Kristin's Progress

Kristin Kay (Ehnbom) Hopkins Kristin K. Hopkins, 62, passed away peacefully at her home in Kimball on Saturday, November 3rd following a nearly 3 year long battle with a malignant brain tumor.  Kristin was born December 5th, 1944 in Wadena MN to the late Rudolph E. and Juanita L. Ehnbom, then of New York Mills, MN..  Her family moved to Hurley WI in 1954. Both of her parents taught in the Ironwood school system.  Kristin attended J. E. Murphy High School, graduating in 1962.  She attended Macalester College in St. Paul MN for one year and then Gogebic Community College for a year.  She was married to Larry Michael Hopkins on August 8th, 1964.  The couple lived in San Diego CA, Bremerton WA, and Hayama Japan while Larry was on active duty in the Navy.  In 1970 they moved to East Lansing, MI where Kristin worked to help put her husband through graduate school.  They then came back to the Gogebic Range in 1972 when Larry was offered a teaching job at Gogebic Community College.  Kristin returned to Michigan State University in 1974 and completed the last two years of her degree in barely over a year.  She was awarded a Batchelor of Fine Arts degree in Studio Art Practice with highest honors. Kristin was an adjunct faculty member of Gogebic Community College where she taught ceramics, and had worked for The Crafty Lady Gift Shop and as an optical assistant to Dr. Richard Miller.  She was a volunteer in Theatre North, and a Stampin Up Instructor.  She was also a spinner and raised sheep and llamas and turned their wool into yarn.  She was active for many years as a 4-H leader and as a youth leader at Zion Lutheran Church.  She volunteered at the Dove Women’s Shelter and was honored as Dove’s Volunteer of the Year.  She was also a volunteer for the Southeast Llama Rescue Organization and was the Moderator of the International Shetland Sheep Internet List.   Kristin is survived by her husband, Larry, her brother Daniel of Charlottesville VA, her brother John (Jill) of Brooklawn, NJ, her mother-in-law Mildred Hopkins of Ironwood MI, by the daughter of her heart, Joy (Lantta) Roberts of Longmont CO, two nieces, a nephew, two great-nephews, a great-niece, and many friends.  She loved animals, and two cats and two dogs were constant and beloved companions during her illness. Funeral services will be held at Zion Lutheran Church in Ironwood, MI at 11:00 A.M. on Thursday, November 8th .  Cremation has taken place and her remains will be interred privately.  Donations in lieu of flowers may be made to the Dove Domestic Violence Escape Shelter of Ironwood, MI or the South East Llama Rescue Organization (SELR). - www.leftofcentercreative.com/donate.html

Thursday 10/11/2007 - 19:15

I have not been able to get Kris up or to her chemo treatments for several weeks. Tonight her Oncologist drove over and visited with us. He told Kris that the chemo has lost its effectiveness - that the tumor has developed resistance - and that it is time to stop. The BCNU (see previous post) had no visible effect. She has stopped reading and has almost stopped eating. I have not turned her computer on for over a month.

When Dr. Neidringhaus left, he told me privately that he expects Kris to slip into a coma, possibly in as soon as one month. At least Kris is not currently in pain. She is completely bed-bound and some days it is just not Kristin inhabiting that body. Her brother Dan from Virginia is visiting for a few days. We have a home health care nurse in once a week and aides come in three times a week to help get her cleaned up and the bedding changed. Otherwise, it's just me.

The Shetland herd will be going on November 4th. Two llamas are going this Sunday, two others will be picked up "soon", and I hope two more will be heading down towards Milwaukee this fall. That will leave me with 4 llamas and 11 big sheep to overwinter, one more llama than I want to keep.

Monday 8/6/2007 - 10:15

We got some bad news last Friday following the latest MRI. As they put it, there is "increased enhancement" at the tumor site indicating the growth of new blood vessels. The MRIs are hard to interpret due to the damage caused by two surgeries, the Cyberknife radiation, and the implantation of the Gliadel wafers during the second surgery. Increased blood vessel growth indicates increased tumor activity or growth.

I had expected this because Kris's strength has declined appreciably in the last 4 weeks. This follows nearly 9 months during which the MRIs showed no change. The Oncologist thinks that the Temodar is no longer effective and wants to put her on BCNU which is an older and less effective treatment (IV chemo therapy every 6 weeks). He is hoping that there may be some synergy between the Avastin and the BCNU. This has not really been tested as BCNU was replaced by Temodar (the oral chemotherapy drug that Kris has been taking) before Avastin was developed. At any rate, there will be a delay as Kris's platelet level is too low right now following her last round of Temodar.

Kris is at home and appreciates phone calls and visits. She has bouts of confusion but is mostly her old self. Most of the anti-convulsive drugs that she takes are also anti-depressants so her mood is usually pretty good.

We finally can get DSL from the phone company so we discontinued the satellite hookup. The Hughes.net email addresses are no longer valid. If you send Email to Kris@LKHopkins.com, I will print it off for her. She is having trouble with the keyboard of her computer and no longer sends out Email.

Tuesday 1/16/2007 - 20:10

Kris got gastroenteritis just before Christmas and ended up in the hospital for a couple of days, being treated for dehydration and low platelets. Anyway - the hospital Physical Therapist and the Social Worker wanted to put her in a local nursing home for 30 days for inpatient physical therapy (see the previous entry). With the assistance of several medical workers, I got her admitted to Polinsky Rehabilitation Center in Duluth, MN today. She will get 3 or more hours of training and therapy there each day as opposed to 1/2 hour per day if she were in a local nursing home. Her phone (direct) is 1-218-786-2563 and she is in room 202. We'll get an idea about how long she will be there at Friday's conference.

While she is gone, I can do some of the rest of the messy stuff to the living room - tear down the rest of the ceiling plaster, rip out a wall, and install a new stairwell to the second story. Gonna be a bumpy ride for the next couple of weeks.

Saturday 12/09/2006 - 22:50

A much delayed update on Kris's condition. The Avastin has worked wonders in that there has been no tumor growth for the last two MRIs (one every three months). Her Oncologist has been showing her MRIs to all of the other Dr's in his clinic.

Kris is profoundly non-functional on her left side, Her left hand is not useable and she can only support her weight on her left leg with assistance. She is confined to her power recliner or a wheelchair. She also requires more time to recover from each chemo-therapy treatment. What started out as a 4 week cycle (5 days of pills followed by 23 days off) has now been extended to an 8 week cycle. It takes that long to get her platelets back to a safe level.

Her Email address is now shortsheep<at>hughes.net where <at> stands for the @ symbol. Direcway satellite services got bought out by Hughes. Also, our phone company finally got DSL this far out so when our contract for the sat. connection is up, we will be switching providers again (to avoid the very high cost of the sat. service), sometime in June.

I got the covered deck (porch?) on this fall as well as building a real wheelchair ramp. It is all done except for finishing the railings which will wait for spring. It sure makes it easier to get Kris out to the car for the biweekly trip to Ashland. The temporary ramp that I constructed from the front door was so steep that I had to nail 2X4 cleats on it for traction and it was all I could do to get her up and down without crashing. We now have about a foot of snow which also complicates everything. The contractor got siding on three sides of the house but the east side with the deck is yet undone. I guess that will have to wait for Spring now. This winter I will be working on the upstairs (subfloor, stairs, partitions, drywall, wiring, plumbing, heating, etc.)

Kris's brother Dan was here for Thanksgiving. I cheated and we got a prepared meal from a local supermarket and Dan, Kris, my mother, and I had a quiet Thanksgiving here.

She remains in pretty good spirits and appreciates visits from friends and phone calls. All of the nursing and therapy assistance that she was getting terminated when her condition stabilized. We have been hiring an aide to come in twice a week to help her get cleaned up. She just qualified for Medicare since she has been disabled for two years. We'll have to see how that changes things.

Monday 03/06/2006 - 14:50

Last Friday's reading of the latest MRI was a mixed bag. On the negative side, there was "increased enhancement" in the original tumor site which means that the tumor has continued to grow in spite of the chemotherapy. On the positive side, the lesion seen on the left side of the brain on the previous MRI seems to have disappeared.

Another positive note is that Kris was started on Avastin last Friday. The treatments are every two weeks and it is an I. V. treatment done at the Duluth Clinic in Ashland. The Avastin is in addition to her normal chemotherapy and she has had no measurable ill effects from the first infusion. Her platelet count was low so we are delaying the next round of chemotherapy for a week. She will start the next round next Monday.

Avastin is a monoclonal antibody - it attacks the blood vessels that supply a tumor. It is not chemotherapy per. se. It is approved for colorectal cancer and has just been approved for breast cancer. Trials are underway to test its' efficacy in spinal, kidney, and brain tumors. Her Oncologist is upbeat about the outcome of using it.

We just got set up with satellite Internet access and now have a working home wireless network. I will be setting Kris up with a computer this week and I've created an Email address for her. I don't want spam crawlers finding it so I'm not putting it here as a link but it is ShortSheep<at>Direcway.com where the <at> stands for the @ symbol. Our addresses with 'gogebic' in them will not be valid soon. There are going to be a lot of spammers who get non-delivery messages when those addresses quit working.

Kris continues to have a positive attitude and is encouraged by the Avastin therapy. She is getting occupational therapy twice a week to get more mobility into her left hand and physical therapy twice a week to help her use the walker and move around the house, although she can't move very far. Both of the therapists are also using electro-stimulation on her to encourage range-of-motion in her left hand and left foot. Both hand and foot tend to clench up.

Monday 02/06/2006 - 22:30

Kris starts her third round of oral chemotherapy tomorrow, She takes Temodar, an oral drug, for five days and then is off medication for 23 or so days before starting the next cycle. The Oncologist wants to wait until after this round of chemotherapy to do another MRI. From a personal point of view, I'm afraid of what this MRI will find. Kris is weaker and her bad days are more frequent. To add insult to injury, she had surgery for an abdominal insisional hernia two weeks ago. She has recovered from that with flying colors.

On a more positive note, our Oncologist has suggested a new treatment (in conjunction with the Temodar). The new drug has shown promising results in research at Duke University. It is currently used to treat colorectal cancer and has been shown to cross the blood/brain barrier and attack the blood supply of cancer cells similar to those in Kris's brain. Unfortunately, it is "off label" for brain tumors which means that insurance companies usually will not cover its' use. It is hellishly expensive however our Oncologist's office has a specialist working in finance and she has set up a scenario so that if our medical insurance will not pay for it, the drug provider will. This is to the drug company's advantage because if they can show that this drug is effective in treating cancers in other areas, then they will eventually be "on label' for those cancers. Then physicians can prescribe the drugs and insurance companies will pay for them.

On a lighter note, Kris's brother Danny is arriving tomorrow for a weeks stay. Danny has been visiting frequently - as often as his teaching schedule at the University of Virginia will let him. I've built a temporary wheelchair ramp out of the front door of the addition so that it is easier to get Kris in and out of the house. Unfortunately it is about a 1-1/2"' in 7" pitch which means that I really have to work to get her in/out of the house, There will be a 1" in 12" pitch wheelchair ramp coming off the east deck when I get the time to build it this spring/summer

Monday 01/02/2006 - 15:00

A lot of water under the bridge has gone by. Kris went to a five day treatment at the Cyberknife center at St. Joseph's hospital in Minneapolis in September. Five weeks after her return she started having seizures and ended up in Ashland Memorial Medical Center for nearly a week while the neurologist got her anti-seizure medications straightened out. A CT scan showed some bleeding and a lot of swelling as a delayed aftereffect of the Cyberknife treatments. She also was put on a large dose of Dekadron, a steroid, to control the swelling. Then in late November during a follow up with the neurosurgeon, we told him what was happening and he immediately ordered an MRI to determine the cause of the swelling. The tumor is back above the original site. There is also a very small lesion which has crossed the centerline and is located on the left side. He got us back with an oncologist from Duluth Clinic who travels to Ashland for two days a week so Kris is back on Temodar, the oral chemotherapy drug. She takes a large dose for five consecutive days and is off it for the next 23 days. She starts her second cycle tomorrow and then will get another MRI in late January. She had nausea problems with the first round but her blood counts did not fall very much. She has some really good drugs to help her with the nausea.

I got Kris a powered recliner chair to help her stand to use her walker. She sleeps in the recliner and I sleep on the couch in case she needs help during the night. Kris's brother Dan from Virginia will be visiting from January 5th through the 13th so that is something she can look forward to. We had my mother and a friend over for Christmas and I cooked a leg of lamb and some squash. Mother made the cranberry jello mold and a pecan pie and the friend made scalloped potatoes. We didn't do anything for New Years and the holiday season is somewhat depressing. I did manage to sing with the Zion Lutheran choir for the Christmas Eve service and we got the CD recording of the Chamber Singers' concert so that Kris was able to hear it. She was just starting the first round of chemo when we held the concert and we decided it was probably not wise that she be exposed to a large number of people.

The house is framed in and has a metal roof. I've removed all the remaining structure above the first floor and so now the contractor will remove the wall between the living room and the addition and finish framing in the rough openings for the upstairs windows. Then I have to pull wire for the electrical in the exterior walls and get the insulation in place, install ductwork, fir up the existing floor joists to get the floor levels to match and install a new sub floor above the old part of the house, and start on the new set of stairs. The guy is supposed to get the new wood stove prefabricated chimney installed soon. I hope so!

Saturday 09/10/2005 - 14:30

It's time I got caught up on this. To make a long story short, Kris ended up in Miller Dwan in-patient rehabilitation for over three weeks. The surgery and the setback with the seizure resulted in a fairly severe left side neurological deficit - kind of like having a stroke. She has been at home since her release and can walk with a walker but needs assistance on stairs and tires easily. She's been going to both physical therapy and occupational therapy twice a week here. Both of her therapists are friends of ours so that makes things easier. She is slowly regaining some of her ability to function

I've been pushing it to get hay made. I just finished (2000 bales) Tuesday. That will support the llamas, Shetlands, and a much reduced flock of "meat" sheep (anybody local want a lamb for the freezer?). We are also looking to cut back somewhat on the Shetlands and llamas and I have not done any custom work for others. To make things really interesting, we are pursuing the addition/renovation to the house so that Kris can have a real bathroom and stairs that are negotiable. (We currently have a half bath on the ground floor, a shower in the basement sauna. and stairs to the upstairs that are steeper than 45 degrees). The excavation for the addition (12 feet by about 24 feet) has been done and the foundation footings are poured. The contractor is waiting on the bracing for the foam foundation forms. The bracing is currently tied up with another construction project somewhere. I spent 3 hours with a jackhammer and managed to get a hole through the old foundation barely big enough for me to crawl through (18 inch rock wall foundation ). The final plan will have CLOSETS (we now have one) and a large master bedroom and master bath on the second floor, a real guest bedroom, an upstairs office, an enlarged living room with french doors leading onto a covered porch facing the farm fields, and increased basement storage for Kris' craft materials

Kris leaves Monday for five treatment sessions at St. Joseph's Hospital in St. Paul, MN with the Cyberknife Center. Cyber knife is a computer controlled radiation treatment system which inherits its technology from automotive assembly robotic development. It is used when people have already had generalized radiation and can not tolerate more. They use a fine scale MRI and CT-Scan to pinpoint remaining tumor tissue (and in Kris' case, also a PET-CT scan). Then they devise a radiation program that allows the Cyber knife robot to fire many bursts of radiation at the same location from many different directions, focusing the radiation on the tumor tissue but minimizing the amount of radiation on surrounding tissues. Our greatest concern is that this could cause more neurological deficit problems. We are, however, encouraged by the concern and attention to detail of the professional staff at the Cyber knife center. It turns out that there will be a Cyber knife in Duluth in December or January (which does not do us any good now!)

The statistics on Cyber knife is that it can increase longevity from 30% to 50%. Please don't ask me what that means in terms of actual years and months though it could mean a year or more. We are fortunate in that a lay-minister, Geri Sola, from the Episcopalian Church has volunteered to accompany Kris to St. Paul. This allows me to tend the farm and continue to prepare for the renovation. It really bothers me to not go with her, but we are so far behind this summer that I need the time to catch up as much as I can. The plan right now is, if all goes well with this procedure, Kris will go back on the oral chemotherapy drug and will have follow up scans done in three months. It seems with this bastard of a disease, everything is measured in weeks or months.

Sunday 07/17/2005 - 10:10

Actually started this this morning and am now finishing it at 20:30. We had a real scare yesterday. kris' Dilantin level (anti-seizure medication) dropped too low and before they could correct it she had a rather severe seizure. They moved her to the Miller Dwan Burn Center ICU and called me about 13:30. I made some frantic phone calls to friends to cover farm chores, threw some things in an overnight bag, and drove to Duluth on autopilot. Then when I got there I couldn't find her. Admissions said she was in C. T. scan. Emergency said she was in neuro ICU. I spent 45 minutes pacing through the 4-building complex before I found her (in Miller Dwan Burn Center ICU). We went to C. T. Scan to make sure there was no bleeding in her head. The scans were pretty normal - showing a big gap in her brain where tissue has been removed and some edema (swelling). Neither the Neurosurgeon on call nor the ICU Doctor seemed very concerned and assured us that it was expected and controllable by medication (Why the Hell didn't they control it before the seizure then?) The technician let me stay in the control room while the C. T. scan was being done and I got to look over the neurosurgeon's shoulder when he evaluated it. Things are much more relaxed on a Saturday around there. I asked the neurosurgeon about the specifics of the C. T. scan and he pointed out the various details of the scans. (Fascinating procedure - and I wish I'd never heard of it!)

Anyway - I went home last night and Kris was moved back to her room in Rehabilitation this afternoon and will be back in physical therapy tomorrow morning. Joy and I will be driving up to see her tomorrow. Joy and Kelly (and Macaden and Larissa) (daughter, son-in-law, and grandchildren - kind of) will be returning to Colorado on Wednesday, the same day that Kris' brother Dan will be arriving. Dan and I will be driving up on Friday for sure. I talked to her by phone this evening and she assures me that she never wants to go through that again. She is, however, feeling better - is alert and responsive. Before the seizure they had her walking with a cane.

Suffering in the heat - 90's here with no rain and humidity above 80% for more than a week. Kelly and I managed to put 500 bales of hay in the barn on Thurs and Fri and today we cleaned out the machine shop today for a class I'm giving next Saturday to some Master Gardeners on constructing trellises and plant stands out of copper pipe. Hopefully there will be no real news before next Friday.

Wednesday 07/13/2005 - 11:10

Today Kris will be transferred to Miller Dwan Inpatient Rehabilitation (still in Duluth). The Occupational Therapists have determined that she needs some intense work to improve that left side deficit before she can come home. We have no idea what the time frame is at this point but I suspect that we are looking at around a week. Everyone assures us that the problem is correctable but Kris is really frustrated. If that hadn't happened she probably would have been released today.

I am staying home for a few days to start the haymaking process. Some friends from Colorado are in town for a short time and have offered to help so if I can really hit it I can get a substantial start. Even cutting back on the big sheep by winter still means around 2000 bales. I've already turned down several custom haymaking jobs and with the house addition looming, I need all the time I can free up.

Sunday 07/10/2005 - 18:10

I'm writing this a day sooner that I thought. Kris was transferred from ICU to a regular room this afternoon. Rubber-legged and weaker on her left side, but much improved over yesterday. All of the invasive tubes, needles, and monitors are gone and she hopes she can get some sleep tonight. Last night there was no chance as she was right next to the ICU desk with all of its monitors, etc. The other person in her room was a woman that had been in a motorcycle accident who, when she wasn't moaning, was swearing at the nurses. Plus they apparently had some defective pulse-oxygen monitor pickups and so three of the monitors kept sounding alarms. She is now in a two-bed room but the other bed is currently unoccupied. St Mary's is good about that - they don't double up occupancy unless they need to.

Saturday 07/09/2005 - 21:15

Kris pulled through the surgery in good shape. We left here at 02:45 to check in at St. Mary's at 05:00. The neurosurgeon had a one-hour spinal surgery scheduled for 8:00 and Kris scheduled for 9:00. Everything was running on time until the hospital lost some of her blood work and then an accident victim was flown in by helicopter so she did not get into surgery until nearly noon. The surgeon gave me a report about 15:30 that Kris was in recovery, awake, talking and responding well. The preliminary biopsy showed some radiation damage, some dead tissue from the previous surgery, and what appears to be grade II tumor tissue. The samples will again be sent to Marshfield for analysis - but at this point it appears that the tumor has not gotten more malignant. The surgery excised all of the tumor that could be seen and wafers impregnated with a chemo-therapy drug (Gieadel sp?) were inserted in the tumor site. She is having headaches - but it seems to be more connected with sensitivity at the incision than internal pressure (which was the problem last time),

She finally got up to the Neuroscience Intensive Care Unit about 17:30 and I had a chance to talk to her. She is lucid but shows a slightly increased weakness in her left side. I decided to come home tonight as the weather here will be in the high 90's and we want to make sure the livestock is protected. That is not to say that Jim Franck and Janet Setterland, our saviors for taking care of things when we are gone, couldn't handle things - but Kris is paranoid about our animals and wanted me here. I will commute to to Duluth until she is released.

When I was leaving the hospital I ran into Kris' Oncologist and asked him what the time frame was for the Cyber-Knife treatments. He told me that they would probably be scheduled in about a month. It looks like Kris goes back on the Temodar as soon as she regains some of her strength.

As I sit here writing this, the dogs are huddling under my feet. Some idiot neighbors are shooting off some big-time fireworks until it almost sounds like one of the Jolly Green Giants pouring tracers onto the hill North of the entrance to Da Nang Harbor. You can buy some bodacious stuff on the Bad River Reservation.

Just for the record - the new car gets slightly better than 47 mpg for the round trip to Duluth. It is very disconcerting to have the engine stop when at a stop light though. It is also weird to have the gas mileage rise when going through a town (the car has an instantaneous gas mileage display)

Next post when Kris gets out of ICU (Mon?) unless something happens.

Friday 07/08/2005 - 21:00

We will be leaving about 02:45 tomorrow for Duluth for another surgery. We have to check in at St. Mary's at 05:00 and Kris will be in surgery by around 09:00. Dr. Callahan, the same neurosurgeon as before, will be performing the operation. We don't know right now, but will find out tomorrow, if they will be packing chemo-therapy drugs into the tumor site during the surgery. That has become standard procedure for grade 4 tumors and is becoming recognized as acceptable for grade 2-3 tumors (which is what Kris has). Dr. Callahan said that Kris will be in the hospital for "4 or 5 days" which is shorter than the last time. I guess that because the tumor is smaller and she hasn't been fighting the massive headaches, recovery will be quicker.

Down side is a greater risk of infection on a second operation. More tissue excised means a greater risk of left side vision loss and/or left side weakness. We don't have any word on a schedule after the surgery but it appears that the Cyber-Knife treatment is probable. We don't know when. Also the chemo-infusion carries a small increase in the possibility of infection. Dr. Callahan appears to be a very cautious person.

I'll update this when I get home after the surgery - either Sat night or Sun night depending on how things go and how functional I am.

Saturday 07/02/2005 - 09:30

Well - Kris is going to undergo another surgery at St. Mary's to remove as much of the new tumor as possible That will be followed by a treatment by Cyber Knife which is an improvement on the Gamma Knife process. That will be done in St. Paul. She will also have to go back on the oral chemotherapy drug Temozolomide. We will find out Tuesday when she will be scheduled for surgery. At least this tumor is much smaller than the first (Walnut sized as compared to half the size of my fist) so there is not the problem with pressure and severe headaches that were present the first time.

We were anticipating something like this and the 13-year old Oldsmobile Achiva was on its last legs (cracked windshield, inoperative driver's door window, inoperative A/C and severe frame rust in the rear at 137,000 miles) SO we just bought a 2005 Honda Civic Hybrid. Forty-five plus miles to the gallon and better gas mileage in town that on the highway. It is very disconcerting though to stop for a red light and have the engine shut off. We also just contacted a contractor about the remodeling that we've talked about for 15 years. There is an old Chinese curse - "May you live in interesting times".

Wednesday 06/29/2005 - 01:30

There is no good or easy way to say this. The tumor has come back. Kris had an MRI yesterday morning and we saw the oncologist in the afternoon. To verify the findings Kris went down for a second MRI with enhanced processing. The oncologist, Dr. Sande, is going to consult with the neurosurgeons, the radiation oncologist, and a specialist in St. Paul to completely cover the options and he will call us late Friday afternoon.

If the tumor is of the proper size, shape, and location, there is a possibility that she could be a candidate for a procedure called the Gamma Knife, a very focused, high-intensity computer controlled radiation process that focuses many bursts of radiation, coming from many directions, on the tumor. It is a one-day process with the closest facility in St. Paul. The alternative treatment (and probable co-treatment) is to go back on the chemotherapy drug. Kris is just regaining her appetite after the last round of that and that finished in the middle of March. She can not have generalized radiation ever again as she has reached the maximum limit.

I'll post again late Fri or Sat when we find out for sure what our options are.

Wednesday 04/27/2005 - 19:00

Well, we had the first follow-up MRI today and the news is good. They can't see anything that is inconsistent with what Kris has been through.  They administer a dye by IV to enhance the contrast of the images and the dye reacts with irradiated tissue in much the same manner as it does with a tumor.  So - they can't say that there is nothing there, but in the oncologist's experience, the report is good.  Kris is still having problems with almost continuous nausea which Dr. Sande says happens in some patients who have had radiation to the head.  As Kris has had the nausea decrease somewhat in the last two weeks, he says there is a good chance that she will continue improve in this area.  He does not want to start her back on the oral chemotherapy drug until the nausea is better.

We will be going back for another MRI in two months and see what is happening.  At that time Kris and the Dr. will decide if she needs to go back on the chemo drug one week per month.

What a day.  It started with some of the copper cold water joints that I soldered in the basement starting to leak (after two days of complete dryness).  Then the drive to Duluth was through a winter fairyland with everything draped in white while Bach played on the radio.  Early morning MRI followed by 4 hours to kill until the Dr's appointment. A tired drive home after all the snow had melted and then a quarter-mile from our road we see a big black lab with a red collar lying alongside the highway - mad dash home and there in the kitchen is our Millie (black lab with a red collar) grinning at us saying "Where have you guys been?"  so it's been a long, emotional, and tiring day.

Thursday 03/18/2005 - 11:00

Tuesday we drove up to Duluth to see Dr Sande, the Oncologist and Dr. Callahan, the neurosurgeon. The checkup by Dr. Callahan was pretty informal but he did tell Kris that she could drive a car again. As a matter of fact the only prohibition that he imposed was that she should never go swimming alone. The visit with Dr. Sande was also encouraging. He indicated that the nausea should diminish and that Kris' energy levels should start to increase. He will schedule a MRI in about six weeks because it takes that long for the physical effects from the radiation to go away. After the MRI, depending on the results, there is a possibility that Kris will go back on the chemo for one week per month indefinitely.

Kris does see a slight diminution in the nausea, but she is still not interested in food of any sort. She counts that as a mixed blessing, having lost about 10 Kilos so far. Her brother Dan is back in Va. and we're here in the far north bemoaning the continuation of winter. We have been lucky with the weather though. With all the driving that we've needed to do, we have not missed any appointments and have seldom needed to take the all-wheel-drive van. The snow should be almost gone in another month.

Tuesday 03/08/2005 - 13:00 - Today was the last radiation treatment and so ends the commuting to Woodruff. To date we have put in 4,888 miles on one vehicle or the other. I just looked in the box and there are only five more sets of chemo pills so Kris' last chemo treatment will be Saturday night. We have an appointment with Dr. Sande, the Oncologist, at St. Mary's / Duluth Clinic next Wednesday (the 16th) to do some checking up and to see what sort of monitoring plan he wants us to pursue. Now comes the real scary part. We're finishing the proactive part of the process and now we wait and watch.

Kris says that it will be a tie between the end of the chemo and the amount of nausea that she can tolerate. Right now nothing appeals to her and she's down to poached eggs and cereal for the most part. She has a prescription for a second anti-nausea drug which helps, and also helps her sleep, but she still has little energy. The effects of the two treatments are cumulative but hopefully should start to wear off shortly after the treatments have ended.

On a more positive note, Kris' brother Dan is in town for a week and Kris is spending some time with him. Dan is a Professor of Asian Art Studies at the University of Virginia and is one of the top people in his field. He will be here until this Saturday.

I'll update this next on the 16th when we should have more info and a plan.

Thursday 02/17/2005 - 17:45

Here's an update now that a couple of milestones have been reached. Tuesday Kris was half way through with the radiation treatments. Wednesday she finished tapering off the steroids she had to take to counter brain swelling. Her coordination is completely restored as best we can tell, and I have to set up one of her spinning wheels tomorrow. She is up and about, however she is not allowed to drive while on the chemo (which will continue for a week after the radiation). The combination of the two treatments have taken their toll on her hair and on her stamina, but she is optimistic and usually upbeat. Weekly testing indicates that her blood counts are holding up within normal ranges.

We have been very lucky with the weather for the five-days-a-week drives to Woodruff. Also, friends have done some volunteer driving which lets me get caught up on some things around home. I'm doing a third of the cooking, Kris a third, and the last third is heating up food from friends and my mother. The llamas find Kris' infrequent visits to the barn a novelty and they cluster around her, checking her out as if she was a stranger. She would like to be out in the barn more, but chills and tires easily and has to be careful about putting herself in situations where she could be knocked around and bruised or injured as the chemo drugs affect her blood's clotting ability. Her favorite llamas have their noses a little out of joint and feel she doesn't spend enough time with them, but they are coming to understand. The Shetlands are starting to get used to me, although if I make an unusual move they go dashing off like a school of wooly fish.

Friday 02/04/2005 - 22:30

We're settling in in for the long haul.  Kris had  radiation treatment #8 (of 30) today and took her 9th batch of chemo drugs (of  49).  She  is tolerating the chemotherapy drugs by judicious use of  anti-nausea drugs She is in good spirits and we went out to dinner tonight.  Last Wednesday we attended Theatre North's final dress rehearsal of  "I Love You, You're Perfect, Now Change" where I was taking pictures for the cast.  I hope the laughter didn't pressurize Kris' skull.  Deb Frost, a good friend who lives near Anchorage Alaska, is visiting until Monday.  Kris had a blood test today and everything is O. K. so far. They are checking to make sure that the chemo does not wipe out her immune system.  Deb, and her husband Jerry, have shaved their heads in support of Kris - well not shaved, but buzz cut.  Kris' hair is buzz-cut and is not yet falling out.  They warn us that the combination of radiation to the head and chemo pose a double whammy to the hair.  We're enjoying the warm (mid 40's high) weather and good driving conditions.  Up here that can change in a flash,

Wednesday 01/26/2005 - 23:30

We are back from Kris' first radiation treatment (1 of 30).  She is being treated at the Lakeland Center of the Marshfield Clinic in Woodruff WI, a 60 mile drive one way for us. She starts chemotherapy tomorrow with a relatively new oral drug named Temozolomide.  This drug will sensitize fast growing (cancerous) cells in the brain to radiation.  Because her tumor is an aggressive type the Oncologist's are treating this in the most aggressive manner possible. The drug is oral so at least she doesn't have to go into a hospital to have it administered.  On the down side, our local pharmacy, and the Saint Mary's Medical Center, are having a problem locating a source of the drug.  The dosage that our local pharmacy can obtain requires Kris to take eleven pills daily, whereas in a normal dosage she only would need three.

Kris has no problems with the radiation treatments,  Her Radiation Oncologist is Dr. Baruch Obama, a no-nonsense doctor from Manhattan whose hobby is photography (photography and X-ray?).  As the radiation is aimed at her head, she should have no side effects other than hair loss and possibly fatigue.  The chemotherapy can cause nausea and fatigue and she has to be monitored weekly for blood white cell count.

Kris's  good friend Deb Frost is flying in from Alaska to visit for a while.  Kris's brother Dan is planning to fly in from Virginia,  My mother is making soup and casseroles and neighbors and friends have been wonderful and supportive.  Also many of you out there on the internet have really raised her spirits with your good wishes and prayers. Hats are arriving from all directions.  Thank you!

Friday 01/21/05 - 17:30

The latest first.  We've just returned from Duluth where we met with the Oncologist and the Radiation Oncologist.  Kris has a anaplastic astrocytomia, mixed grade 3.  (Grade 1 is benign and grade 4 is the worst)  The removal of the primary tumor was essentially complete but this type of tumor has very small radiating branches which can not be handled by surgery. She will have to undergo 6 weeks of radiation along with chemotherapy. We do not have a schedule yet as the Oncologist, Dr. Sande, is checking to see if Kris qualifies for one of two possible clinical trials.  That will determine what kind of chemotherapy she will get and possibly where the radiation therapy will be administered.  We're hoping that radiation can be done at the Lakeland  Center of the Marshfield Clinic, located in Woodruff, WI.  This would be a commute of 50 miles one way rather than the 105 miles to Duluth MN.  Radiation is five days a week.  Chemo would be done either in Woodruff or in Ashland, WI. (a 40 mile commute).  We expect to get both treatments started within two weeks and the Doctors assure us that it is normal to wait a month after surgery to begin treatments.  Then we look forward to a lifetime of three month MRI scans to look for a reoccurrence.

On a positive note, our Physical Therapist kicked Kris out of his office.  (He is a personal friend of ours).  He said that Kris does not need organized physical or occupational therapy but does need to work on improving her balance.  He gave her (and us) some exercises to work on.  How many of you can do the grapevine?  She had the staples removed (40?) and finds it somewhat easier to find a comfortable position for her head, but the scalp is still tender back there.

Kris is doing well.  She is very positive and may be doing better than me at this juncture. She wants everyone to know that she is extremely grateful for the cards and the prayers and the good thoughts of all her friends.  She is amazed at the extensive support group which has formed for her.

Saturday - 01/15/05 - 20:15

We're holed up during the blast of arctic air which descended  Thursday evening.  Not too bad, minus 15 (actual - not wind chill).  Kris has not used her pain medication since she got home, just Tylenol.  The anticonvulsant and the steroids to reduce swelling in the brain do make her stomach upset so she still has to use medication to counteract the nausea.  There is some neurological deficit on her left side which makes it hard for her to type on the computer so please don't be offended if I am the one answering your Email for a while.  Also some tremors when she gets tired.  Kris is talking on the phone, probably too much, and she can get up and around the house to fix her own lunch, etc. She (and I) are getting used to the Demi Moore Dalai Lama hairdo.

Many thanks to the people who have helped as well as the many offers of help.  Some have offered to drive hundreds of miles just to assist.  There are many in Kris' church and neighbors (and my mother) who are doing cooking so I haven't had to do much except heat things up and make salads.  An especial thanks to Jim Franck who came in and did farm chores while I stayed in Duluth for Kris' surgery and to Kris Paige who drove up from Mosinee to house and dog sit.  I might mention that when we got home, I was concerned that the two house dogs might cause a problem for Kris when she entered the house.  So I put them out for a brief potty break and then brought them in and fed them while Kris waited in the van.  Then Kris came in and both dogs stopped eating to greet her.  If you know our dogs then you'll know how big a deal that was.  I am hoping for another week of gradual recovery and so I may not update this too regularly in the next five days.  Next Friday is when we should find out what is in store for us.

Thursday 01/13/05 - 20:15

Well we're home.  Kris is very tired and doesn't  want phone calls for the time being.  She gets the staples out and starts physical therapy here Monday.  Then Friday the 21st we are back in Duluth for appointments with the radiation therapist and the oncologist.  I had a slight hassle with the pharmacy and the Blue Cross - Blue Shield prescription plan.  BCBS just changed prescription providers and when the pharmacy punched in the numbers it came back that Kris was not covered.  Several phone calls later we got that all straightened out.  (Thank goodness - one of the meds was $945).  Then when we got to the discharge area I went to get the van.  As I drove up to the patient pick up area there was a tan pickup truck with a topper there first.  (I am driving a tan Chevy Astro van)  I looked around and saw a fellow about my age helping an elderly woman to the truck but Kris was nowhere to be seen.  Then I saw the man stop and do a double take.  Sure enough, Kris was not paying a lot of attention and the nurse had bundled her into the wrong vehicle.  I didn't really want to take the elderly woman home so we got a trade arranged.  Stopped in Ashland to get all the fixings for a nice fresh salad as Kris would kill for a decent green salad.  The hospital food was adequate - too salty for we who use no added salt, and mostly overcooked.  Now to hole up during tomorrow's weather warning of -40 wind chill.

Thursday 01/13/05 - 10:00

Kris is COMING HOME today!  Just got off the phone and will be leaving soon to pick her up.

Wednesday 01/12/05 - 19:30

I just got off the phone with Kris.  The weather was too rotten to attempt driving today with rain, sleet, freezing rain, and snow.  Kris reports that is is POSSIBLE that she could get released tomorrow.  It depends upon her Dr. and what kind of night she has.  She has been getting some pretty hard hitting pain medication and she is trying to get weaned off of that.  If she doesn't get released tomorrow the odds go up for Thursday and  way up for Friday.  She was visited by the oncologist and the radiation oncologist (two different people) today, but about all they can say is that we have to wait until after the pathology results come back from the Mayo Clinic.  I just installed a grab bar in the shower and am getting the house a little more ready for her.  The dogs miss her, as do I.  I hate to say it but the Llamas and sheep are getting fed regularly and don't seem in the least bit upset. (I must admit that that unruly band of Shetland ewes run in panic whenever they see me)

For those of you in the GCC family, I want to report that Tom and Ginger Kerr (and Nolan), who were in Duluth last weekend ,and who visited Kris, were rear-ended on the freeway driving home.  They are all fine but their van was totaled.

Tuesday 01/11/05 - 19:30

I just got back from Duluth.  Kris is much improved over yesterday.  She is taking medication to control the nausea and headaches. She had a CAT scan this morning and it looked good with not too much swelling.  Her vision was evaluated and seems to be fine.  She has a little physical perceptual deficit on her left side which will probably improve with time.  The P. T. had her up and down the hall and she got to take a shower and can navigate around her room by herself.  We now have an oncologist as well as a neurosurgeon. We would be extremely surprised if she does not need radiation therapy.  The only question is for how long?  At this point chemotherapy may not be indicated but we won't know anything for sure until the biopsy results get back from the Mayo Clinic.

We both want everyone to know how touched we are by the tremendous amount of support and encouragement that both of us have been given. Kris' room features 9 bouquets, 2 balloons, 1 angel, and cards are starting to arrive.  On the day before the surgery Kris received over 40 phone calls from New Zealand, Alaska, Florida, and points in between.  Friends and neighbors have offered to do farm chores or whatever we need.  I must admit that our two house dogs are feeling very neglected on account of Kris' absence and my commuting.

St. Mary's is a very supportive hospital and Kris has been visited by Physical Therapy, Occupational Therapy, and Chaplains.  Today we had an occupational therapist tell us about housing arrangements available during the period when the radiation therapy is administered and what arrangements are available in Duluth and in Marshfield.  Jan Stevens, the head neurological nurse, visits regularly to tell Kris what to expect next and what has happened as a result of tests, etc.

Monday 01/10/05 - 18:45

I just got a call from Dr. Callahan and then talked to Kris.  The seven pathologists at Saint Mary's could not agree on a diagnosis so all the records and samples will be sent to the Mayo Clinic.  This means that we will not have a pathology diagnosis for another week.  On the positive side, this means that the tumor is probably not a class 4 (aggressive).  Kris is having major headaches and has asked the switchboard to block all calls except from me.  She goes for a CAT scan tomorrow morning and they need to get the headaches under control.

Sunday 01/09/05

The finding of the brain tumor was abrupt.  Tuesday (01/04) Kris had the "Headache from Hell" - not something that had occurred before.  That night she started throwing up and early Wednesday morning she called me to take her into the Emergency Room at Grand View Hospital in Ironwood MI.  At the Emergency Room it was perceived to be a migraine headache until Kris complained of visual problems.  At this point the E. R. doctor said  "You've just earned yourself a CAT. scan".

The CAT. scan showed two possible lesions on the brain.  She was sent back for a second CAT. scan with contrast (however that works) which confirmed the original.  At that point the E. R. doctor came in and said "You have two lesions on your brain.  This is not a death sentence but you need to see someone about this now".  He gave us the closest choices,  Marquette, Saint Mary's in Duluth, and Wausau.  We both had good reports of Saint Mary's (and it was the closest) so we made the choice more on faith than on informed decision and the E. R. Doctor called Dr. Callahan, a  neurosurgeon on Saint Mary's staff.  Jim Callahan asked if we could admit her that day and we said "yes".   So home so I could quickly do farm chores and then off to Duluth.

We got to Saint Mary's about 4:30 P.M. and found the Registration Office. They already had the admitting information and so after a half hour filling out forms, Kris was on the way to Neuroscience.  She was immediately placed in a room and less than an hour later, technicians showed up to take her down to have a MRI scan.  The MRI took about an hour and, as she was being wheeled out, Dr. Callahan showed up and told her he would be up to see her in her room shortly. True to  his word, Dr Callahan showed up in the room, did a initial analysis, and took us both to the nurse's station to view the CAT scans and the MRI.  He said that one of the lesions was probably congenital (from birth) and of no concern but there was a fluid filled cyst and a tumor in the right parietal area near the optical and motor centers.  This needed to be removed immediately.  We agreed to surgery.

Thursday's surgery schedule was already filled, and they wanted a day to administer drugs to reduce the pressure in Kris' skull, so surgery was scheduled for 8:00 a.m. on Friday.  Late Thursday afternoon Kris's afternoon shift nurse, Becky, shaved Kris's head.  Becky's son is a Marine and Becky had to trim hair for her son and his buddies before they reported back to active duty after Christmas. Kris now has a "G.I.Jane" hairdo.

Friday morning at 6:30 they hauled Kris off to do a cranial mapping.  They did a CAT scan, fed it into a computer, and generated a three dimensional picture of the tumor together with reference points on Kris's skull.  Then they brought her into surgery, anesthetized her and immobilized her head. (We think by screwing a support into her skull in several points).  They then made a horseshoe incision through her scalp in the back (about 6 inches high and 3-1/2 inches wide) and removed a corresponding chunk of skull. The surgeon then used an ultrasound machine to visualize where he was and a rotary cutter with a suction attachment to remove the tumor and cyst. Then the piece of skull was replaced by using thin titanium plates and screws and the scalp was folded back in place and stapled together.  The operation took about four hours. Dr Callahan told me that the removal of the tumor was essentially complete and the operation was surgically successful. (We've still got a biopsy report coming up on Monday or Tuesday)

Kris was brought up to the Neuroscience Intensive Care Unit where she was closely monitored for any of the several negative after affects of neurosurgery.  She was lucky enough to have Julia as a day-shift nurse. You don't cross Julia!  Doctors don't cross Julia.  If I'm ever in a hospital, I want a nurse like Julia.  Actually Julia must have decided I was O. K. as she had me assist her in the removal of the drainage tubes from Kris's head. Kris was only in intensive care for 24 hours before they decided she was fit enough to go back in a regular room.

On Sunday the Physical Therapist showed up and had Kris walking up and down the hallway several times and up and down two flights of stairs.  Dr Callahan's partner who is doing weekend rounds seems to think that Kris has no appreciable loss of vision.  She is experiencing a slight disconnection in perception on her left side.  This very likely will return to normal as the brain is fairly adroit at reestablishing physical connections.