Karlene Clark, Hodgkin's Lymphoma

Inter-thoracic needle aspiration biopsy - needle the length of forearm inserted in chest 1-4 times to extract piece of tumor. I insisted on being knocked out.

Bone Marrow Biopsy - Serious pain in the ass! :) They insert needles the length of my forearm into the hip bones on my tushy!

Plasma Pheresis - Using a large catheter type needle, such as would be used for dialysis, they will insert it in either my leg or my neck several different times to collect my stem cells.

Palindrome Catheter - a two-way catheter that they use to collect my stem cells out of my blood. There are two tubes that hang above my right breast and on the inside it runs into a main artery beside my heart. (I think its interesting that no one here knows why its called a palindrome, since a palindrome is a funny phrasing thing that means the same spelled backward as forward - Ex. "Madam I'm Adam" or "radar")

Electrocardiogram - they show your boobies to the whole room, attach wires all over your chest, then take readings about your heart from it. :-)

Autologous Bone Marrow Transplant - a blood marrow transplant where you are your own donor. They affectionately call this a BMT around Mayo. Sounds like a sandwich.

White blood cells - these are the cells that fight infection. They wiped mine out with all the chemo, and then did the BMT, which puts the cells back in. I should bottom out around Thursday or Friday, get really sick, then the re-engraftment should be starting. They'll give me more neupogen shots at that point, to help my bone marrow produce more white cells. Par for the course, it'll hurt like hell in all my bones and joints, and my feet will likely swell up again. Hopefully this will be it then. I don't know if I can do this again.

Types of chemo I've now had - BEAM, ABVD, and ICE. I don't even know how to pronounce the words they stand for.

Update 5/14/09: I'm two and a half weeks into the radiation treatment. Several of the side effects that I was warned about have started to show up. The esophageal reflux is rearing its ugly head and so is the dry/sore mouth. We've mostly hit on the right cocktail of meds that are keeping it from being too bad, but the major side effects from the meds are dizziness and drowsiness!

Mouth pain sucks. Swallowing just about anything hurts. But I'm glad that doctor told me to get in all the calories I can. Dairy Queen shakes, look out!

Tomorrow I start the concentrated treatment on my neck and sternum. Those two spots are the only centers for the cancer this time.

Update 5/9/09: The antibiotic worked, but now I have a reflux problem. Talk about painful! Radiation continues to be fine, I don't feel anything from it yet. Its much better than chemo. I'm still working full time. Terry's birthday was this last week and we went out for supper that night. For the first time in years, I didn't make him a cake.

Update 4/30/09: Nearing the end of my first week of treatment and so far I haven't had many bad side effects from the radiation treatment. I did develop a high fever on Tuesday night that reappeared last night and we ended up going to the ER last night to find out if I've got an infection of some sort. They did an x-ray and blood draw and nothing really showed up so they gave me a fairly high strength antibiotic to neutralize anything that might be in there. I'll update more later!

Update 4/25/09: First off, the bad news: my cancer is back. Same place, in the lungs, right behind the sternum. One new spot in my neck on the right side.

The good news: They think I'm treatable with radiation this go round instead of another transplant. That means I can keep working, and I don't have to go to Rochester (sorry Kris! :P)

What's happening: Starting Monday April 27th, I will get 15 minutes of radiation a day, Monday-Friday, for 5 weeks. They will use something called External Beam Radiation Therapy (EBRT) to kill "Bob," as the doctor and I have named the tumor, and hope to kill him by using the highest dose of radiation allowed for people. Side effects will be mild, compared to chemo. I can expect hair loss in the area radiated only (no worries! its my chest, so no hair loss there!) so I might lose some of the hair at the very base of my neck, but nothing else.

I may lose some of my saliva glands, deal with reflux, have a little trouble swallowing food or breathing deeply. I can also expect burn marks where the lasers go into me.

I'm very positive about this treatment and like the doctor a lot! I don't feel sick yet, and I've been told that other than getting tired later in the treatment, I can continue living as normal. For more information about on how this is going to affect me, go here:

Update 7/7/08: This was my scheduled 100 day check up at the Mayo clinic in Rochester, MN. Terry and I have both been sleeping poorly the last week and a half, dreading the results. But... the results are in... I'm Cancer Free!!!!! I'm still not sure how to take it, but I think it will settle in more the further away we get from today. We've still got the trip home tomorrow, and we can't wait to get back. :) Thank you to everyone for keeping me in their thoughts and prayers!

Update 5/28/08: Almost an entire month of "normal." I've been working regularly M-W-F in the afternoons and working on my book on the off days. Well, my book and a variety of other projects. I've been doing pretty well health-wise, though my tummy's been bothering me the past couple of days. Dave was down again over Memorial Day weekend and the three of us went to Indiana Jones! The new theater in East Grand Forks is so nice, and the ticket prices aren't half bad. Now I'll step aside and let Terry "talk" for a minute or two.

Terry here, letting people know that I'm throwing a birthday party for Karlene the afternoon of June 7th. From 2 to 4pm that afternoon, friends and family are welcome to stop by, see her and wish her happy birthday.

Update 5/14/08: I know, I've been terrible about updating lately. But on the bright side, I have been busier lately, doing work three days a week and more things out and about. My energy is still slowly coming back, but I know I've got a while to go before I'm near what I was at before. Work has been a good motivator for me getting better - so much to do yet! We went back to Devil's Lake for Mother's Day to visit my mom, sister and brother-in-law. Even though it was a long day, it was nice to see that I could make the car trip to and from there, with a few hours of visiting in there to boot.

Update 5/5/08: Its been a few days, and I've been super busy! Friday was my first afternoon back and work, and it felt so good to be back at the Library! Friday night, Terry's friend Dave came down and we (Colin, Kalan, Dave, Terry and I) all went to the movie Iron Man. I liked it, and Terry really enjoyed it. Saturday evening I went back into work for a little while, which also felt good. Sunday we both pretty much took it easy, and today I was back at work again! I'll be working three afternoons a week for the next little while, and it feels good to be back at work.

Update 4/29/08: I had my meeting with Wilbur and Karen at the Library on Friday and I'll be starting back to work on May 2nd for 2 hours. For about the next two months, I'll be part time starting at 10 hours a week and building up from there. My Aunt Rita came down today and the both of us went out to lunch and a little shopping after. More signs of "normal" for me. This weekend, Terry's friend Dave will be coming down to go to the movies with a group of us and an early celebration for Terry's birthday.

Update 4/23/08: I'm a little on the tired side today. All the same, I've been setting small goals for myself every day, and I've been managing to usually accomplish them. It's never much; working on thank you cards, watering flowers, or even just picking up in one room. Some days, all I accomplish is making it upstairs and playing a little with Nisse before needing to lay down and rest on the couch. I'm doing more reading than stitching these days, too. The tingling in my hands got worse after this chemo. I've started cutting out pieces of fabric to make stuffed dragons as well. Slow going on my part, but it gives me something visual to see as "done" for the day.

I had hoped to start back to work on the 28th, like the doctor said I could, but I think I'm going to give it one more week. I'm still pretty shaky, and since it would only be four hours I'm allowed to work anyways, I might as well take the rest. The week after I plan to start back at 6 hours a week, going in Monday, Wed., and Friday for 2 hours each.

Update 4/21/08: Hi. We had a funeral this afternoon. Vicki was a leading warrior for us in her fight with cancer. After 10 years, she's fallen. Her funeral was beautifully done, ending as brightly as Vicki ever was, with everyone happily singing "Spirit in the Sky," complete with guitars and everything. It was extremely hard to get through, and Brittany, another leader for us, was something solid to hang on to at the very end. I can only hope I provided her some comfort, too. Vicki's family, I continue to think of you. Brittany, we're beating this thing. We're here in Vicki's memory, and further more: Warriors to the end! We aren't giving up. Not now.

Update 4/17/08: While I'm busy trying to get stronger, I found out this morning that this stupid cancer has taken a good warrior from us. As it hasn't been publicly shared, we wouldn't be right to list her name, but please spare a few moments of prayer for her family as they deal with this loss. I'm still getting stronger and have no intention of letting this thing win. With that in mind, Terry took me to Wal-Mart today and I bought all kinds of seeds and some bright yellow daffodils. I bought the daffodils in honor of the recent loss of our friend in cancer. She'd always loved bright things and spring, and I plan on putting those someplace I can be reminded of her.

Update 4/15/08: Wow, we're surprised to find out we actually have a peach carpet! I'm still sleeping a lot and shaky. Denyse should start giving me knitting lessons again now that I'm home so I don't get terribly bored here at home. Food doesn't taste very good, but broasted chicken and cherry kool-aid are my mainstays right now. My stomach has settled down some from the weekend and I'm feeling a tish bit better. Jolene and her sister came down to visit me a little earlier today and it was good to see them both. More updates to follow later on in the week.

Update 4/12/08: Terry here, updating for a very tired Karlene. We're both home and back in Grand Forks and made the trip back without concern. The weather wasn't really that terrible but not all that great yesterday and I'm glad we decided to leave when we did. I'll be working part time at work for the next two weeks starting Tuesday to make sure that Karlene doesn't accidentally trip or anything else crazy. She's doing ok today, but just feels a little under the weather. No fevers, but all in all feeling miserable. We suspect that its either a mild reaction to getting off the steroid that she'd been on or her body is ramping up to produce more white blood cells. If she still feels like dirt tomorrow, I'll likely contact the folks at Station 94 to see what they suggest.

To Karlene's friends and co-workers that helped get our house clean and ready for her to come home - a big thank you! The house looks great!

Update 4/9/08: We saw Dr. Porrata today and he still gave me the all-clear to go home! We're planning on leaving Rochester Friday during the day and staying overnight in Alexandria. Dr. Porrata is still saying how proud he is of my ability to regenerate my own body cells that he can count on one hand how many people have recovered from a BMT as quickly as I have. My palindrome catheter was removed this afternoon which I was awake for, not something I plan to repeat. On the upside, they let me keep it, so I can show everyone the oogey-gooey grossness that made me my own bionic woman! It was fairly uncomfortable but I'm one step closer to being done with everything. I'm under doctor's orders not to work for 2 weeks, then I can start back very part time.

Update 4/7/08: Terry here, updating for Karlene. She's been released from the hospital and is back to out patient status again as of this afternoon! Her white blood cell counts yesterday were 7.3 and 5.4 today. This was something we did expect, because Dr. Porrata said that her counts would fluctuate for the first couple of weeks after her engraftment. Also, it sounds like we're still going to be going home this weekend! That's right... we'll be back in Grand Forks on the 12th or 13th, as long as things continue as they have. She had a pretty busy day today, as one of the books we'd ordered arrived and we had to go to the Plummer building to take pictures for friends of ours. They have a scale version of the building built out of Lego! Pictures will be put up later on this week, don't fear.

Karlene's co-workers are nothing sort of phenomenal. Tomorrow, our carpets will be cleaned by someone that's handled cases of immuno-supressed people before and Thursday evening our house should be back in order. They've already gone through and cleaned up the house. I can't wait to see and smell our clean home again! Its hard to believe that 6 weeks have gone by already. Thank you everyone for the love and support you've shown her through this. Keep those happy thoughts and prayers going, since we won't know for sure until we come back down for her 100 day check up if she's all clear.

Update 4/5/08: Chicklets are good! Terry got some for me out of a little vending machine today while I was out on pass. They're helping me produce saliva and they actually have a taste (that tastes good!)! My white blood cell counts went from 1.2 yesterday to 3.2 today, which according to them is phenomenal. Terry took me on an outing today to get more thread for my stitching, and we found some really neat daggers. We're hoping to use them for when we go larping in PA with our friends Jaime and John or when we get back into the SCA. They were really well made and very nice looking. Food still doesn't taste the best, and sometimes makes me more than a little nauseous, but I'm going to keep trying! While I was on my outing, I actually had TWO cheese curds! Two whole cheese curds! They didn't taste the greatest, but I had two of them. ☺ It sounds like I'm going to be in the hospital for a couple of more days yet, but that hasn't changed our go-home plan. I hate the "wait and see" approach that Mayo seems to have for EVERYTHING. In regards to that, during our outing, I found a t-shirt that says: "Rochester, MN, 9 out of 10 patients recommend it." I had to buy it, because guess who the 10th patient. ☺

I finished the cross stitch pattern for one of my co-worker/friend and I found an old magazine another co-worker had given a while back with lots of small projects. So it looks like during my wait time down here I'll be doing projects that will be Christmas presents for a lot of you!

Update 4/3/08: I've been running one fever a night, on average. Last night it spiked at 104 F! I got pretty scared and had Terry come and sit with me because I know he doesn't mind coming up to the hospital for me. It was close to 8:00 am before it was back to a regular temperature. My memory is even worse than it was before, but the doctors said its very short term and its hardly a choice between no pain and being 'gronked', or just suffering.

The letters that you guys have sent to me as to what I mean to you as been a relief on the really bad days. I'll sit and read the letters over and over. I'm seriously hoping that Porrata isn't jerking my chain about getting home in just a few short weeks. I've got a long way to get to that point, because my white counts only just started coming up today. I'm still having trouble getting food without barfing it up. Keep those thoughts and letters coming, you're a huge help!

Update 4/1/08: They said that the fevers would come and it hit last night about 10pm, spiking out at 102.8 F. The nurses were all very nice trying to make me comfortable while going through the fever process. They also warned about diarrhea and boy did it hit last night. Its embarrassing to say I actually messed my bed. I had another fever this morning, so there were extra lab draws and X-rays just to make sure there's no bacterial infection or that I haven't caught a virus. Because of the fever spikes and the diarrhea, I was given four bags of platelets. This afternoon I gave in and rode in the wheelchair so we could go to Barnes and Noble, which is all connected to the Mayo buildings. Its located in a renovated theater: two floors of very cool castle themes. It was good to get out, and I found a really cool book about angels.

Update 3/31/08: Dr. Barracuda was through this morning and he stopped to see me. He had news so exciting, he almost wet himself! With a big grin, he said "Karlene, you're looking so well, that you may be able to go home in two weeks!" I didn't believe him and asked if he was jerking my chain. But apparently since I seem to have missed the critical fever stage, I should be going uphill from this point. We won't know for sure until we come back for the 100 day check up if all this was worth it and I'm in remission. TWO WEEKS!! *dances* I'll try even harder to get well with this goal in sight. Solid foods are still difficult and I have trouble with burning acid reflux, which they say is normal.

I can't wait to get home to see my bird and go to work. I have a feeling that I'm going to do something my mom's little friend Tristan had done after spending a week with us: She walked around the house touching everything, saying "my chair", "my bathrobe", "my leaf" and so on. I can finally understand the relief she felt and can't wait to get back into the middle of my things.

Update 3/29/08: Terry updating on behalf of Karlene. Yesterday she wasn't feeling terrifically good, and after her throwing up no less than 10 times before 5pm, we decided to get her up to Station 94 to have her at the very least looked at. The doctor that was on duty at the time figured it was best to admit her and start doing some IV fluids (and to swap over a good deal of her oral meds to IV ones) simply because her nausea couldn't be controlled and her pain wasn't managed well with the oral stuff. Both of us strongly suspect that part of the reason she's been so nauseas the last couple of days is the sheer quantity of pills being dumped into her system on a daily basis. I think we counted 20(!!!) pills that she has to take daily. Go chemo/transplant. She's doing a little better tonight, and was able to eat a hard shell taco and a cherry misty float. Both of which stayed down, and they seemed pretty pleased with that. They also think she should stay in for another 3-5 days yet, which may get her into the engraftment stage. We're really hoping so.

Update 3/27/08: Brief update for today. I woke up and felt tired, achy and slightly chilled. The chilled feeling went away but the tired and achiness have remained. They gave me a phentonal patch to help with the body aches. I ended up going back to outpatient this afternoon for IV fluids (I was really low on potassium). 4 hours later... we stopped at Dairy Queen and Taco Johns for supper tonight. I had a blizzard and a hard shell taco. Both things tasted like slime, but at least they went down and it was some more protein.

Update 3/26/08: We'll start this off with a link to several of the pictures from Quarry Hill. Click here for them. :) I never knew my boss was a dinosaur! But there it is: Stan the T-rex!

I threw away the certificate. How stupid. And all the nurses carrying on about "happy birthday" when it was just another stupid procedure to go through, not a birthday. I was in this morning for my first outpatient visit. How do I feel? Like crap. Am I eating? Not well. Everything, even the tacos, taste terrible. Even water. I have about 20 pills I need to take every day; everything from penicillin to an anti-fungal drug. So many pills, they make a meal for breakfast and at bedtime. They also keep me very nauseous. Luckily, once I "get sick" with a fever or chills or whatever, some of the drugs will get to be stopped. So for now, I'm just biding my time to "get sick" so I can get it over with. I'm horribly homesick, I cry a lot, and I miss my bird and my work. I have a hard time finding anything to get excited about, or look forward to. At least I don't smell so much like creamed corn now (so they tell me).

All the same, if I do want to go out, I have to put this stupid mask on to prevent infections, which just encourages people to stare at the "freak." It's also a bitch to breath in, and it fogs my glasses up. I hate that I have to go through cancer again, I hate that I'm away from home, and I hate this stupid town and all the medical freaks in it. I just really really really want to bottom out my white counts, get sick and start getting better. I want to go home!!!

Update 3/24/08: Easter has come and gone and I got my BMT this morning. The only side effects I had was a little bit of nausea (still am, a little even now), a brief headache and some hot flashes as they were pushing the stem cells back into me. 7 tubes! But I guess that's about average for a BMT patient. And I also put forth the gentle aroma of creamed corn. Its a good thing that Terry likes creamed corn, because he can smell it in the room. Of course, I can't smell it at all and they said that's normal. Breads are starting to taste like glue for me, so that's going to cut back on the kinds of things I can eat. Tacos and broasted chicken, look out! Oh, and I got a certificate to go with my transplant. yay?

Update 3/22/08: Today, we got to go to Quarry Hill to check out the "Creatures of the Deep" exhibit, where they had fossils of different prehistoric reptiles. They had a HUGE turtle and a couple of other things in addition to all sorts of things preserved in stone. We got some pretty good pictures and I'll have Terry put them up here, maybe. It was fun to get out of the hospital, go back to the freak house for lunch and spend the afternoon on an outing. There was a little girl at Quarry Hill that asked about the mask I was wearing. When I told her why, she told me that her older sister had died from cancer. The older sister was only 12 and the little girl couldn't have been more than 9 years old. What do you say to something like that? It was heartbreaking, to say the least. Tomorrow is Easter, and we're pretty much going to be stuck here, on account of not being able to go out on such a busy day to a restaurant. We're thinking of ordering pizza and just eating here. I'm feeling better than I did on Thursday, but only moderately so. The shot they gave me to prevent "girl" troubles... didn't work. So now I've got cramps to deal with on top of all this. Not exactly what I would call good times.

Update 3/20/08: So far, the chemotherapy hasn't been too bad. The drug on Tuesday gave me a really nasty headache, very much like having a hangover. The drugs on Wednesday through Saturday are going to be the same, and I should only have a little bit of nausea to go with that. Today I just don't feel right - I've been a lot of sleepy and overall tired. I guess that goes with the territory. One of the nurses that was on duty the other night is a bird lover too - she has an African Congo Grey! Though it was really early in the morning, it was fun to talk about bird antics and what they do. I also got 2 units of blood today due to the fluids I've been getting thinning out the red blood cells in my body, so I should start feeling better tomorrow. That'd be right on time, as Terry is planning on taking me out to Quarry Hill, a natural museum of sorts with dinosaurs! I hope that I can do that this weekend before I start to feel really crappy.

Update 3/17/08: Apparently I'm some sort of super-medicinal-freak or something. We had to meet with three people today: the nurse coordinator, the physician's assistant, and the doctor. Each of them came in with this big grin and are all "You should be so PROUD! You made almost 6 million in three days!" I wasn't getting it. I was thinking, "that was all the doing of your MEDICATIONS that made that many," but the doctor explained it that he could count on his hands how many times that actually happens. Most of the time he says he's lucky if they can get 4 million or a little better in a WEEK of collection. So yey! I'm a freak! He says this is a good thing though, as it means I'll likely engraft sooner. Ah crap... another medical term! :P

Engraftment is what they call the period of reintroducing the white blood cells to my system and them settling back into my bone marrow. That will be next week. Starting tomorrow, I go into the hospital for chemotherapy. I'll get doses every day through Sunday, and we plan on having my own "resurrection" on Easter Monday, when they do the "engraftment." They tell me that THAT is the point to plan on watching to be sick. I'll have no protection until the new cells kick in and start protecting me.

The other laugh we had today was when the nurse coordinator says to us: "For the next several months, be careful about being around places that are dusty, dirty, or may have mold or mildew." HELLO???? Just about every library I've ever been in is dusty or dirty!!! That kind of caught her off guard, but then she said that that's "normal" dusty and to just be careful when I start back.

I also haven't said it yet, but thank you to everyone that's contributed to helping us in this. I do plan on sending thank you cards, but right now I'm struggling just to get through things! The supplies, the time, the money, the cards... there's no way I could do this without all of you. Please keep it up! Especially the cards and letter! (see 2/27/08 for the Rochester address) We'll be here at least another 3 -5 weeks. I'm still shooting for my main goal to be (how sad is this???) to go back to work at least part time by my birthday. Barring any weird diseases or anything, they think with my freakish count levels, that it's entirely do-able for me to obtain that goal! Yey!

Update 3/13/08: Terry here with some fantastic news tonight! At Karlene's collection today, she collected 1.8 million for a grand total of 5.88 million! That means that we've finished with collections and on Tuesday the 17th she starts chemotherapy. On the 24th she'll have her infusion and from there on out its recovery! Also, Karlene has been given a bit of a reprieve from clinic visits. She doesn't have anything tomorrow or Saturday and Sunday only has a blood draw. Also, please keep up with sending the inspirational stories of what Karlene means to each of you. That's going to help her get through the rough week that will be chemotherapy. Oh yeah, today Jack Volk and her dad came down for the afternoon. Everyone had a great time and it was nice to get to know more of Karlene's family.

Update 3/12/08: A short-ish update tonight, as I'm a little tired and sore. They started collection of my stem cells yesterday and got 1.64 million. Today they continued collection and got 2.43 million, so I should only have one more day of collecting and then its to wait for my chemo to start. After I start chemotherapy or "conditioning" as Mayo likes to call it, I'll become immuno-supressed so I'll have to wear a mask on any outings I go on or anytime someone visits me. I'm not looking forward to that. I also finally gave in to needing a wheelchair and let Terry and Elise push me around while we were out shopping this afternoon.

Update 3/10/08: They told us that I would need neupogen shots until my white blood cell count was high enough for harvesting. A "normal" count for a "normal" person averages 10 thousand. Mine, with the help of the neupogen needed to be 10 million or better. On Sunday, my labs had me at 4 million. Then after a very rocky night up and down with a lot of pain, my counts showed that they had tripled, coming in at 12 million! The pain is caused from the bones working so rapidly; something like really bad growing pains. So tomorrow I start collection!

The other thing we had to day was a class called "How Redundant Can May Be." Ha ha. What it really was, was "High Flow Central Venous Catheter." Where after assisting the nurses for the last three days in changing the dressings over my catheter site, I was now being taught how to do this very thing. There was another guy in the class that obviously felt the same way about the redundancy and we started teasing the nurses with the wrong answers! Ha ha. The nurses told us they had enjoyed teaching us (even if we were smart asses) and look forward to seeing us tomorrow for the remainder of the class.

Other cool things: Elise came down to help out for the week. We found a bread store with some really tasty stuff. We also found a really cool toy store. Tonight we at a restaurant called "Candadian Honker." Supposedly, they have art made of goose poo, but we didn't see any. The food was really good and filling but surprisingly nobody said "eh" or "hey hoser" which I hear canadians are supposed to do.

Update 3/8/08: Today was a fairly light day with only a neupagen shot at 9 this morning. Finally, a chance to sleep in, right? Nope! Sunlight in our east facing window of our room ended up with a bright cheery sunrise and a not so cheery me. We did experience one momentary worry - my ankles and feet had swollen up some last night and we asked to about that. That turned out to be nothing to worry about, thankfully enough. Terry took me to Hobby Lobby so I could look for some thread on a cross-stitch pattern I'm working on for a friend and to just putter around. We made a stop at Best Buy too, since it was right on the same parking lot. After we got back, it was a simple matter of washing laundry and just hanging out in the dungeon (my nickname for the lower level of the house). We met someone there that also enjoys some of the TV shows that we like to watch, so we're going to claim one of the TV rooms Sunday night to watch them! One more bit of "normal". In theory, I should start stem cell collection Monday but I'll likely have a couple more days of shots to get my blood count up. After that, its collection and chemo.

Update 3/6/08: A few more screw-ups today. It took them 2 and a half hours to get in for my palindrome catheter this morning and when I came back, I had some serious pain going on! The only real saving grace so far has been taking the oxycodone like clockwork every 3 hours. I have one more test tomorrow morning, and I hope that it isn't all that bad. The shrink that they scheduled me to see this afternoon told me "I don't want to see you, but I'll clear you for this test" after I'd told him in my usual blunt way what kind of bullshit we've had to deal with here at Mayo. He said he had what he needed, I was cleared and he didn't want to see me anymore because he didn't need to be sworn at. I guess some doctor's can't handle someone that's blunt and honest about how they've been treated here so far. Time for me to turn this over to Terry, who has a special message he wants to get out to everyone...

Terry here, and I got to thinking, to help bolster Karlene’s morale, she had mentioned that a lot of people had said that they need her or that she’s made a difference in their lives. So I got to thinking that I could put together a binder of letters. If everyone can write on 8 ½ x 11 paper what impact she’s had on you, this might be a great resource for her on the bad days to come. And please pass this on to people that may not know about the website or have internet access. It doesn’t have to be anything fancy, but I think knowing what she means to each of you would bolster her spirits. It could be anything, really – if she was a mentor, how she made a difference in your life, etc.

Update 3/5/08: Terry here again, giving Karlene one more day of rest due to a modestly hectic day. Yesterday was her delayed bone marrow biopsy - it went well, but her butt really hurts yet. Dr. Porrota gave her the go ahead for the bone marrow transplant! She's her own donor, provided that she can generate enough stem cells. She starts getting the growth factor shots tomorrow through Sunday at the very least, with an addition of Monday if she doesn't have enough free stem cells in her blood tests on Sunday morning. Tomorrow is the day she gets her palindrome catheter inserted and her regular medi-port removed. From the sounds of it, they'll be able to simply swap out the catheter with where the port is at now. After two really bad days, we went out to Timberlodge Steakhouse last night for supper. She ate really well and commented that it was probably the best meal she'd ever had!

Update 3/3/08: Terry here, giving Karlene a bit of a respite from the day's activities. It was a full day of testing today, but due to a scheduling problem, they couldn't do the bone marrow biopsy that had previously been scheduled for this afternoon. It was very, very frustrating today. It seems like for as great a place as Mayo is, they still suffer from one of the primary problems that most hospitals suffer from: lack of communication. A lot of what's being done for us seems overkill, and some of it seems like they don't realize that we're educated people and know, for instance, what a countdown is. At the point I'm at, they get exactly until the end of the week. If they keep making screw-ups like this, I'm just as likely to pull Karlene out of this place and take her home so she can be comfortable and at peace. We had about 8 hours of testing, no wait, let me amend that. We had 8 hours of "go to this building, now go back to that building." For a place that's supposed to help sick people, they don't do much to help them when they're constantly running back and forth between buildings. I guess that's one way to get exercise for the "lab rats" as Karlene calls the patients.

Update 2/27/08: The Gift of Life Transplant House contacted Terry today and gave us our room assignment! The address and phone number will be directly below today's update. I went into work this afternoon to meet with Wilbur - he gave me great news that I would NOT be losing my job because of this! I may go through a period without pay after the donated leave is used up, but I'll still have my job! This was one of my big worries with all of this. I also visited with many of my coworkers this afternoon. It felt good to be with my people. We went over to Auntie Elise's to visit Nisse and found out that she's adjusted pretty well over there. It was still hard to leave her there, but I know she's in good hands. Still bald. ;)

Update 2/26/08: So I had the most worthless doctor appointment today, labwork at 10:15 and then we waited until 11:45 to actually see him. He said my counts are good and I look okay, asked if we had questions and sent us on our way with a "good luck at Mayo." What a colossal waste of time! We moved Nisse, which was very sad for me.

Kalan came over last night because my hair was forming Tribbles all over the house. If you aren't familiar with these, there's a Star Trek episode called the "Trouble with Tribbles" and we've attached a picture below. We shaved my head and put temporary tattoos on my head of phoenixes on both sides of my head. And we've attached a picture of the glossy top me. I'm my own Crystal Ball! In a show of solidarity, Kalan also shaved her hair and is donating to a place that makes wigs for kids.

Update 2/25/08: We have a schedule for my tests at Mayo. It looks like they're going to keep me busy from 7 in the morning until 5 at night every day. I'll likely be bald in another day or two, but I have tattoos that I plan to put on my head (just temporary ones folks!) and there'll be pictures later. ;) Nisse will move to her Auntie Elise's place tomorrow night. While we'll be moving this coming week, we don't have an address yet and likely won't until Sunday or Monday. Once we do, we'll post here. You can also continue to send to our home address, a friend will be mailing everything that comes to us once a week. Packing has taken a lot out of me and I'm really tired.

Update 2/23/08: I'm home from the hospital and my white blood cell count is slowly returning to normal. I also don't have to do chemo before leaving for Mayo, on the condition that I not go into work to this coming week. That's probably for the best, since we still have a lot of packing and last minute things to do before leaving. My hair is starting to fall out, so I'm itchy in weird places again. My energy is really low yet, so I spend a lot of time in my chair. On the plus side, this gave me a chance to conquer another long standing fear - from the time I was little, the movie "Poltergeist" has always scared the hell out of me. Today I finally watched it, all the way through and I'm not scared!

Update 2/18/08: Apparently Karlene isn't supposed to have any rest before she goes to Mayo. The weekend had gone relatively well, and we both attended the Snow Ball that had been put on by Porpoura (a local coffee shop) and Filling the Gap (a local program that provides assistance to those traveling to Grand Forks for cancer treatment) on Friday evening. It was good to see some of the people that have helped Karlene and I in the past.

Saturday and Sunday passed by relatively quickly and Sunday Karlene felt well enough to do some work on her cross-stitch and watch a movie. Unfortunately early Monday morning, she got really bad chills and cold shivers to the point of her lips turning purple! We got her up to the ER and they didn't waste any time getting her admitted to the hospital. It now seems that she has/d a neutropenic fever, likely due to her white blood cells crashing because of last week's chemotherapy. They'll know more after the cultures have been done tomorrow.

Also, Karlene cannot have live plants and very limited company. This is because her immune system is too far compromised. A positive note on all of this - Karlene is finally starting to come out of the deep depression and denial she had been in. She has started to read some of the material regarding her Bone Marrow Transplant that is upcoming as well. Thank you everyone for the kind thoughts, words and prayers thus far. Keep 'em coming!

Update 2/15/08: I got out in time to do my speech at church! I guess my pastor said a lot of people were glad they were able to hear it. It was one I had looked forward to writing and speaking. I have it attached here as THE GOOD THIEF. Hope you enjoy it! I've also got my orders for Mayo! March 2nd we'll be driving there to start a week long battery of tests including more bone marrow and blood tests. Then lots of shots, injections, etc, head to toe physical inspection. Here's the funny part: if everything stays exactly on track as they have it, I'll get my own "resurrection" right along with Jesus on Easter Morning! That's the Monday they're shooting on reinjecting my own stem cells to give me new life again. Easter Sunday will be my "day of rest."

This is Terry's spin on the positive, trying to help me find some positive in all this, but I'm still having a hard time. The pain is barely manageable and looks to only get worse until this is over. I've lost 7 pounds since being in the hospital and I'm terrified to go through this. The best they've been able to tell me is that it can be excruciating and "they'll do what they can to help." Once Easter hits, I'll be needing lots of massages to help ease the pain as the bone marrow and stem cells get to work. ...Any offers? No experience necessary and I promise to be grateful!

Update 2/12/08: One more Terry update, and hopefully Karlene will be out and about again! Dr. Dorrity and Dr. Leichter, one regular doctor and a urologist, finally came to a conclusion on Karlene's pain/problem. It turns out that it wasn't actually a kidney stone or a gall stone, but very likely a reaction to one of the chemo drugs. Also, the Hydromorphone was likely the cause for her extreme nausea and vomiting. They've taken her off of the drug and switched to oral pain management in the form of her oxycodone. She's still really hoping to get to church tomorrow night to do her part of the Passion. Folks, keep those prayers and well wishes coming!

Update 2/11/08: Terry here again, updating on behalf of Karlene. What should have been a day of rest and recovery turned out to be a day spent up at the hospital. Late Sunday evening, Karlene started having problems with needing to get up frequently to go to the bathroom. 2 and a half hours later, pain started to settle in and we couldn't manage it, so at 5 am, we went up to the emergency room and after an x-ray and a CT scan, it was determined that she has a kidney stone somewhere in her urinary system, causing all the problems. Sadly, it took most of the day to get the nurses to get her some proper medication for the nurses to get some relief from the nausea. It only took Karlene throwing up 11 times to finally convince them that the meds they were giving weren't working. Karlene and I have a strong suspicion that the pain reliever they were giving her was actually a stronger narcotic than morphine. Here's to hoping the anti-nausea that worked before works again.

Update 2/10/08: Terry here, updating on behalf of Karlene. This was her first chemotherapy here in Grand Forks. Every single scheduled appointment this weekend ran late and Karlene wasn't happy to say the least. Friday afternoon resulted in her being absolutely wired throughout the day and night. Saturday, Stephanie took Karlene up to the hospital that morning and found out that due to the storm that had gone through the area this weekend resulted in some of the pharmacists couldn't make it in right away. That resulted in everything running behind. She's home now, and resting pretty well, though a bit dizzy and very tired. We'll see how tomorrow goes.

Update 2/8/08: Sorry it's taken so long to update again. This week was my last "normal" week at work. It was still interrupted with blood draws, appointments and tons of phone calls from doctors wanting to rearrange yet MORE of my appointments. Then of course, you get there, and sit. And sit and sit and sit, and wait some more. On Wednesday night, my church (Augustana Lutheran) held kind of an impromptu fund raiser for 3 of us that have cancer. The 8th and 9th grade confirmation students wanted to sponsor it on Ash Wednesday and put together a spaghetti feed along with their parents. Even on such short notice, there was a nice turn out. Two of us were able to be there; the third was in the hospital.

Thursday, I met with a counselor that Mayo matched me with. She's really nice and, God forbid! She GETS me! After only 45 minutes she nodded, and said, "I hear a lot of complaints about the way Altru runs things." Big surprise. I also met with a psychologist that day that rearranged some of my medications. He couldn't understand why the doctors had chosen all brand names, when off-brands work just as well, and also couldn't see why I was taking a sleeping pill when insomnia isn't my problem; anxiety is. He also validated my right to be angry right now, which was a HUGE help. He told me that I have a RIGHT to be that way, considering how fast I'd been pushed through so many procedures and how they kept rearranging my schedules on me. I felt so relieved to know that it's OKAY to feel this way. And to say so. He told me it's most important right now that I speak what I'm thinking and keep talking, even if it's not exactly what others would LIKE me to say.

I had my first chemo today. I had to wait over an hour before they got around to getting me in for it, then they screwed up on putting the needle in my metaport, taking 3 tries before getting it in, making me almost pass out from the pain. After waiting two hours, I asked if they were going to get around to giving me the damn drugs or if I should just go back to work. Surprisingly, they moved pretty quickly then. And luckily, the needle is in now and will stay in over the weekend. I check into the hospital tomorrow and have to stay until mid-sunday for the rest of my chemo.

On the upside, we got a letter in the mail today that said our insurance WILL approve the procedure. Now we wait for Mayo to call with a date to go. Also, I decided to do something fun with my hair today. It's just temporary, but hey - what's the worst that could happen? My hair will fall out? HA HA! (Picture attached, please click on the outlined blue boxes below) The story behind the color is this: a friend of mine in Pennsylvania and I are, according to our husbands, pure chaos, like Thing 1 and Thing 2 from the Cat in the Hat story. So, in our honor, I went with "THING BLUE" for the color!

Update 2/2/08: Tuesday I had the bone marrow biopsy in both ass-cheeks, then got in a car to ride ALLLL the way to Shakopee. The roads into Rochester were closed due to a storm. We finished the drive Wednesday morning, with more pain to my tushy. I met with Dr. Porrada, who then informed me that, contrary to what my doctors here had said, we could have had a conference call instead of the trip. Grr! I had to also meet with one of their social workers on Thursday, who informed me that I need a caregiver present with me throughout my time in Mayo.

We found out the entire procedure will cost anywhere from $200,000.00 up to $250,000.00. Right now, we're waiting for clearance from our insurance. Once that goes through, I go immediately to Mayo. Terry doesn't have 6 weeks of leave time to be gone with me for all of this, so we are in the process of locating people to come stay with me the first three weeks I'm there. I'll be outpatient, but only if I have a caregiver. The cheapest place to stay is what I'm calling the "Penguin Freak House." For $25.00 per night, we can stay at the Gift of Life Transplant House, run by nuns. I'm not overly excited about being around other people also going through different transplants, but for that price, we can't really argue with it.

Thursday night we drove ALLLL the way back to Grand Forks, so I could be ready for Friday, when I had my metaport reinstalled in my neck, leaving my right arm fairly useless again, as well as giving me ongoing pain in my shoulder, which, if like last time, will stay even after they remove the port when this is over.

I start chemo this next Friday. Financially, things are really tight, since our savings were wiped out the last time we went through all this cancer crap. I've also hit a bottom emotionally, and I'm having a hard time finding a reason to keep going. Dark thoughts of ending things have entered my mind a few times, but I'm trying to fight this. Please keep me in your prayers as I struggle to find a reason to go through all this pain and torture.

Update 1/27/08: Lymphoma is back. I had an inter-thoracic needle aspiration biopsy (added above) last Thursday to determine this, and found out Friday at 4:20 pm. This trip will involve me having bone marrow extracted on Tuesday, which will be saved for April. I have to go to Mayo on Wednesday to meet my team of doctors there, then come back here to start chemo on Friday. This type of treatment is called ICE, and will involve me at the chemo center every other Friday afternoon, then checking into the hospital for each of those weekends for a high-dose slow drip to be inserted. This will go through April, at which time I will be sent to live at the Mayo clinic for at least three weeks. Between now and then, I will need to make several more trips to Mayo so they can do PlasmaPheresis on me, in which they extract stem cells.

Then, when I'm stuck at Mayo in April, they will kill off everything Living in my system, then reinsert the bone marrow they'll take out this week, plus the stem cells. They THINK I should be healed after that, if I survive all of that.

I'm feeling perfectly healthy otherwise. I'm not tired, sick, or anything like that. I've spent the weekend shopping and getting ready for when I get sick (which will be once the doctors start touching me and giving me drugs). At that point, I hope to see everyone! The doctors are sadistic enough to think I should again hole up in my house and enjoy staring at the same four walls for 6 months, but I'm planning to work every day I feel good. That may not be many, but I need to try! Please email, send snail mail, or stop by to see me!

I get my metaport reinstalled Friday morning and will start chemo friday afternoon.

On June 9th of 2006, I was diagnosed with a form of Lymphoma, a type of Cancer that affects the lymph nodes in the body. I had been feeling ill for two weeks prior to being diagnosed with symptoms that had ranged from shortness of breath to dizziness after too much physical exertion. Terry had convinced me to see my regular physician, who performed a battery of tests on me, including an x-ray. The x-ray revealed an unusual mass in both my right and left lung. He initially thought it was either a lung infection of some sort or pneumonia.

On the 8th of June, Terry took me into the Emergency room for an extreme case of back pain and near hyper-ventilation. After a series of blood draws and another set of x-rays, they found that the mass in her lungs had grown. Her left lung was now over 50% blocked and her right lung was becoming more filled as well. The doctor's weren't sure what it was yet, so they admitted her in for observation and to do a CTscan (also called a CATscan) and a lung biopsy. Friday afternoon, they took the me into surgery for my lung biopsy. Shortly after the surgery, they were able to determine it was a type of lymphoma, most likely one of three types - B-Type, non-Hodgkin's or Hodgkin's.

The next two weeks resulted in more tests, and a definitive prognosis of nodular sclerosing Hodgkin's Lymphoma. Our Oncologist suspects that the cancer is in either stage III or stage IV. At stage IV, the cancer sinks into the bones and other organs that do not have lymph nodes. On June 21st, a bone marrow biopsy was done on both sides of the hip to make sure that it had not gone that far yet. Chemotherapy begins on Monday the 26th with the first of 12-16 treatments. There are two treatments per month, with a treatment length being 6-8 months with 1 month of recovery time after.

Lymphoma is the third most common childhood cancer. It is cancer of the lymphatic system, which is made up of thin tubes that branch like blood vessels into all parts of the body. These lymph vessels carry lymph, a colorless, watery fluid containing white blood cells called lymphocytes. Along the network of vessels are lymph nodes, groups of small bean-shaped organs that make and store infection-fighting cells.

Clusters of lymph nodes are in the underarm, groin, neck and abdomen. The lymph system also includes the spleen, the thymus, and the tonsils. Because the lymph system is so extensive, lymphoma can start in many locations and spread to almost any organ or tissue.

Hodgkin's disease is distinguished from other types of lymphomas by the presence of a particular type of diseased cell, called the Reed-Sternberg cell (named for the scientists who discovered and studied this type of cell). Another way physicians identify Hodgkin's disease is by the way it progresses. Hodgkin's disease usually begins in the lymph nodes of one part of the body, usually in the head, neck or chest. It then tends to spread in a predictable manner from one part of the lymph system to the next, and, in advanced stages, to the lungs, liver, bone marrow, bones, or other organs.

The specific cause of Hodgkin's lymphoma is unknown. It is possible that a genetic predisposition and exposure to viral infections may increase the risk for developing Hodgkin's lymphoma. There is a slightly increased chance for Hodgkin's lymphoma to occur in siblings and cousins of patients.

nodular sclerosing - the most common subtype, nodular sclerosing Hodgkin's disease tends to occur in adolescents and young adults, and affects more females than males. This subtype typically begins in the lymph nodes of the chest and other places above the diaphragm. Bulky tumors may arise in the mediastinum(the space in the chest between the lungs) and spread to lung tissue.

Cough, wheeze or shortness of breath may result if tumour is present within the chest and swelling of the neck and upper limbs may also occur. Involvement of the lymph nodes within the abdomen may present as abdominal swelling, back pain (which is typically worse on lying flat), or swelling of the legs and feet. Involvement of the spleen or bone marrow may result in discomfort, or spontaneous bleeding, bruising or anaemia.

In addition to a complete medical history and physical examination, diagnostic procedures for Hodgkin's lymphoma may include:

Unlike the non-Hodgkin's lymphomas, Hodgkin's disease behaves more predictably and is less likely to spread outside of the lymph nodes. These factors contribute to the good survival rate prognosis for Hodgkin's lymphoma

There is increasing concern in the medical community about the long-term consequences of treatment of this illness, especially the rate of second cancers, including breast and lung cancers, and some forms of leukaemia. Higher rates of heart disease and infertility, particularly in males also result from treatment.

Mouth pain sucks. Swallowing just about anything hurts. But I'm glad that doctor told me to get in all the calories I can. Dairy Queen shakes, look out!