 at 1 p.m. We have so many questions and we're hopeful they will be answered when we meet with Dr. Y. We will let you know how it goes, but until then, here's a Karl update:

Last week, Chemo Sabe beat Karl up pretty well...but then again, we expected that. He looked like a typical chemo patient...tired, bald, dark circles under the eyes. But this week he's feeling better and has less pain than before. I should tell you that Karl shaved his head because it was very splotchy in terms or hair growth. His head now has the characteristics of Velcro -- he has a fun time removing shirts and hats because they cling to the very short whiskers of hair on his head. It's almost like he's wrestling with himself and I must say, is pretty comical at times.

But aside from how Karl is feeling, there is other news. After his last CT scan and MRI, we were told the cancer still had not spread. FANTASTIC! We were also told the MRI had revealed the tumor had not changed in size, but it had changed in structure. Dr. Scheutze must have sensed the deep concern on our faces because he quickly added, "That's favorable." He added that he did not expect the tumor to shrink at this point, but the fact that tumor had changed in structure was a very good sign. We later learned from the nurses that tumors often die from the inside out. We're assuming that's what is happening. Dr. Scheutze, who is generally a very serious physician, was joking with Karl and ended the conversation by saying, "I'm optimistic." Now, from my experience with oncologists and others who work in the cancer field, they try to stay away from encouraging words -- not to discourage patients or their families, but mainly to cover their own rear-ends. So, when an oncologist says the words, "favorable" and "optimistic" in terms of Karl's tumor, I take it to mean we can all be truly optimistic.

There's a sidebar to this particular report. The morning of Karl's appointment, I had written a prayer and emailed it to myself. In it, I had asked God for a long list of specific requests including: "...that today's report with Dr. Schuetze is favorable and optimistic." I feel it's pretty important for me to bear witness that God answered my prayer. I don't think it's a coincidence that Dr. Schuetze used the same exact words I used in my prayer, do you?

The underlying message here is PRAYER WORKS! KEEP IT UP!

Blessings,

Kerry

And may these words of mine, which I have prayed before the Lord, be near to the Lord our God day and night, that he may uphold the cause of his servant and the cause of his people Israel according to each day's need, so that all the peoples of the earth may know that the Lord is God and there is no other.

1 Kings 8:59-60

More inspiration

Every day we are touched by the kindnesses offered by people we know and by those we don't know who have expressed good wishes and sent prayers Karl's way. Karl was expecially touched when Erica Sellers sent an FC Dallas soccer team's hat, shirt and autographed ball. He has since done a little research and found them to be extremely popular in Texas. Apparently there are people in Dallas who would give their right arm for the souvenirs she sent Karl. But below is a letter sent to us by Jamie Pliscofsky, a former FC Dallas colleague of Erica's. We thought it was so nice of her to send this note. And we also thought everyone would enjoy seeing her uplifting message. It sure brought tears to our eyes! Thanks Jamie...for everything.

Mayo on the side

On Wednesday, Karl and I went to a "routine" check-up with Dr. Schuetze. Having never gone through this process, we both questioned what would take place. Boy, were we surprised.

One physician's assistant (PA) asked Karl how his pain was and was delighted to hear the effect the chemotherapy was having. Another PA came in and checked Karl over a bit...she looked at the strength in is feet and legs and deemed there was an improvement. She, too, was very happy with the progress and relief caused by the chemotherapy. Then she announced that Dr. Biermann would be coming by to discuss some options.

Soon after, Dr. Biermann came in, told Karl she heard he was responding well to the chemo and declared this was integral to his future treatment. Dr. Biermann then gave us some jaw-dropping news. She said she had discussed Karl's case with a colleague she knows at the Mayo Clinic in Rochester, Minnesota. His name is Dr. Michael Yaszemski (Dr. Y) (http://www.mayoclinic.org/bio/12561827.html) and he is skilled and experienced at performing the type of surgery Karl needs. Dr. Biermann said that because the tumor is located on the upper part of Karl's sacrum and because many nerves are located in that particular area, she asked Dr. Y if he would take the case. Dr. Y agreed!

You may be thinking that this sounds like a very serious thing. Well, it is. Dr. Biermann explained that this surgery is very complicated -- that Karl would have incisions both front and back in order to move organs and nerves out of the way while they remove and reconstruct the affected part. Karl will have a long period of physical therapy after recovering from surgery. Obviously, this is all pretty darned scary.

But here's the fantastic news: Dr. Y is willing to do this because it is a CURATIVE approach. Dr. Biermann said that five years ago, this approach was not available. Needless to say, we feel very blessed...first, that Dr. Biermann actually knew someone that could do this; second, because she asked if he would do it; third, because Dr. Y said he'd take the case; fourth, because Karl has health insurance that will pay for most of this; and finally and most importantly, because God is with us.

We really know no other details except that the good folks at U-M are trying to set up an appointment for us to meet with Dr. Y sometime the week of May 19. In the meantime, Karl will have to undergo three more rounds of chemotherapy, the first of which starts Monday.

So, keep praying and keep the faith. Karl has been given an opportunity to BEAT this. With your support and prayers and a lot of hill-climbing on Karl's part, he will beat this because after all, Karl is a climber.

Kerry

As for God, his way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in him.

Psalms 18:30