Happy Holidays!

Hi there everyone! I know that it's been a long time since I've written, but no news is good news as they say! Several people have reminded me that I haven't put a posting on the blog in about 6 weeks so I thought I'd give it a whirl. I have been living at home now since October 26 and things have been going very well. I have been keeping busy with doctor's appointments, walking in the park, re-organizing my closets and cupboards and getting ready for the holidays. I had a very nice Thanksgiving weekend with my family and Matt was able to come home for a few days. We went to San Francisco to do some shopping and we went to Napa to get our Christmas tree. This weekend both Matt and Jordan will be coming home from college for the holidays so our house will be pretty busy. I have been feeling really good lately and have got my strength and energy back to the point that I am still planning to return to school in January. My back has been doing pretty well - I have my good moments and bad moments - but mostly it has been steadily improving over the past few months. I am still in physical therapy and am also seeing a chiropractor, so hopefully my back will also be ready for me to start school in January as well! Until then, I plan to enjoy my holiday season completely and I wish everyone a very Merry Christmas and a Happy New Year!

Empty Nest

Empty Nest    by  Mother Myrth 

This is the other half of Karri's Home Sweet Home. Here we are, Claude and I with an empty nest for the first time since May. It is an adjustment for us as well as Karri. We had grown so accustomed to her presence in the house that I still wake up at night and think of things to talk to  her about in the morning. 

We are all thrilled about her being home. She has made such great progress. She is truly a amazing person. During this whole ordeal, and it was an ordeal, she has never complained but has saved her energy for healing. I am in awe of her. 

This has been a life altering experience for all of us. It would be impossible for me to explain it to anybody.  The feelings go too deep. But it has given me a much deeper appreciation of life and love and family. Maybe especially love because this is what allowed Karri to heal so well. The power of love is amazing. Claude and I are glad to have had this experience to love and cherish and take care of Karri . It is one we could have done without, but, oh well. As they say, someone had to do it and we were glad it was us. 

When I start missing Karri too much I just go and clean out a corner of the house. And Claude reminds me that although I have lost a daughter, I have gained a bathroom again.

And so it is with a grateful heart I thank my Father in Heaven for allowing us to go on as a complete family, and  I end this blog entry.

As a P.S. I must mention how much we enjoyed having Allie with us for 2 months. She is a typical 14 year old, in fact she gives new meaning to the term "teenager", but she is ours and we love her. Claude and Myrth 

Home Sweet Home

Yes, that is right - as of last Saturday, October 25, Allie and I are now living back home. It has been an interesting adjustment for me - I feel like this is where I need to be, but I miss my mom and dad and sister, not to mention my two boys Matt and Jordan who are away at school. I didn't get to see very much of them during the summer! On the plus side, I get to be home with Jerry and Brandon and Allie and get to start being a wife and mom again. I get frustrated by my back because it's not back to normal, but it is slowly getting better due to physical therapy and exercise - I can walk without the cane most of the time.
I finally finished my chemotherapy treatments two weeks ago and am now officially done - Woo Hoo! I also saw my surgeon today and he said that everything had healed very nicely inside and out. They will still be monitoring me through blood tests and occasional CT scans, so I guess it will never really be over, but for now I feel great! I'm just waiting for my hair to grow back and then I'll feel like a new woman!
I want to thank everyone again for your continued support and love and prayers. I have been so fortunate and blessed to be cared about and thought of by so many wonderful people. Love, Karri

Physical Therapy

Hi everyone - it's been a while since I've written on here, but you know the saying - No news is good news! Things are still going well for me - my stomach is totally back to normal since all the fluid disappeared and I am enjoying eating all the foods I missed during that few months. My blood tests are still turning up good - my cancer markers are back to the normal range and my red and white blood counts are normal as well. The only thing that continues to plague me is my back, and I recently found out why. I have started physical therapy as of last week and my therapist read my MRI that I had at the end of August and it showed not only degenerative arthritis, but a bulging disk that was affecting the nerves that run down both of my legs. The physical therapy has been in a swimming pool the first two times and it has really seemed to help me. I do a number of different water exercises for a whole hour and it really feels good, not to mention that my range of movement has been better and I am able to walk around more without my cane and without pain. I will have some therapy in their clinic where I'll be doing exercises out of the water starting next week - so I'm hoping that will help me even more. I've been able to be out and about and go lots of different places recently, and it really feels good. I want to thank everyone who's been out to visit me, or bring me gifts, or call me or send me cards - I really appreciate all the support from all you wonderful people out there! Take care,
Love, Karri

Speaking of remission....

Today was Karri's fifth chemo appointment - only one more to go!! It was a good meeting with her Nurse Practioner and we asked some more specific questions about what it means to be "in remission." Lina said that 'remission' is the more common usage in the field today - they don't speak of being 'cured' of cancer, particularly in cases, like Karri's, where it has spread beyond the area of origin. But remission is a good thing, and Lina pointed out that Karri looks good on paper as well as in person - her lab work shows the tumor markers down and her immune system not particularly suppressed from chemo - a little anemic is all.

Lina said that being in remission means the growth of the cancer is suppressed and the cancer is controlled – it doesn't appear to be lurking anywhere. However, it isn't possible to say with certainty that there aren’t some cancer cells somewhere in her body that the chemo didn't get, and they may very likely start to grow in the future. This could occur relatively soon, or not for many years. But for now there is no sign of such activity, and the oncologist will continue to do blood work and scans on Karri to monitor her health, not only in the region of the abdomen but also in nearby areas – bones (back/spine), liver, lungs etc. Theoretically the cancer might re-occur in any of these (or other) areas. The theory is that monitoring will pick it up early and they will then treat it as indicated, depending on where it is growing. For now, we celebrate Karri's continuing progress toward health. She goes in on Thursday for another epidural and evaluation of the situation with her back, which seems to be slowly but surely improving. Thanks as always, for your wonderful support, Kim and the rest of the gang.

Things Are Looking Up

Hi everybody - Karri here to give a current update. I had a Dr. appointment yesterday and it yielded some important news. He said my cancer is now in remission, but I still need to go through the next two chemo treatments. He also said it would probably come back someday, but they don't know when or how bad it will be. So I guess I will be getting checked and tested quite a bit for the next while, but I suppose that is to be expected in living with cancer. I am also now officially off the TPN - the liquid nutrition in a bag that was hooked up to me every night - and I am a free woman without a needle in my shoulder anymore. I still have the port under my skin to use for chemo, but that's about it. I feel really good these days - I can eat almost anything I want and I don't get sick at all anymore. The only problem is that I am still having a lot of back pain and I still need to use the cane to walk around, but I guess that's better than the walker. It feels very strange for me to have school be in session and not to be a part of it, but I will return someday when I am totally healthy and can handle the work and pressure. Until then - I am still staying at my parents house until my back gets better. Please feel free to comment or call or come and visit me anytime.
Love, Karri

Pain, Pain, Go Away

Yesterday Karri met with a pain management specialist. Although her back pain lessened last week, as she tried to become more mobile over the weekend, it increased again and so we were all looking forward to seeing what the doctor would have to say. Myrth and I went with her. We were favorably impressed and infuriated - because the doctor confirmed Karri's the diagnosis initially made (but later changed) in the hospital (disc impingement on nerves) and indicated that the most efficacious course of action would be a spinal epidural. We are delighted that Karri will get an epidural (on Thursday) but so angry that she wasn't simply given one two weeks ago in the hospital as she had specifically requested. The entire hospital experience was demoralizing in the extreme and visiting with Dr. DeLaney simply confirmed this. She also changed medications for something that is more specifically targeted to this kind of pain and intends to get Karri into a physical therapy practice once her pain is under more control, hopefully within a few weeks. All of this could and should have been done so much earlier - it seems so unfair that Karri has had to endure all of this pain so needlessly - and particularly since we were asking all the right questions all along. We are keeping our fingers crossed that the initial epidural will bring relief, but since she has been coping with this nerve damage for an extended period, it may take more than one epidural. However, we are cautiously optimistic that the doctor has Karri's case well in hand and will have additional remedies to use as needed. We would all like to get past this debilitating back pain so Karri's limited energy could be channeled into something more productive. Today she will try to go with Jerry to see Allie play in her first high school volleyball game if she is up to it. Love Kim

MDUSD Teachers Reading this Blog: How You Can Help -- Donate Sick Days to Karri

Kim and Karri reporting the GREAT news that Karri's back pain is, finally (and as mysteriously as it arrived), after two excruciating weeks, greatly diminished! Hooray!! She is way down on pain meds and she is moving about much more easily, and with greater body strength, although still using her trusty walker. We have high hopes for a continued recovery, and we hope the horrible swelling in her legs and ankles will be the next thing to go. She sees a physical therapist tomorrow and a back specialist on Monday.

In the meantime, Karri is down to almost no sick leave days left but the district has just approved her for catastrophic leave, thus clearing the way for fellow teachers in her bargaining unit to donate sick leave, if they so desire. To donate sick days to Karri, contact Denise Larkins, Employee/Employer Relations Specialist for the district, at 682-8000 x4136; larkinsd@mdusu.k12.ca.us. THANKS HUGELY in advance -Team Karri

Out of Hospital; Not yet ready to Dance the Limbo!

Karri came home to Myrth and Claude's on Saturday evening in time to be a part of Myrth's birthday celebration, which under the circumstances was rather bittersweet, not only due to Karri's weakened physical condition, but also as it is the time of year when grandchildren depart for college and there are more departing every year. The Sunday dinner ended with cakes and family blessings for those staying behind. Here is a brief look ahead at our week:

*the two youngest grandchildren, Karri's Allie and Randy's Jenna begin their second week of high school and their first week of early morning Seminary (religious instruction) at 7:00 am, at the church across the street from the high school. Both girls will be staying at Myrth and Claude's this week while Jerry takes Jordan and Randy and Colleen take Rachel and Kenny up to Rexburg to begin the school year at BYU-Idaho. Our week with the girls will be enlivened not only by Seminary and high school, but also by volleyball, soccer, band practice etc.
*Amidst this excitement, Karri will be trying to recover from chemo and from Jordan's departure. (We are thrilled for him but sad for us b/c he is such a great kid.) This is assuming she gets the go-ahead for chemo tomorrow - we hope the lab results will show her infection is gone and her blood counts are good. She is on a new round of pain meds, which make the back pain manageable, just barely - they sort of dull the agony. She is sleeping in a hospital bed, using a walker, and trying hard to build up her muscle tone and body strength, but she is clearly very weak, and it all happened so suddenly. We are all very perplexed that the hospital stay did so little to address the issue and hoping for a referral from her oncologist to a back specialist so we can get better answers and a comprehensive treatment program going. (Any answer would be better than the non-answers we got at the hospital.)
*On the Hooray side - the acites fluid build up seems to have ceased. Although Karri is very miserable with the back issues, we are all so grateful she isn't dealing with that as well. Given what the oncologist said previously about this fluid, we are assuming it has stopped due to a combination of chemo killing off the cancer cells which produced it and to Karri's improved diet helping her vascular system to absorb fluid more normally. Karri has almost no nausea these days and is able to eat small meals two or three times a day. I'll post a new report after her appointment for chemo tomorrow. Posted by Kim with regards to all on behalf of the family

Still in Limbo

Kim reporting today that Karri is still in the hospital. It has been a very intense week - working with the hospital staff has been quite challenging as they have changed frequently, and now with the Labor Day weekend upon us, many of the primary physicians are away. The hospital ward doctor, the pain management specialist and Karri's oncologist all have to agree to each new treatment plan and each of them have their own ideas about what is at the root of Karri's pain and how best to treat it. This is a kind way of saying that it has been a rather hellish week for Karri, and for Jerry, Myrth, Claude and I as we have tried to trouble shoot and bring the doctors together into some sort of consensus. In the meanwhile, Karri has contracted an e-coli infection and had blood transfusions on two different occasions. That she is still smiling when not in pain is a major testiment to her internal strength, stubborn perseverence, and determined focus on battling back from each new roadblock. As of last night she was in pain less frequently, and she was, with the help of pysical therapists, able to sit, stand, walk a short distance, and eat a meal while sitting in a chair. We believe that given this progress and given that most of her medications have now been changed to oral medication from injections, she will be discharged this weekend, probably with follow up physical therapy. We still have many unanswered questions, but if we can get her home again and she can continue, through rest, physical therapy, and the prescribed regime of medications to recover from the back spasms, we will take it and be grateful.

On the positive side, she is having less fluid build up over the past week - yay! They are taking only about half as much out a week. Also she is experiencing almost no nausea and is eating small meals three times a day! WOW!! She missed her chemo last week, but is scheduled to resume it next Tuesday and go back on the 21 day schedule between treatments. So...we are all hoping and planning on her having a much better week next week, even with the post-chemo blues (physical) that accompany the treatment. That may seem easy by comparison with this week. Bless you all for your continued concern and strong support - we all feel it with great gratitude.

Cancer is NOT for Sissies

Hi all, Kim again with the latest update. Myrth will add her thoughts again soon as well, but Karri remains at the hospital so she won't be able to get online for awhile yet. Today was a very exhausting one. Karri's pain from the slipped disc has continued unabated so they got a great deal more aggressive on pain management today. The result was more sedation along with a slight decrease in spasms and pain. Meantime, a physical therapist visited and evaluated her and decided that she was in no condition to try to sit or stand yet - she was either in too much pain or too loopy from pain meds to have the necessary balance. He was very patient and good with Karri who was as compliant as anyone could be who is lying flat on their back and susceptible to frequent knife sharp lower back spasms without warning. The hospital doctor explained that her lengthy period of enforced rest due to recovery from surgery and ongoing chemo has left her back muscles very vulnerable, hence the disc issues. But at the same time, the latest blood work reveals a serious drop in red blood cells - quite common with chemo. [This is a reversal from yesterday - turned out that they had gotten an erroneous lab report that her count was up, so they triple tested to verify.] So they decided to up her red blood cell count with a transfusion. At the same time, they put her on continuous drip of her pain med - result was not so good. She went into a drug induced stupor with labored and infrequent breathing - Myrth and Claude were with her when this happened and said it was pretty dramatic. So they quickly cut off her pain med drip and carted her off to Critical Care down the hall to keep a careful watch on her while they finished the transfusion. She will remain in CCU at least overnight while they watch her vital signs to become stable again and make sure nothing else is going on. Then they must continue to work to get her in less pain so her inflammation and nerve impingement from the disc can be ameliorated. They are calling in the pain management specialist to consult on how that might best be accomplished. She is likely looking at several more days hospitalization, a possible postponement of her next chemo treatment, and ongoing physical therapy as she recovers from the back issues. Thank heavens we can at least report that her tumor markers are all down - the CT scan revealed no new tumor tissue at all, and her blood work aside from the low hemoglobin (red blood count) is excellent. And her appetite is also picking up - nausea is NOT an issue at the moment - hooray! Just wish she wasn't so looped on her pains meds to appreciate these bits of good news! We are trying to be patient but it is a bit challenging just now. Thanks for keeping us in your thoughts and prayers.

Good news and not so good news

On the not so good news front(but could be worse)- Karri's MRI today showed that she has a 'slipped disc.' She is still having MANY back spasms and barely controlled pain, but we assume they'll kick up the meds now that they know what the situation is. No news yet on how long she'll be in the hospital, what their recommendations are for treating it etc. Stay tuned. On the better news side, her oncologist did tell us today that her tumor markers for the cancer are within normal range, hemoglobin, which had been low, is now back up in the normal range and the CT scans did not pick up any new tumor growth. We look for a bigger picture prognosis on what is ahead for Karri from him very soon after he has a chance to review the MRI in more detail. Meantime, she gingerly but patiently lies quite immobilized and hopes for a rapid recovery. We know you join us in wishing the same for her!

Another stint in the Hospital

Hi folks! Unfortunately, Karri's pain worsened overnight and after more tests and x-rays and another 8 hours in ER this afternoon, she was admitted this evening and will have an MRI tomorrow morning to see if they can figure out what all the back pain is. Unless she is lying flat and is completely immobilized, she has truly awful and very painful spasms - like nothing you've ever seen before, I promise you. The doctors don't think it is related to the cancer - it may be just her string of luck to have her back randomly go out on her. At any rate, she is on mega-painkillers to try and get it under control. We'll post more details as we know them.

27th Anniversary in ER

Well, ok, I'll tell you the story, but just promise that you won't try this for a good time! Karri, as she has noted below, has been feeling pretty good. (She is also pretty plucky - in a good week, she sees doctors, nurses, and other medical personnel no more than five times between blood work, IV needle change, getting her fluid drained, checking in with her oncology practice etc. Does this sound fun to you?)

At any rate, this was a busy week - she had a needle change and blood work on Monday, and on Tuesday she met with her Nurse Practioner, Lina, at Dr. Sherman's office and she also had fluid drained (another 7 liters!). Kudos to Claude who is most often the volunteer driver to and from her appointments. [As she gets closer and closer to another chemo treatment, it seems as if the fluid build up increases again - each chemo treatment 'kicks it' for a bit but so far only temporarily.]

On Tuesday night she had to drink "gunk" for a CT scan, which she had on Wednesday. She had been feeling a bit of hip/lower back pain for about 24 hours, and then on Wednesday evening, about 10pm, it began to intensify. By 11pm, it was the worst sort of back pain she could ever remember experiencing, and so once again, she and Jerry were off to the ER to see what the heck was going on. While they were grateful that it has been a couple of months since a late night trip to ER that didn't really help with the pain, the worry, or the fact that as midnight came on, they realized it was their 27th anniversary - ouch! Eventually the ER staff accessed her CT scan from earlier in the day and said whatever it was didn't look tumor-related (a relief!); they took X-rays and said it wasn't bone related. For REAL relief, they shot Karri up in her hip and lower back with her favorite IV pain killer (Dilaudid) and she began to feel splendid. At it wore down to 4AM (when they finally went home), Jerry probably wished they'd given him some also. Today (Thursday) she has been pretty miserable once the IV pain killers wore off. The pill substitutes don't work nearly as well, as you can imagine. After deciding that it didn't seem to matter what position she was in or what she was doing, she decided to join Myrth, Allie, Jenna and others to see "Sisterhood of the Traveling Paints 2," figuring it couldn't make things worse. When I (Kim) talked with her not long ago, Myrth had helped her shower, dug out Grandma Harriet's wheelchair to transport her (her back is so locked up that she can't easily move), and they were off. Characteristically, Myrth was doing everything humanly possible to make life easier for Karri, and Karri was being pragmatic through the pain and discomfort. "I'll take my pain meds round the clock and it will get better," she told me. Her Nurse Practioner speculates that it is a major muscle strain, possibly made worse by the fact that long needles are used in that part of the body for the abdominal taps she has regularly and by the procedure of the CT scan she had on Wednesday -- all of which can tend to aggravate her already sensitive spinal and abdominal regions. Now we are hoping that she is right that the meds will help, and we hope that will happen quickly and she can go back off them soon as they will be tough on her already fragile gastro system, aggravating her gastritis.

If things DO calm down, we're already scheduled to see Dr. Sherman for a meeting to hear more about the CT scan results on Monday afternoon, so we'll let you know what comes of that. And we are all keeping our fingers crossed that things DO calm down and she doesn't need any more visits to ER or anywhere else in hospital except medical imaging where she goes regularly every 5 days or so for her fluid drainage. Thanks, as ever, for your wonderful support. Love Team Karri

Things Have Been Going Pretty Well

Hey all you bloggers - sorry that it's been so long since I wrote. There hasn't been a lot of exciting news to report - the main thing that's happened is that I moved home. I still go down to my parents house a lot, but I am sleeping at my house now. I just got to the point where I missed being with Jerry and the kids all the time and since I've been feeling better - they don't have to worry about taking care of me. My parents certainly did their share of taking care of me when things were not so great! The only problem I really face now is that the fluid build-up in my abdomen still hasn't gone away, so I still have to go and have it drained every 5 days or so. It still causes nausea at times and prevents me from keeping food down, but luckily only about 1 or 2 days a week does this happen.
On a positive note, I was visited by some teachers from Cambridge and it really lifted my spirits. I had already been visited by Kathy O'Brien and Kathy Flores, and then last week Beth, Wendy and Mary came to see me one day and Colleen and Vicky came to see me the next day. It's really weird to not be getting ready to start school like everyone else, but at the same time I'm in no shape to be working full time! Hopefully by January my strength will come back and I can return to see all my friends at Cambridge.
Looking ahead - I have a CT scan on Wednesday, so I'll let you know the results of that as soon as I know. Thank you again to everyone who's been calling me, sending cards, visiting, or bringing meals in. I really appreciate what everyone is doing.
Love, Karri

3rd Chemo not so bad

Well, I had my 3rd chemo treatment last Tuesday and so far the after effects have not been so bad - definitely better than the previous two. I think I may have turned a little corner as far as treatment goes because I have been able to eat and keep food down for a whole week now! This is probably due to the fact that the fluid build-up in my stomach has been a lot less - which is what the chemo was supposed to take care of all along! I have been taking it easy this week because I've been extra tired, but tonight Jerry and I are going out to another movie, and I'm going to my 2nd A's game on Tuesday night - so wish us luck! I want to say a BIG Thank You to everybody in Jerry's BNI morning networking group for all the wonderful gifts and cards you've been sending me. I don't even know most of you and you've shown me such kindness and support - I really appreciate it. I'm also loving hearing comments from a lot of you on this blog - Keep it up! Love, Karri

A Great Vacation!

Karri here, reporting on our fun in the sun. We had several good, sunny days at the beach where those who went in the water said the waves were great!. I couldn't go in the water, but I could certainly sit in a beach chair(with my new scarf and hat) and read my book. We went on a long bike ride one morning and Jerry and I just got a bicycle for two and then I kept my feet up and he did all the pedaling! We managed to stay with the group the whole time. We rented a transport chair, which is a scaled down version of a wheelchair, and Jerry pushed me along the strand with the group for our morning and evening walks. The transport chair worked really well at Disneyland also - helping us to get in quickly on many rides without a wait. I rode a lot of rides at Disneyland, but by late in the day I'd hit my limit. Jerry, my dad and I drove back to our hotel after dinner and I slept extra good that night. We also went to dinner at Cheesecake Factory - all 20 something of us - on our last night there and I was actually able to find something I could eat on the menu! It was a fun end to a fun week. The only not-so-fun part was that my sister and I had to spend the better part of a day at a local hospital getting the ever-present fluid drained from my abdomen. They took out 7 liters again - where does this liquid come from? Hopefully the chemo treatment I'm having on Tuesday will take care of it once and for all! Well campers, that's about all on our vacation - next time I'll fill you in on exciting details of my "Chemo week".

Dateline Hermosa Beach: Fun in the Sun

Hi Friends,
Oh the bliss of being away from the world for a week! We haven't even had computer access - and we haven't missed it! We've had wonderful weather and we've been busy enjoying it!! Karri has hung in there, determined not to miss a single moment of the good times whenever possible. She has felt pretty good, and she has loved the time with family on the beach and on vacation OUTINGS, especially considering that she goes in for chemo treatment #3 next week. She will post more details about our vacation and we'll put up some "show and tell" pictures once we get home this weekend. Thanks for all your love, prayers, and continued good wishes! Love from "Team Karri"

Vacation Time!

Hi everyone, Karri here to apologize for not writing in so long. I had my 2nd chemo treatment last week and haven't been feeling very well and there was no real news to report. I've had the usual nausea and trouble eating and keeping things down, but now it all seems much better. The fluid build up in my abdomen got to be so much that when they drained it at the hospital they took out 7 liters of fluid! That is almost as much as 2 gallons of fluid that was drained out of me at one time! The chemo is supposed to take care of the fluid build up, but so far it hasn't so I'm a regular at the hospital to have the draining procedure done.
This coming Saturday, 7/26, we are leaving on a family vacation to go and stay at the beach in So. Cal. where we go every summer. The whole extended family is going so it will be very fun and nice and relaxing. I only have to have my TPN bag (nutrition) on for 12 hours a day so I will be a free woman most of my waking hours. Carrying the TPN bag around isn't very much fun - it's like a lightweight backpack. Since this will be the 3rd week after chemo I should be feeling my best and have a great time. Wish me luck - I'll write again when I'm down there to keep everyone posted on my condition. Thank you again for all your prayers and love and support.

Many hands, many hearts = many blessings

Karri, Jerry, Claude, Myrth and I (Kim) often wonder how people cope with cancer who don't have a strong support team. Cancer is NO walk in the park, as they say, and those of us who are a part of Karri's team 24/7 are so grateful to all of you for your invaluable support. We hope that you know how much you have blessed our lives with every kind thought and every action you have taken to support Karri in this tremendous challenge. Every thought, every prayer, every phone call, every blog comment, every card, every meal....each and every one means SO MUCH and enhances our well-being enormously as our days and nights are filled to the brim juggling all the mundane details of our lives and that of Karri's family as well as trying to stay on top of seemingly endless tasks associated with cancer management. These include helping Karri with all of her daily needs, many of which require more energy than she has available now as she continues recovering from surgery and living with chemotherapy. On any given day we are assisting her with showers, laundry, special meals (and wishing she could keep them down), administering IV nutrition and a wide range of medications (just keeping them renewed seems full time!), wound care, doctor's visits, spending time helping keep her spirits up since her activities are so limited .... etc.

Yesterday Karri had her second chemo treatment. She had a couple of pretty good weeks prior to this and we are in high hopes that she will have the same result this time around - but week one after chemo treatment is pretty rough - and she is having lots of the unpleasant "side effects." As I look over now at Karri and Jerry, both of whom are napping in matching recliners while "watching TV," I'm reminded once again how completely, utterly, mind-numbing, and bone-exhausting cancer is on every level. (On any given evening it might also be Claude or Myrth nodding off next to Karri with the same kind of utter fatigue temporarily catching up with them.)

Looking ahead, however, we are energized by the prospect of our annual family vacation - off this summer to Hermosa Beach at the end of the month. We've tried to time the chemo so that Karri will be at her healthiest week in the chemo cycle in order to enjoy it as much as possible. We are beginning to have her IV nutrition delivered over 18 hours instead of 24 each day so that she will be able to be off all her machines for at least a part of each day during our trip -- and, if all goes well and the chemo kicks in -- beyond that as well!

Thanks again for all that you do to help "Team Karri." We couldn't do it without your love, kindness and unfailing support!

No More Hair!

That's right everyone - I got my head shaved today since my hair was already falling out in clumps. I'm not completely bald yet, but it is pretty darn short! Now I have to keep something on my head to keep it warm all the time. It's hard to get used to, but will be much easier to take care of. On the plus side - I had two outings this week - first I went to the Oakland A's game and firework show on Friday night with the family and some people from the ward. I felt good the whole time and I had a great time. Yesterday Jerry and I went out on a double date this time with some friends of ours from Clayton. We went to see the movie "Hancock" and we really enjoyed it, and then we went to eat and I actually got some soup and ate it and kept it all down. In fact, I'm keeping a lot more down these days, so hopefully I can go off my other machine sometime soon. Keep up all the wonderful support and prayers. We love you!

Woo Hoo! No More Wound Vac!

Yes it is true that I no longer have to carry 2 annoying machines around all the time. I went to my doctor today and he decided that my wound was healed enough to be able to go without the Vac machine. I now just have gauze dressings and tape over it - and no machine to carry around! Can you tell that I'm happy? As far as the other annoying machine goes - I'm hopefully going to get that changed to only 12 hours a day, which would be mostly at night. My nausea has been so much better the past few days that I have actually been eating somethings and keeping it all down. If this lasts and improves then I can be rid of the other machine pretty soon also. Well, I just wanted to share my exciting news with everyone - I hope everyone is well and happy.
Love, Karri

Message from Mom

I am attempting to do a synopsis of Karri's progress since she returned to us from a rather
hellacious 2 weeks experience at the hospital in June. Her response to the Chemo, Hmmm? It is rather on the low end of "text book" as far as we can tell. She did very well the first 2 days and we were elated. We thought we had it made! Then she went through the days of achy bones and flu like symptoms. She was also nauseated a lot of the time. At the time it was painful to be around her and watch her suffer. However in her usual way, Karri met it head on and is fighting it all of the way.
A couple of positive things have happened. She is really not in pain anymore and is totally off her pain medications. And because her nausea was so great and so constant, the doctor prescribed a new drug for her, Marinol, which has pretty much taken care of her nausea and given her some appetite. However she is having difficulty keeping food down.We are going on a family vacation at the end of July and she is determined to go without the 2 machines she is connected to. Like I said, Karri is a fighter.
She is still retaining a lot of fluid in her abdomen and has to go get it drained a couple of times a week but further chemo should alleviate that problem. Today, on July 8, she is feeling good and smiling and joking and acting like a mom to the kids, that is to say, chattiing and giving advice.
Next Tuesday is her 2nd chemo treatment. I am very ambivalent about it. I am dreading it and looking forward to it. Hopefully it will help with her symptoms. When I look at how much progress she has made in the last 3 weeks I am thrilled. We will see what the next 3 weeks brings.. Love, Myrth

Karri & Jerry's First Date

This is Jerry writing. Karri must be slowly getting better as we were able to go see the Indiana Jones movie and out to eat Chinese food on Saturday afternoon. It was very fun to be able to go with Karri. It was our first outing like this in two months.
Karri has had a very rough two months so it was nice to see her smiling.
Also my children Brandon, Matt, Jordan, Allie and myself would like to THANK YOU all for the love and support you have shown us. Thanks again, Jerry.

Happy 6th of July Everyrone!

Karri here again, wishing everyone a belated 4th of July. We went up to Mt. Diablo in the morning to cook breakfast and I actually ate a pancake and some eggs! Of course I lost them again after hour, but it was still worth it. Also, yesterday Jerry and I had our first outing in about 2 month. We disconnected both of my machines so I was free-wheeling! We went to see the Indiana Jones Movie, very fun,and then to eat at an Asian place nearby. Of course, Jerry did most of the eating, I only had a little bit, but it was still a fun time for us to go out on our first date in a while. The main reason that I can do these things is because I'm on 2 new drugs that are really working well on my nausea - and sometimes helping me to keep my food down. Hopefully I can start getting out more and trying to live a semblance of a normal life - especially once I get rid of my machines, which should be in a few weeks. Thanks again for everyone's love and support- I'll write again soon.

I am Karri's Abdomen!

Dear blog readers,
You absolutely DO NOT want to be Karri's abdomen right now. I am a real mess - but I am told that I am going to improve over time with chemo. When the cancer was diagnosed and I had surgery, it was discovered that the tumor had grown from the endometrial lining both into my uterus and out into the wall of my abdomen. The inner organs were removed, including parts of the liver and diaphragm and the wall of my abdomen was scraped. (The good news is that the liver will re-generate.) However, cancer cells remained embedded in the lining of the abdominal wall and continue to wreck havoc in the abdominal and gastro systems. The most obvious effect is the ascites fluid that the cancer cells produce. In my weakened state, the fluid they produce is not absorbed and circulated through the cellular and vascular systems as it should be - so it fills up in my newly vacated abdominal spaces, pressing onto the remaining organs - lungs, stomach etc. This makes Karri feel wretched and she has trouble breathing. It is also one cause of her nausea.

But Karri's nausea has other factors as well. The first is the severe gastritis that is the result of all the antibiotics and other drugs Karri was given in the hospital to combat the wound infections from surgery. If you were me, you'd be able to see her poor esophagus - it is irritated big time! The second additional cause for her nausea is the rearrangement of her innards after surgery and the major distress it caused in her gastro-intestinal system, which by the way is second in sensitivity only to the nervous system. Ouch! Finally, Karri's nausea is also caused by the two chemo drugs she is being infused with. Yup, the same ones that are going to cause her hair loss and that make her feel like she has been hit by an 18 wheeler for at least the first week after chemo every 21 days.

Sooo...what is an abdomen to do? In my case, it takes a pharmacy to heal! I am taking antacid for the gastritis, a drug to increase the ability of my intestines to function properly (they don't like digesting too well anymore - they are having to be retrained to do their job), and no less than 5 anti-nausea medications. On good days, they keep the nausea to a dull roar, on bad days I lose whatever I eat or drink every few hours. But Karri isn't a quitter, so as her abdomen, I don't have any other choice but to try and fight back right along with her. The good news is that the first round of chemo really helped with a lot of the pain, so Karri isn't having to take pain meds routinely anymore, AND the two newest (pricey!) anti-nausea meds seem to be helping turn the corner on the nausea - keep your fingers crossed for all of us. (written by Kim :)

Graduation Party

I'm sorry that it's taken me so long to write this. This is Karri talking again and I just wanted to say how much I enjoyed going to the get-together on Sunay and seeing so many of my friends there to celebrate Jordan's graduation. It was so great of everyone to come and talk to me and share things with me. It was hard getting out of the house, but it was definitely worth it! Thanks Lyn for sharing your beautiful house with us! On other notes, we went wig shopping this week - what a kick! Wig people are definitely weird people, but I found one that I think will work, just don't laugh at me when you see me in it! Maybe I will prefer going bald, or wearing a hat, I don't know yet. I still have 2 weeks before I find out. Today I'm going to a support group meeting at the Wellness Center in Walnut Creek, so I'll probably talk about that at the next posting. You've all been so great about responding with comments - Keep it up!

Life goes on

Things are getting better, although very slowly. This is Karri talking again, and everything isn't always positive. I'm on medication round the clock, and trying to learn to eat again because I'm on intravenous nutrition all the time as well. I get very tired by just ordinary moving around, so I guess it sounds like I'm complaining an whining, but I really do feel like things are slowly turning around for the better. What really helps me feel better and brightens my day is when I get comments from all of you - my loved ones. I can't keep up with e-mailing everyone that I want to , so I'd love to hear from any and all of you either through blog comments - or you can still e-mail me as I check that every day. Thank you all for your wonderful support for me - keep it up!

Chemo is a mixed blessing

Karri here talking again about the chemo experience. It's really not all that it's cracked up to be. I felt good on Tuesday, the day of treatment, but it's kind of gone downhill since. I've had a lot of nausea and flu-like symptoms, so needless to say I haven't been doing much! Hopefully these symptoms will subside in the next few days and I should feel OK for the next 3 weeks until chemo resumes. Apparently, it is going to be a huge uphill battle, but then I knew that a long time ago. I want to thank everyone for your wonderful comments and care and concern for me. I love reading all your comments -so keep them coming!

Late Night “Food” Drama

Since Karri came home from the hospital last week, each night we have changed her liquid food sack, the 24 hour TPN (IV infused nutrition) that Karri is receiving. Since none of us have a bit of medical training, it has been a fairly intense process. We have saline syringes and needles and alcohol swabs and all kinds of exciting procedures we have to perform using them. We take the sack with the nutrition mix out of the refrigerator two hours before changing it so that it doesn’t chill her veins when it begins to pump through. We have a $5,000.00 pump that is all programmed to dispense the liquid at the rate that is right for Karri. Before hooking up to the pump and connecting the tubing to Karri’s IV port line, we add a small amount of insulin as well as various multivitamins and an antacid to the mix. We have to draw it up out of vials into the syringes – we are beginning to look pretty darn professional after just a few days! Nonetheless, the learning curve has been somewhat steep and we have had a few surprises, such as when we learned that we had accidentally added 10 times the right amount of insulin one evening. Happily we learned that before we hooked it up to Karri! That bag went out to the garbage and we prepared another.

Last night we had the sack of liquid all prepared, and we started to flush the line into her port with saline solution. They have us do that each time to be sure the line is clear. The saline didn’t inject as easily as we had remembered from previous evenings, but it did all infuse into the port line and so we hooked up the TPN from the pump to the port line and pushed “run” to start. A moment later Karri looked down to see that rather than having the milky liquid infuse into her port, she had blood from her port running down the line toward the TPN sack. PANIC! Everyone had the presence of mind to clamp off the tubing at each end of the line and then we looked at one another and at the blood caught in the tubing and wondered what on earth we were going to do. Of course we immediately called the 800 number help line, but it was already about 9:20 and Karri was already tired and feeling quite a bit of nausea and pain from chemo, which had arrived, just as promised, on the second day after.

To make a long story short, we finally had two nurses arrive at 11:25 to take care of the problem. It was a little surreal sitting around looking at all the paraphernalia and not having the slightest idea what had gone wrong, particularly as the hours ticked away. First they tried to talk us through ‘trouble-shooting’ on the phone, but we ran into a road block when we couldn’t detach the tubing from the port line as instructed. We all tried and it was stuck tight with some clotted blood. We felt rather sheepish that we couldn’t detach it as instructed, but when the nurses couldn’t do it either, we felt somewhat relieved that we hadn’t screwed it up through general incompetence. In the wee hours of the morning, they ended up changing the needle input on her port line before they were able to hook up the TPN – somehow it had become blocked. The nurses were wonderful, but we felt a little shell shocked. We couldn’t even remember anyone telling us that such a thing was a possibility we might run into. They change the needle routinely once a week and we assumed it would just run like clockwork in the interim. For some reason, this needle decided to quit working early, which is what we felt like doing ourselves. A bit bleary eyed and a bit giddy from the late hours and the drama of seeing Karri’s blood coming down the line, we all fell into bed about 1am. Although Karri still felt a lot of nausea, she and all of us slept deeply (the sleep of exhaustion, I suppose), leaving tomorrow to take care of itself, knowing only what we have so far learned in this cancer journey - we can't predict what it will bring.

1st Chemo down, 5 more to go!

This is Karri talking again, coming to you one day after my first chemo treatment. I have to say that it really wasn't that bad - I just made myself literally sick with worry the night before. It lasted about 4 hours of sitting in a big easy chair and having drugs pumped into me via an IV "port" that I have on my chest. It didn't hurt, and I passed the time by watching a movie on a portable DVD player (thanks to my niece Jenna) or by falling asleep. My darling husband Jerry stayed there with me the entire time to comfort me as he has so often done during this whole process. I did get a little bit nauseated during the chemo infusion and the nausea stayed with me all evening long. However, it is now the next day and I am feeling much better than before, so hopefully it will be a trend that I will continue to feel better and better all the time! One of the most immediate effects we've all noticed is the reduction of fluid in my legs, feet, and abdomen. We had been told this might happen and we are thrilled that it seems to have. We are crossing our fingers that it doesn't come back. One can only hope! One of the things about cancer is that you never know what you're going to get from one day to the next, so hope and prayers are about all we have.

A New Meaning of Enduring Through Faith

As I (Kim, Karri's sister) write this posting, Karri is undergoing her first chemotherapy treatment. Due to the nature of the drugs she is being treated with, it will be a long infusion time - at least four hours, and we'll post a blog entry later today to update you on how that went. But in the meantime I wanted to pay tribute to how Karri has endured and continues to endure a very challenging situation with dignity, grace, humor, and perseverance -- all based in an awe-inspiring faith commitment. Many of the so-called side effects of chemotherapy have already been making Karri's life miserable for well over a month. To see her handle this situation with unwavering faith and acceptance and stoicism is almost beyond our ability to comprehend. All of the qualities that I have always admired in Karri, including her incisive ability to size up the heart of the situation and respond with intelligence and compassion have been on exemplary display in this time period when she might just as easily have chosen to respond otherwise with self absorption and self pity. With gentle but witty irony she has met hellish developments head on, commenting wryly at each new turn, 'There is a new evil in my life,' and then tackling it. Enduring physical suffering in a way that defies our experience, always with a gritty determination not to let it get the best of her, she has been courageous and uncomplaining. Her caregivers, both family and professional have all been moved by her gratitude to them for their help and her cooperation as a patient, even in the hospital when separation from her family was an agony for her beyond all the physical suffering put together. During a family priesthood blessing last night Karri typically focused on the few silver linings that can be wrung from the hardest experience of her life, expressing gratitude for and to her family and for all the prayers from all of her many friends at church and school and in every area of her life. We love and appreciate all of you for your support, which continues to be very sustaining to her and to each of us as we struggle forward without knowing exactly what to expect at each new turning in the road.

Many, Many Thank-Yous

This is actually Karri talking now. I just wanted to say a million thanks to a lot of special people who have been so kind to my family and I. I won't name names because I'd probably leave someone out, but you all know who you are - who have made meals for our family,helped take care of my children, come to visit me or sent me cards or just called to see how I am. And what an amazing surprise it was to come home from the hospital and find such a beautiful quilt made just for me by some very special people. Thank you again, I know you all spent many hours of hard work and it turned out so lovely! I feel so special to have one of the famous quilts! Thanks again to everybody for helping us out in our time of need. I still appreciate all your good wishes, prayers and love as I begin Chemo this week. Love, Karri and The Robisons

Yippee, She's Home

This is the long awaited day. Karri is home with us again. We never dreamed she would spent 15 more days in the hospital. But we are so grateful to have her home with us. She also is happy to be here and content to sit in the recliner and just be with us.
We have all learned patience through this ordeal. We have also learned to be conscious of what is really important in our lives. This is by no means the end of the story. I still can't see the light at the end of the tunnel. but now I have faith that we will get there. The fasting and praying of Karri's congregation and our family on Monday June 16 was a real eye opener to me. I have never seen the power of the Lord in action as I did that day in Karri's behalf. It was not a good day for her but the next day was great and that's when Karri told me she thought she had "turned the corner." We have seen her improve a little each day. There are still ups and downs but she is moving forward.

Who would ever think that we would be anxious to start chemotherapy. But we are all ready for it because it seems to be the thing that will help her to begin healing at this time. She actually begins her chemo on Tuesday, June 24. PLease join us in praying for her again and always. Tune in late for more details.....Myrth- Mom

"I Feel Like I've Turned a Corner"

Dear friends,
With extremely grateful hearts we thank all those of you whose fasted on Karri's behalf yesterday. It was a very hard day for her - possibly one of her worst days since re-entering the hospital and she had a great deal of pain and nausea. As a result she was on a lot of medication and seemed somewhat discouraged at being caught in this same cycle yet again. Late in the day, however, she had another procedure to tap the abdominal fluid, or "ascites," as we've learned it is called. As it builds up it puts pressure on her internal organs, causing difficulty in breathing, discomfort, nausea, and back pain. She was able to talk with Jerry and the kids for a few minutes after they removed another 3 liters of liquid, and she even made a joke or two. This morning she was still in great pain, but the nausea had subsided and she was steadily more alert and interactive as the day progressed. She worked for a bit on a crossword puzzle with Myrth, surprised one of her doctors with a joke, and ate a few small bites several times throughout the day. (Up 'til now she has only been able to eat minuscule amounts of liquid food at most once a day.) In the mid-afternoon she told Myrth she felt like perhaps she had turned a corner, and our observations confirm this. We will continue to hope that each day brings additional recovery, but we have learned that good days can be followed by bad days, and that the ascites will continue to overflow her vascular system and cause distension, swelling, and severe discomfort for some time to come.

However, the medical team has agreed that if her signs of infection continue to abate she can come home on Friday for the weekend and begin chemotherapy as an outpatient early next week. Who knew we'd be so thrilled with this possibility, but after all that she has been through, chemo sounds like a step up! She will come home with a couple of medical attachments for the continued healing of her incision wounds, and for the administration of her IV nutrition. Claude, Myrth, Kim and Jerry have all been trained in how to properly administer this and we will have home care nurses checking up on her. The medical team hope and believe that chemo will bring relief to her nausea through severely curtailing the ability of the cancer cells to produce the 'ascites' as well aiding her body to recover its ability to properly absorb some of the excess fluid. Our prayers at this point are that she will be able to begin chemo as currently scheduled and that it will bring the hoped for results.

Thoughts from Mom

Thoughts from Mom,
People are always asking me these days how I am doing. My first response is that I doing just fine, then I remember with a heavy heart that I am not doing fine, that my world has been turned upside down and that I am in a tunnel and I can’t see the light at the end of the tunnel. That is pretty much where Claude and I are.
Yesterday, Sunday, was a good day. At church I was able to renew my spirit, and try to put things in proper perspective. I know in my heart of hearts that in this life we will not be called upon to endure a burden that we cannot bear. So the problem for me is how to prepare myself to bear this burden in order to be be of help and service to Karri and her family. That is what I am working towards.
In our family we have “circled the wagons.” We all trying to make sense of this disaster that has struck us and trying to find a way to deal with it. At first when Karri was home it was pretty simple,: watch over her, love her, watch movies with her, do crossword puzzles with her and hope that she was healing. That didn’t work.
Currently we are taking turns being at the hospital with her during the day. Kim, Claude, Jerry and I take turns so she won’t be alone. This last weekend we took the family to Benihana’s to celebrate Kenny and Jordan’s High School graduation. Her oldest son Brandon took over for us since he is highly allergic to shellfish, even just the odor and steam from the cooking.
We wash her hair, sit with her, make smoothies for her, try to encourage her to eat , watch her sleep which she does a lot due to her heavy medications for pain and nausea, and do crossword puzzles which she requests. It is her way of staying alert which she wants so badly to do. Karri is a fighter and right now she is fighting to understand her condition and do what she can to help herself. She is sharp and lucid when she is awake and her memory is excellent. Even when she is sleeping and something happens around her she listens and remembers. She doesn’t miss a thing. We are all amazed by her.
At this point the only other thing we can do is pray for her. I have tried to put this in the Lord’s hands. This is hard for me because it means letting go, and it is personal agony for me. But it the only thing left for me to do. Only He knows.

As Jerry says, Karri seems to have hit the 'reverse' lottery. Her drain from the abdominal cavity isn't working very well after the first evening it was placed and so she has fluid buildup with attendant nausea and pain again - thus more meds. This may mean she isn't stable enough to discharge early this week as we had hoped. Her oncologist and the hospital doctors continue to visit her daily to evaluate her condition. She is responding well to antibiotics and the infection seems close to being under control. A more comprehensive update will follow tomorrow after we meet with the discharge planning team.

Friday the 13th brings GOOD news!

As we are learning, things can change rapidly in Karri's world. Today the medical team agreed to try and work for her release early next week with the idea that she can continue to convalesce at home until her chemo start date. They appear to recognize that Karri will thrive emotionally in the home setting and they believe the infection is responding well enough to antibiotics that she can be successfully released with a portable home pump. Her nutritional profile is also improving with all that she has been receiving through IV lines at the hospital this past week and they think she can continue the TPN IV nutrition through an IV line from home as well. So far she is also responding well to the abdominal drain tube they placed yesterday. They have drained over 3 liters of fluid produced by the cancer cells since it was inserted yesterday and they hope that it won't build up so dramatically with this arrangement. If they can keep the fluid down, her nausea and pain should also decrease. Karri is very motivated to make this work if at all possible and so is the entire family. We will meet with the medical planning team at the hospital on Monday morning to learn the routine for her home cares needs beyond that which will be taken care of by home nurses. Keep your fingers crossed for her!

June 11 and 12: We meet the patient advocate

The best development of the past two days was the meeting with RN Pat Gild who will work within the system as Karri's nurse advocate. She will interface with the insurance company, with the hospital, with the doctors, and she will research questions we have about Karri's condition and share it with us. Her services are being paid for by Karri's insurance but she doesn't work for the insurance company. She interviewed Karri, Jerry, Claude and Myrth about Karri's history with her illness, gathering information. She seems to be a very caring person and listened to us patiently as she asked questions. She will have access to the hospital records and we hope she will help us to understand the medical aspects better as the doctors are often too busy to explain things to our satisfaction.

Karri's overall condition is unchanged, and it isn't great. In addition to around the clock medication for unexplained back pain, she has now begun to throw up blood. The doctors are working to figure these things out but there don't appear to be clear cut answers. They suspect that the blood is actually the easier thing to fix and don't appear to be alarmed by it even though it is vile looking. They call it "coffee grounds," if that gives you the idea. The blood is due to the fact that her gastro tract has been so abused and stressed by all she has been through that it is now exhibiting signs of tearing. She is taking strong doses of antacids to combat this and today she had less of it come up than yesterday so we hope that trend will continue. This isn't something you want to happen to you - her teeth and gums and tongue are black as a result. She is brushing vigorously several times a day to try to keep it under control. The doctors have also come up with a temporary solution to the problem of the abdominal fluid production and they hope it will relieve some of her nausea and pain - they have inserted a tube that will allow the nurses to drain off the fluid as it is produced. The tube was inserted this evening and immediately drained off close to a half gallon of fluid. They continue to culture it and have ruled out liver or gall bladder issues as well as bowel damage. They continue to believe it is caused by the production of the cancer cells. Dr. Edraki also finally opened up Karri's wound packing and drained an abscess that has been contributing to the infection. We are relieved this has been done but wish he had done so much earlier, and we hope there are no more pockets of infected fluid in the wound areas. He indicated that no further surgery is anticipated, for which we are all grateful.

We hope that Karri's condition will continue to improve over the next few days and that they can begin chemo as scheduled within the next 10 days. We'll try to document her daily routine in the next post. She remains plucky and determined despite the fact that she is quite exhausted and weakened by all of these medical complications and from taking the regime of medications needed to treat them all.

May 30, 2008 - June 10, 2008

June 10 - Continued pain, increased nausea, no answers yet

Today the infectious disease doctor told Karri he had reviewed the CAT scan they took last Thursday night when she was admitted and that he found quite a bit of inflammation all along the deep tissue in the open draining areas, particularly those that go quite deep. He confirmed his previous opinion that she didn’t get a long enough course of antibiotics last time in the hospital. After another 10 days of IV antibiotics, he says that her surgeon will need to re-culture these deep openings for infection and decide if oral pills are a necessary follow up. In general he is satisfied with the way the infection is responding – fever continues to be down and white blood cell count is back to normal. Incision area does not look inflamed along the surface.

The internal medicine doctor from the hospital next visited Karri. He does not recommend that she go home while she is taking the IV antibiotics for the next 10 days. Perhaps the doctor who will be making rounds for the next five days will evaluate it differently but he thinks she is not well enough to go home at this point. He is concerned that there may be too much variability of care with the home nurses for her condition at this point.

The two most critical things that have to happen for her to begin chemo as scheduled are:

1) Wound healing (clearing up infection) and 2) Good nutrition – and she isn’t getting enough. She is only getting about 1000 calories and she needs at least 2000 to be able to tolerate chemo. They will reluctantly begin supplementing with IV nutrients (TPN) because she needs to get stronger before going home. She is doing a great job at trying to eat and she should continue to get as much food nutrition as she can – this is just a boost until she is strong enough to get all she needs on her own.

The doctors have explained that the cancer cells remaining in Karri's body continue to put the fluid that is collecting in her abdomen. They have twice drained it off since she came into the hospital. The first time they collected a ½ gallon, and the second time half that much. The good news is that it isn't infected. However, the massive quantities of fluid she has been retaining are probably contributing both to the choking reflex she often has when eating or taking her meds orally as well as to her nausea because all of her internal organs (stomach, intestines etc.) are being squeezed out. The cancer cells will continue to produce fluid until chemo is started. She will begin to receive the TPN IV nutrition around the clock beginning at 8pm this evening.

Karri DOES NOT WANT TO STAY 10 MORE DAYS. She wants to come home! She is hoping that she can talk Dr. Sherman into supporting her in going home sooner. In the afternoon while waiting for him to come she was alert enough to eat some cottage cheese and fruit and work on a crossword puzzle with Myrth. Around 5:30 pm, however, she lost some of her lunch, as she tends to do at least once a day.

After that, her oncologist Dr. Sherman visited and asked Karri what are her major concerns. She said that she was most concerned with the increasing back pain and the possibility of having to stay in the hospital 10 more days.

His responses:

1) The pain we will handle with increasing medication and dosage. We don’t want to see you in pain. And we want to handle it as it rises, we don’t want it to get out of control. I’ll cut the necessary orders.

2) You have skilled nursing needs. You can’t get that at home right now. Home is not the goal. The goal is making you better – well enough that you don’t have to come back to the hospital. What does that look like? Nutritionally it means you have to be eating, drinking and having bowel movements like a normal person in order to tolerate chemo. We need to address the nausea and vomiting. We are going to try to do this with supplemental nutrition. In terms of antibiotics and your infection, you would need to have your order changed to accommodate a once a day home IV nurse in order to be able to come home, and I’m not sure if that is possible. Right now you are on a three times a day IV drip and that can’t be done at home.

He then went off to a consult with the other doctors to see if it was feasible to get Karri home sooner or not. Shortly after he left, Karri’s pain began to rise alarmingly as a result, she thought of the fluid drainage procedure the day before. It was much worse than it had been all day when she has been saying it was at a 4/5 level. Now it was an 8/9 but the doctor hadn’t cut the orders for more pain med before he headed down to the meeting. Karri endured excruciating pain for 30 minutes (sitting/pacing/trying to focus and meditate/deep breathing) while Kim, Kim and Jerry watched helplessly and the nurses paged all the doctors. Finally Dr. Sherman responded with a four fold increase in her pain med and 40 minutes after it began, she got some relief and conked out. The newest development is that Karri’s blood sugar is up and it needs to be regulated with insulin in order to start the supplemental nutrition. It will be checked every six hours for the next few days and she will receive regular insulin shots in the arm. Before Dr. Sherman left he ordered a CAT scan to see why the pain is so bad. It shouldn’t be that bad simply as a result of the fluid draining procedure. Jerry went down with her and then saw her safely off to sleep before heading home for the night. We hope tomorrow for results that shed some light and provide Karri with the opportunity for some relief.

While Karri was waiting for the CAT scan, Dr. Edraki, her surgeon paid her and Jerry a visit and expressed concern at Karri’s condition, particularly at her swollen and distended abdomen. He hopes that the CAT scan will not reveal anything that requires additional surgery but he fears that it may. We hope that will not prove to be the case as we cannot imagine how Karri can put up with that at this point.

June 9

The potential discharge plan didn’t work. Karri had a very tough night without the meds and threw up this morning. They recognize that she can’t be taken off the meds yet – and they aren’t comfortable releasing her from the hospital until they figure out how to best control the pain, which is essential to fighting the infection and to the continued healing of the wound. On the bright side, the wound care nurses today said the wounds were looking great – no redness or visible signs of infection. Also, Karri is feeling less nausea and seems able to eat more. And the doctors all seem to be working together to help address the entire complex range of issues she must get past in order to get healthy enough to begin her course of chemo, hopefully within the next couple of weeks. Her oncologist says he thinks that she’ll be in good enough shape to look ahead to chemo in another 10 days or so. Meanwhile they drained more fluid from her abdomen today with another LARGE needle. Ouch! Although we are all very sad that Karri couldn’t be released to be at Jordan’s graduation, she clearly needed to remain in the hospital and get stabilized. Kim and Kim stayed with her at the hospital during graduation and watched it with her live on Concord TV. She showed great determination to stay alert and enjoy the graduation as best she could, giving a running commentary about the kids who spoke and performed. We are all raised a huge cheer for Jordan as he crossed the stage, as well as for his cousin Kenny. After being up in a chair for the two hour program, Karri was exhausted and happily took her meds and went off to sleep.

June 8 - An old/new infection

Today the doctors told Karri they had isolated the infection. The fluid they collected from her abdomen is not growing bacteria however it is causing discomfort and a distended abdomen. The cultures they took from the wound sites do show infection, particularly the two deep ones that are continuing to drain a great deal. They are changing antibiotics now that they know exactly what the infection is, although the antibiotics they are giving her at least controlling the fever. They want to give her a longer course of treatment as this infection is related to the previous one, which they believe was never cured. Given her very compromised health condition in the past few weeks, we don’t dispute that at all. They want to knock it out this time for sure. It will be at least two weeks of IV antibiotics, although they hope not to keep Karri in the hospital the entire time. They hope to send her home with a portable IV. Karri says the nausea is under better control now so they are going to try and cut back on meds tonight to see if she has better energy and can go to Jordan’s graduation tomorrow.

June 6 - A mostly miserable month

Today it has been one month since her surgery and Karri is very unhappy about being in the hospital and very uncomfortable. The CAT scan did not reveal any pus pocket of infection in the abdomen but it did reveal a large collection of fluid that is not being drained by the wound vac. The white blood cell count from the blood tests DID reveal a probable infection, although no one was sure yet where it was. In a phone consult at 2am with Dr. Sherman, they decided to admit Karri and begin IV antibiotics. By 5am she was in a very nice room in the oncology ward and Jerry was, once again, on his way home for a few hours sleep before tackling a busy Friday.

She is also on IV for pain and nausea, as well as receiving potassium and various other fluids. The doctors have told her they will need 48 hours to culture the various samples to see where the infection is. She doesn’t want to stay in the hospital and she is particularly anxious to be discharged in time for Jordan’s high school graduation on Monday June 9^th. The doctors assure her they will try to make it happen if possible. She was visited daily throughout the weekend by Dr. Sherman, by the oncology ward doctor at the hospital and by the hospital infectious disease specialist. This is a good deal more attention than she received while in the Walnut Creek campus two weeks earlier and we are cautiously optimistic that this medical team will help her gain some ground. They have drained half a gallon of fluid from her abdomen! The problem is that they inserted a HUGE needle to do so and so that causes Karri additional pain. She is very groggy from all the meds and doses on and off both day and night. She isn’t awake long enough to eat much but when she does eat, she wants the fruit/protein smoothies that Claude and Kim concoct at home and bring to her in the hospital. A good choice given the alternative of hospital food! She is too weak from fighting the infection and from the other complications (suppressed appetite from wound recovery, production of cancer cells etc.) to care much – she just wants to feel better – she has tried so hard for so long to get on top of the nausea and pain and lethargy.

June 5 -- Back in the hospital again

Late this evening, Karri was admitted to hospital again. On the advice of the womb care nurse, we had begun to track Karri’s temperature. In the evening her temperature began to rise. At about 6:00 pm, it was 101.4 and we called Dr. Sherman’s office. He advised us to go the hospital ER at the Concord campus to ask for a CAT scan of her abdomen, which had been causing her considerable discomfort all week. Since the last hospital visit had been such a bust, Karri did not want to go back again. However, Dr. Sherman told us that he thought her infection was not resolved and that the CAT scan would help locate the infection if it was inside the abdomen. Since we had a good deal of confidence in Dr. Sherman, we encouraged Karri to take his advice. When her temperature rose to 102.4, she groaned and agreed to be admitted. Her temperature when we arrived at the hospital at 7:30 pm was 102.5. They quickly gave her 975 grams of Tylenol to begin to bring it down and gave her priority admittance. Within 30 minutes we had a bed in ER and a doctor taking her history shortly thereafter. Although we were discouraged to be looking at another hospital stay, we got a much better response time in the Concord ER, which was something to be cheerful about, unless you were Karri, who was very restless and feeling very uncomfortable. Fortunately, they were also able to use the port for some of the IV lines they put into Karri; however, for the CAT scan, they had to use veins in her arm or hand and there were a couple of false starts until they got a line in. She has been poked so much lately there just aren’t good places to poke.

June 4

Dr. Edraki opened up all four of the drainage holes and said they all looked good. He trimmed dead cells from a couple of them and cleaned the newer ones, saying the drainage looked pretty good and he didn’t think there was any infection. He told us that the most important danger to Karri’s health was not the chance of infection but any delay in the beginning of chemotherapy and advised an immediate start. He wasn’t yet ready to close any of the wounds, and in fact, opened up a fourth site that was collecting fluid under the skin. He told Karri to come in again in a week and he would see then if any of the sites were ready to close. That afternoon the case manager of the home care nurses came and dressed the wounds. She felt that the wounds needed to be cultured for infection and encouraged us to track Karri’s food intake and other vital signs daily.

June 3 - Permanent IV (Port) Placed

Despite the fact that Karri was not feeling at all well – in addition to the ongoing nausea, she had begun to suffer discomfort in the entire region of her abdomen and had trouble walking, showering, eating, sitting up for long periods -- Dr. Edraki felt that the permanent IV device (Port) should be placed on schedule. It was an exhausting day with blood work in the morning and a long wait beyond her scheduled 3:30 surgery time. We had left messages for Dr. Edraki about the fact that Karri wasn’t feeling well, but he was in surgery and apparently didn’t get them. When he finally came out to see us about 5:30, he promised to check on Karri’s condition before deciding whether or not to place the port. He came out at 7:00 pm and said the procedure had gone well and he would evaluate Karri’s overall condition in his office the next day. Sometime after 8:30 Karri was finally allowed to come out of recovery, drink some juice, and go home. We have already begun using the port and it has worked like a charm. It has been so helpful to Karri during this most recent hospitalization. We are happy that Dr. Edraki did place it on schedule.

May 30
Karri met with Dr. Sherman, the medical oncologist who would be in charge of her chemotherapy. He was extremely warm and personable and told Karri that he would be available to her around the clock (24/7). Tentative plans were made for a pre-chemo consult with his Physician’s Assistant the following week to outline the course of the chemo, which he did not want to begin until Karri was more recovered from the complications from her surgery. He told Karri that although she would lose her hair and be very exhausted as a result of chemo, she should not suffer nausea because they had some greatly improved drugs to treat it these days. Karri would be receiving chemotherapy in three week increments, but he assured her that it could be scheduled around our planned summer vacation to Hermosa Beach and the family plans to take Jordan up to BYU-Idaho at the end of the summer.