Celebration of Life

Silent Auction for Andy's Memorial Fund

The great folks at Midwest Mountaineering have asked that you be reminded that they are having a silent auction to benefit Andy's memorial fund - to help defray some of the enormous medical bills that piled up during his illness. From the Midwest web site:

Silent Auction to Benefit theAndy Knapp Memorial Fund
Help Andy's family and get this brand-new Bell Northwind canoe! Silent auction bids are now being accepted via e-mail only at andysboat@midwestmtn.com . Be sure to include your name, telephone number and bid amount. Midwest Mountaineering will contact bidders prior to the close of bidding for information verification.

The Northwind is Bell's best selling Boundary Waters canoe! It is 17½ feet long, 36 inches wide, weighs 48 lbs. and is constructed in Bell's premium Black Gold carbon/kevlar layup with beautiful wood trim. Bell Canoe has donated half the wholesale value of this canoe. The retail value of this boat is $3,240.95

Submit your bid today! Bidding will be closed and the canoe awarded to the highest bidder Friday, July 17th at 8:00 p.m. at the Celebration of Life Party at the Cedar Cultural Center.
All proceeds will go to the Andy Knapp Memorial Fund for the benefit of Andy's family.

Remember, the doors open at 6:00 pm, not 5:00 as previously stated...

Andy's Obituary in the Minneapolis Star Tribune on 6/24/2009: click here

...and picked up by the Washington Post: click here

The End Has Come

Friends and Family,

Andy has left for his next adventure.

At 3:00 AM on June 22, 2009, Andy paddled off into the night.
He was surrounded by his loving family for this peaceful sendoff.

Denise appreciates everyone's comments and farewell notes to Andy in this blog.

There will be a Celebration of Life in mid-July, please stay tuned for the details.

You can continue to send him a farewell messages, and leave notes for Denise and Kaitlyn on this blog.

Goodbye, good friend.

Andy is Entering Home Hospice

It's time to say goodbye to Andy.

He will be coming home from the hospital on Saturday, June 20, 2009.

He will be entering home hospice. He said last night that "it was time to wind this thing down".

It has been a long 6 year battle, but now it's nearing the end.
Denise welcomes his friends to come by to visit with Andy.
He will be tired, so short visits and small groups would be best.

Please just come on by, you don't have to call first.

Andy Knapp, Denise Dohrmann, and Kaitlyn Knapp
4936 36th Ave South
Minneapolis, MN 55417

612-729-2879 home phone
612-220-8493 Denise cell

He won't be on hospice long, he is ready to move on to his next big adventure. If you are going to come by for a vist, do so soon.

If you can't visit, leave him a Comment here and Denise can read it to him.

Recovering Slowly at Home

Day 105. The problem I had before the last six day stay at the hostital turned out to be too low a drop in blood pressure. I fell three times in three days and injured my back and shoulder, which is still pretty much black and blue, and back to the hospital it was for observation.

I am weaker now; the steroids I am still taking for DVH are extremely hard on the upper legs and arms. So it it hard to stand up, but I am getting along with my walker pretty well. The PT exercises are bginning to help, but it's going to be a long revovery.

-Andy

Set Back! Six More Days inthe Hospital

I'm back at home now, but a bit weaker. More later.

At Home Again!

Day 86. I was released from the hospital over the weekend, and it is a great relief to at least be at home. It is a more stimulating environment to sit around in, there are more foods I can eat, and it is good to see more of Denise, Kaitlyn, and the animals.

I can eat small meals- we are trying to jump start my GI tract after almost two months of intravenous feeding. I still will be on the intravenous feeding for about a month, using a home portable IV unit, until we taper off. I also do one other IV infusion at home which will end June 3.

One of the side effects of the drugs and the IV food is the extreme edema in my feet and legs. I estimate I have about 15 extra pounds of body weight. When we got home, Denise went up to Nokomis Shoe Shop and bought a cheap pair of size 16 New Balance shoes so I would have something on my feet other than Ace bandages. Climbing a flight of stairs takes considerable effort.

All in all, I have probably about two more months of recovery from what was a very severe case of GVH (see other posts for details) as well as the quarantine period, although I can go outside if I wear the breathing mask.

More soon, I hope.
-Andy

Going Home Again?

Day 79. Despite remaining side effects from the GVH, such as stubborn diarrhea and edema (my legs and feet look like tree trunks and the only shoes I will be able to wear on them is my Sorel boots with the liners out), there is a good probability of getting out of the hospital within the next week.

The doctors are switching IV meds to pill form for home use, I am attending several classes in home IV care, and the PT people have signed off on my ability to manoever in the home environment without going through the physical therapy classes at another hospital. I have lost a lot of muscle mass and will be using a walker and my cane, but I feel that at home, I will be more active and will recover faster. I have already climbed a full flight of stairs to show them I can live at home.

I hope I am out of the woods. The second hospital stay of eight weeks has been a tremendous ordeal, espescially when you're not expecting to go back in.

Again, I want to thank all those who have been sending best wishes, and to say that replies and thank you cards are still coming.

A Reprieve after being Very Ill.

Day 69. After being readmitted to the hospital on Easter with serious side effects of the Graft vs. Host Disease (GVH), I was too sick to deal with Email or anything else. GVH is the rejection of my host body by the new immune system, and included side effects such as vomiting, diarrhea, confusion (which may be normal in my case), spotted skin, peeling, and edema.

It is a very serious condition, and happens to varying degrees in about half the cases. I pretty much stayed around in bed as the medical team (BMT is prepared for it) tried the mix of steroids, anti-rejection drugs, and other related therapies. For the last four weeks, I have been fed primarily through a tube, being too sick to think about eating. (although actually, right now, I weigh more now than I did when I had to drop everyhing and return.) I don't think you'd want to see much of this synthetic, intravenous food, however.

The low point earlier this week came with massive diahrrea and loss of blood at both ends. Now, the complete exhaustion as eased, and I decided I better get get this message out now. (Thanks Denise and Cheryl for filling in.)

There are some concerns among the doctors about the response rate they are getting to the therapies, but I am personally doing better and can sit up now and walk in the hall a bit.

On top of it all, the U of M/Fairview computer system crashed a week ago now, and I am just now getting a look at 4 weeks of email. I hope to answer all eventually, but it will take some time.

First, an initial blanket Thank You to my friends in the Outdoor Industry for your support. My family appreciates it.

Second, to my immediate family and friends, hang in there; we're going to beat this!
-Andy

Three More Weeks In The Hospital and I Haven't Even Told You

I've been very sick as a result of the conflict of host vs. graft disease. The new system (my brother's cells) is fighting my system.
I've been back in the hospital for the last three weeks, but we're making progess now.

I'll try to update this a little more frequently. Your comments are appreciated.

Day 28 - One Month Into It.

Day 28, a bit of a milestone since The BMT clinic is starting to test for possible results in this lengthy process with a bone scan, a CT scan, and a number of blood tests, I will find out at least some of the results at tomorrow's appointment.

Most of the past week I have been bogged down with a bit more nausea and fatigue, so I haven't been checking email as regularly as I would like. My intention is to answer everyone at some point, so be patient and I will get back to you or your group. I appreciate every one's comments and support. More tomorrow when I have some up to the minute results.
-Andy

Days of Sleep and Popping Pills

I've had a bit more energy in the last few days, but every activity I do is still overshadowed by intense fatigue. The background nausea is more under control with a different medicine, so I can eat a bit more and stop the slow loss of weight. I'm taking about 46 pills a day of 16 different medications, with five more in reserve if various symptoms arise. It's almost a part-time job managing all this, especially since the doctors frequently tinker with the exact doses as the latest blood counts and blood chemistry numbers come in.

On a more positive note, Denise, Colonel, and I took a five block walk after the Saturday doctor said I could go outside as long as I wore the heavy duty N95 face mask and as long as I avoided crowds and groups of people I didn't know. Tiring, but it was great to get outside again and enjoy our springlike warm up.

The Loss of Outdoor Friends

I checked my email after the last post, something I had not done for several days, and as the tears clouded my eyes, I did not get very far. Craig Martinson- your spirit will live on! Craig was a kind and gentle person, quick with wit and a great friend to many of us. He certainly has been an inspiration to me as I have battled cancer.

I also want to salute a longtime industry friend, Rob Hart, who died in a ski accident in February. Rob was the inventor of the Crazy Creek camping chair, a campsite staple. One of the industry originals, he had a sense of humor and absurdity about the outdoor industry and life in general. He will be sadly missed.

Back at Home - and a Slight Setback

Day twelve. On Thursday, I was discharged after a class on how to care for the Hickman catheter. It was a tiring day, but it was great to get home even though things look bare without all my plants. The big chore each day is getting all the medicenes taken at the right times- the anti-rejection drugs; the antiviral, antifungal, anti-yeast, and antibiotic pills; mineral supplements; blood pressure regulators; medicene to prevent nausea; and drugs to prevent stomach ulcers and protect the liver. Then there are pain pills, anti-diarrhea tablets, and sleeping aids as needed.

Friday went well, with lots of extra sleep, and the security of my favorite foods in the refrigerator. I've still been somewhat nauseous, so I have to pick and choose what I can manage to eat.

This morning, I woke up with a sharp pain on my right side and very short of breath. It was below the chest catheter, so I was afraid I was developing a lung infection, and back the hospital it would be. Denise drove me to my daily BMT clinic visit and luckily my main consulting doctor was doing weekend duty. After checking vitals and poking around, we concluded that I had probably fractured a rib while coughing during a period of nausea.

That was much better than an infection at this point, although it seems silly to think of a broken rib as good news. I've been down that road before after bicycle crashes, and I'll just have to ride it out.

Homeward Bound?

I woke up to some surprise news this morning, as the team of doctors I see each morning announced that I could be released to home care as early as this weekend, over a week earlier than I expected. With the blood cell counts steadily improving after the transplant, and no signs yet of infection or Graft Vs. Host Disease, they say I can improve as easily at home as in the hospital.

We had to coordinate our small group of home care providers quickly to attend the BMT care giving classes on Thursday before I can be discharged. The various IV drugs I am still getting are being changed over to pill form so I can take them at home. With several months yet to go, being quarantined at home will give me more space to move around in and more projects to relieve boredom, plus the comfort of my family.

I still will have to return to the BMT clinic every day for the foreseeable future to be checked over and get several injected drugs. With all these drugs, it will be a long time before they'll let me drive, so I will be looking for volunteers for driving occasional shuttles to the clinic at the U of M.

I appreciate all the comments you friends and family have posted here, and hope you find this enjoyable.
-Andy

Sleeping and Waiting

My blood counts are way down as expected, and I'm sleeping a lot and fighting periodic low grade nausea. There's not much to do but to ride out this low point in the cycle. The staff here is great and I'm as comfortable as can be under the circumstances. The PT people are a bit relentless at making me get at least a bit of exercise most days. :)

Day Zero

February 23rd was transplant day, the moment to begin to rebuilt my immune system with the donor cells. My Brother Pete spent six hours hooked up to the machine that extracted the necessary blood components through a port in his neck. They managed to get more than enough in that first sitting, so he had done his part and was a very happy camper.

After several hours of processing, the cell mixture was brought up to my room in the evening for the infusion into my IV lines. The actual process took about 15 or 20 minutes, and Denise, Kaitlyn, and Pete had a toast of Catawba juice, while I fought off drowsiness from a preventative shot of antihistamine. Rather anticlimatic.

Now, I begin the waiting game and the time of greatest risk of infection. It will be a week or two before we see any measurable new blood cell growth, then a bit longer yet to see whose immune system is winning the battle. And it will be months before we know if this is going to attack my cancer.
-Andy

Down for the Count

Sunday, day minus one.
The effects of the chemotherapy and immune suppressant drugs are starting to take their toll. On Friday, I felt achy and flu like most of the day, but managed to get in some exercises and a "bike" ride. My daughter Kaitlyn and her friend Molly came by in the evening to watch a movie, have popcorn, and visit a bit, for a nice diversion.

Yesterday, I was very fatigued all day and just slept most of it away. My appetite has pretty much dwindled away as well, and further side effects are expected to progress for the rest of this coming week. This morning, I had the total body radiation scan to further reduce the immune system and get ready for tomorrow's transplant.

It is ironic to walk into the hospital relatively healthy, only to to be knocked flat on your back, barely wanting to move. But now, as one of the doctors said, we are done tearing you down, and are ready to build you back up. The transplant will be tomorrow evening, the 23rd.
-Andy

Getting My Exercise While Confined to the Room

There haven't yet been many side effects from the various drugs yet, so I focused on the exercises I can do in the room to help keep somewhat fit, to prevent bone density loss, and to keep from going stir crazy. Two PT staff persons helped me go through sets of upper and lower body exercises that can be adjusted as my blood platelet count drops during the therapy.

Then I spent 30 minutes on the exercise bike, and quickly discovered, as I always suspected, that stationary exercise is a lot more boring than doing it outside with the sights, the wind, and the weather. Even my push lawn mower and my arsenal of snow shovels are more fun than just doing weights. To help motivate, I bought an MP3 player before I came in, so now I will just have to learn how to load songs onto it.

Settling in for the Long Haul

Today, day minus 5 (until transplant) was a relatively busy one, with chemo infusions; regular rounds by the doctors, nurses and aids, who closely monitor the side effects of the drugs; and a visit by a PT person who set me up with a stationary bike in the room to use. She seemed to be delighted to work with someone in relatively good condition. The "bike" doesn't have studded tires, lights, or fenders, but it will get me through the rest of the winter!

Because renal cell cancer is resistant to most forms of chemotherapy, the chemo and other suppressant drugs I am receiving this week are intended to greatly weaken my immune system before the donor transplant. A full-body shot of radiation on Sunday will complete the one-two punch that will lower my blood cell counts and confine me to this room for the next month.

The side effects of all these procedures will manifest themselves within the next two weeks, including probable hair loss. The various targeted drugs I have taken for the RCC in the last three years have some similar side effects, so I am mentally prepared for the fatigue, possible nausea, loss of appetite, and mouth sores. And with months of recovery, and about a 30% chance of success, I have concluded that this still remains my best option.

On the bright side, I have a room with a view to the south- can't quite see the Mississippi due to an intervening roof, but there is sunshine coming in on the clear days. I can watch for signs of spring on the hills of the Riverside neighborhood across the river. And I now have more time for reading, writing, and other sedentary pursuits.

In the meantime, I have learned to take each day as it comes, and not get overburdened with the enormity of the journey ahead, much like starting out on a long trip by bike, boat, or backpack.
-Andy

Cancer Clouds My Horizon

Once again, I am starting a new adventure- but this one will be entirely indoors. I am back in the hospital preparing for a bone marrow transplant, a type of immunotherapy that has a chance of attacking the renal (kidney) cell cancer I have been fighting for six years. I will be in this room for over a month, and as I write this, I am receiving via IV the third of three kinds of chemotherapy that are used to suppress my immune system for the transplant.

On Monday the 23rd (day zero), I will receive an infusion of marrow and stem cells from a donor- my brother Pete is the match- which will hopefully replace my immune system and attack the cancer tumors. The immune system takes many months to return to normal, which explains the long hospital stay and the additional months of being quarantined at home. The adventure for me is to cope with being holed up in one place instead of being as active as I usually am.

In this phase of the blog, I will talk about that process, as well as other thoughts that come up. Comments are welcome, and I will also be adding more updates and stories to my website, now that I have forced time on my hands.

Thanks to all those who have already expressed their best wishes.

-Andy