I love hair!!

It's amazing how just a little bit of hair can insulate your head so well! I just thought I should post how my hair style is coming along; and of course I have to take pictures with my sweet kids.

PET scan news

So I saw Dr. Kanard today and got the results from the PET scan that I had on the 7th. It's a long time to wait for results. Anyway, they were great results and I guess I am officially in remission. I will see her again January 22nd. I was able to get a copy of the scan this time and the difference between last year at this time and now. I am so very grateful to be alive and kicking. I thought you might like to see the comparison so here it is.

September 2007- The black mass in my chest was the tumor. It was 13cm. And had to have my head elevated because I couldn't lay flat.

November 2008 -The only black you see in these results are from my normal body functions like brain, kidneys and bladder. I do have scaring where the mass was, but in the report it says "there is no evidence of glucose avid disease."

Day 89 - And doin' fine

Tomorrow is my day 90 since the the transplant; so I am 3 months old tomorrow! I am feeling so good now. My hair is growing back pretty fast and I am starting to get more energy. I even mowed the lawn on Thursday; you never realize how wonderful it is to be able to push a lawn mower until you can't for a whole year. As I was mowing I almost started to cry because I was so happy. I'm even going to go with the boys on their field trip on Monday to the Fire Station.

My next cancer related appointment is November 7th. I will have another PET scan, but I won't see Dr. Kanard about it until the 20th. Dr. McSweeny is still very optimistic about the transplant being the cure.

Day 70 - Isaac loves the song "Let it Be"

I have gone to a lot of doctors in the last two weeks, but for once most of the doctors were not for me! I took Lizzie to a dermatologist last Monday to see what was still wrong with her skin. She still had a rash that she would scratch every night on her head. She gave me a sample of a cleanser instead of shampoo and it has worked pretty well. It is called Cera-ve. She also gave me a prescription for a really expensive eczema cream. So far it seems like the Cera-ve is kicking bottom.

The second doctor was for Lizzie's eye. Since she was born she has had a clogged tear duct. So since she is now a year the pediatrician recommended that we take her to an optometrist. He did a routine eye test on Monday and yesterday she had surgery to unclog the duct. It only took 15 minutes, and she was so good she didn't cry at all before, during or after. Her eye was red and bloody for the first 5 minutes but then she was just fine and I haven't seen the normal tear since.

The last doctor was for me, but it was just a check up with Dr. Kanard. She thinks that I am doing very well. We have an appointment scheduled with Dr. McSweeny for next month to determine when we are going to get the next PET scan.

Day 55 - Great day to be alive

Sorry there aren't that many things that you can rhyme with five. I am starting to look like Sinead O'Conner or a peach that's fuzzy again. Derek went to Kansas City last week for 3 days and came back amazed at how fast it grew while he was gone. My eye brows and eye lashes are growing back too just not as fast as the top of my head.

Derek and I were reminiscing about what happened these past few days a year ago. A year ago yesterday I had the biopsy in my chest so the scar in my throat is over a year old now. A year ago today I was getting radiation to shrink the 13cm mass and Dr. Kanard and Dr. Klish were beside themselves with the size of it and the worry that I wouldn't be able to breath soon if it grew anymore. It's hard to think that if I had been born in a earlier decade I wouldn't be alive today.

Day 51 - I feel almost done

My port is officially out. My left shoulder and arm hurt a lot but at least it's gone. I had the poor thing under my skin for almost a year so I think there were a lot of muscles that grew to it that he had cut. Hopefully it will start to feel better soon. We do have the souvenir port for future show and tells.

Speaking of show and tells the boys went to preschool for the first time this year. They had a lot of fun. I asked Lisa, Dr. Kanard's assistant, if I could get a CBC after the surgery yesterday. The results were good; WBC was at 4.0 and platelets were 172. I let the boys have a choice about whether they wanted to wait until Monday or go today and they got their new clothes and shoes on and asked if it was time to go to school yet.

Day 41- I just Love the SON

I was able to go to all of church today for the first time in almost 3 months. It was great to be able to feel of the spirit there; even though Lizzie is at the age where she doesn't want to stay still or sleep.

I was also able to wear my fake eye lashes. I'm actually getting a little better at putting them on. I wore them on Thursday and I didn't do such a great job of putting the eye liner on first, I never really used eye liner before now. I felt a little bit more myself with the fake eye lashes on and stuff on my eye brows; since when I look in the mirror now I have to do a double take each time since I look so different. I think my whole family is more use to the way I look right now then I am. That's okay since I can see a little bit of hair growing on my head. Right now it seems a little light, hopefully it will be red or brown and not grey.

Day 36 - An x-ray just for kicks

Today I had to go in to get a chest x-ray because I got the cold that the kids had. It went to my chest and I have been coughing for the last couple of days so yesterday I called the transplant nurses and they told me I needed to come in to Fort Collins or Denver today to get a x-ray and see the doctor just in case. So it was off to Fort Collins.

My chest was clear and my white blood cell count was up to 3.4, almost normal range. My platelets were up to 126. Dr. Kanard said that since my count was up I can try to wear fake eye lashes since I only have a few of my own left. I feel much better since I got some sleep last night.

I have a date set to get my first and last port out (Sept. 9th) and another meeting with Dr. Kanard scheduled. I am very excited to get the port out because at the beginning Lisa, Dr. Kanard's assistant said it was the final stage. I was suppose to get it out in March before we got the news about the Hodgkin's. So let's hope it's coming out this time.

Day 35 - Not a easy day to strive

Day 35 wasn't such a good day. Our cute little dog Dee Dee was having problems for the past 2 months or so. Sunday night she was having more problems then normal. When we were going to bed Derek went to look for her and she was in the basement against the wall struggling to breath. He brought her upstairs and she was not doing to well so he took her to an emergency vet. They did an x-ray of her chest and found a lot of small tumors in her chest. Derek brought her home at 2:30 a.m. The next morning we had to put her down. It was heartbreaking seeing Derek and her looking at each other. He had her for 9 years, if not longer. She was a wonderful pet.

Day 33 - Without Drugs, where would I be?

I'm sorry that I haven't written in a week, . It's been eventful and then again it hasn't. All of the kids got colds after Sunday; so Thursday my throat started hurting and I started sneezing and coughing. So now I have an achy cold; hopefully it won't last long. It seems like the rest of them are getting over it quickly. I went to the boys preschool to meet their new teacher and she seems fine with them starting in the middle of September.

Day 26 - Getting back into the mix

We did a lot today. Derek's sister Lacey got married in Utah on Wednesday his family came back on Thursday night. His sister came back with them from California with her 2 daughters until tonight. So, we went to Grandma and Grandpa's house for brunch and went to the butterfly pavilion in the afternoon and then out to eat for dinner. I pretty much stayed in the area with Rosie the tarantula and we tried to go to dinner before the rush. It's hard to try to get back to normal, but remember that you still have restrictions. I'll have to upload some pictures later.

Day 25 - So GLAD to be ALIVE

Since I am home and at my computer, I thought I would post the pictures that Derek took of me (and my bald self) and my nurses. The first is my nurse Penny, who gave me all the wonderful advise; and made the Chemo less horrible. The second is Nancy, who was my nurse the following week after the transplant. They were both wonderful!

Day 24 - watch me soar

So my platelets were lower than before at 118 and my wbc was 2.3 so both Deliese and Monica were close. McSweeny said that my body is trying to make an equilibrium. It looks like everything is still going well as long as I don't catch any bugs. I have an appointment with Dr. Kanard in two weeks so it will take that long before I know the status of my white blood cells.

Day 23 - It's fun to be me

I forgot to write yesterday, I guess that's how good I'm doing. We went to the pool since I can't stand staying in the house. Tomorrow I will go to the doctor again but in Fort Collins. Hopefully my counts will be higher. If you want to guess what my white blood count will be tomorrow or my platelets make a comment. I think I will guess my wbc will be 2.1 and my platelets will be 174. It's funny since my family has guessing games like this for what the new baby will look like.

My eyelashes are down to about 10 lashes an eye. The hair on my head seemed like it was starting to grow but that new growth went away. So it will probably be another 2 weeks until I get some growth again.

Day 22 - Why feel blue?

Day 21 - almost done

..well kinda. We're waiting in the little room again this morning for Dr. McSweeny. We will find out soon what my CBC is and see if my white blood cell count is over 3.5, which is the minimal of the normal range.

Not there yet. Actually my white blood cell count dropped to 1.8. Dr. McSweeny said that it will drop down because my platelets are being made and I am not getting the shots that produces more white blood cells. So it might be 3 or 4 more weeks before my count comes back up to the normal range. It will be a year before it all goes back to my normal.

Day 20 - Blessings are plenty

Derek and my mom are at church right now with the kids. I actually got to put a barrette in Lizzie's hair. It hard to know that I can't go with them. It's been 3 weeks already since I've been able to go. The young men in our ward are going to bring the sacrament to me after church. I've always wondered what happens when they bring sacrament to the sick, I guess it's neat to find out.

So to go along with my mantra we've had many blessings through out this year. Many of our blessings have come from the hands of our friends and family. I know that my family and I have been carried through this. I have seen what a blessing it is to have such a wonderful family. I hope that I never take them for granted.

Day 19 - More cool than James Dean

I'm still doing well. Hopefully that will mean that Monday I will have a higher white blood cell count. I actually took the boys by myself to the park this morning. We watched a crop duster near our house. Derek had to take Lizzie to the doctor again because she still is having the rash that they thought was bed bugs. We are changing our detergent to see if that is it. She hasn't had yellow dye since we assumed that it was the culprit. I might even give her a diet of only one food a week. Lets just hope that it is the detergent.

Day 18 - A real spider bite would be mean

I took off the bandage today from the catheter. It looks a little gross. The boys have gotten all of the spider books from the library in the last week and we have read each one a number of times. Derek also saw a video with the boys of a brown recluse spider's bite. It looks just like that; yet there are two wounds. It also looks like I could have been bitten by a vampire. At least my "tentacles" are gone; that's what the catheter reminded me of, octopus tentacles.

Day 17 - Thanks to all those who came to clean

Just so you know the house looks wonderful; even with 3 boys and a baby living in it for a week. My neighbor, Ger and her daughter Helen were here when we got home and they were putting balloons on the kitchen chair and a cake on the table. I got a feeling for the way life use to be before the transplant. My mom went to the store for about 4 hours in the middle of the day, so I had all three kids to myself. It was a lot like the chemo cycles I had after the first mass was found. I am just happy to be home.

Day 16 - Exit Queen

Penny came up with the day's mantra. I had the line taken out at 8 and went in early to do my exit interview. The P.A., Trudy, said I am doing very well. I might get more fatigued later and there is a chance that I could get some kind of other cough or shortness of breath, I should be use to that, right. If it happens all I have to do is get more steroids and it should go away. Hopefully it won't happen though. I also should be able to eat pretty normal just carefully, and I can some what clean my house. Anyway, she cleared me to go home; so, we went home around 2:30. It's so nice to be home.

Day 15 - Like Monk, my hands I clean

We decided last night not to go to the butterfly pavilion today since the biosphere where the butterflies are is 80% humidity and I can't be in a green house or anything that humid because I could develop pneumonia from it. So instead we got the boys excited about the aquarium. They had sharks and otters and you could pet stingrays. There was one section of the aquarium that was a tropical rain forest, that was humid, so I almost ran through it. I also gave the boys squirts of hand sanitizer almost every 15 minutes. They had fun though and that's what matters.

Day 14 - Day 14, Feeling more healthy than a salad green.

Deliese needs to be credited again for all of the recent mantras. Today I went in to the clinic for 1 1/2 hours to get the CBC and talk to Dr. Brunvand. He got it scheduled to get my Central Line Catheter out on Wednesday morning before my exit interview. I am so looking forward to going home on Wednesday. The boys have really been enjoying the pool; but it is so hard to keep them quiet in the apartment; and Lizzie is worse then them. Tomorrow hopefully we can take them to the Butterfly pavilion to see Rosie the Tarantula; if we go when it is the least crowed I don't have to wear a mask. The boys got almost all of the books about spiders at the library; so they are really into it right now.

Day 13 - Speedin' along like Lightning McQueen

No clinic today. It's so nice just to be in the apartment without having to have an iv drip. We sang all of the articles of Faith with the boys and other church songs since we could go to church today. My cousin Nina is coming to visit again this afternoon and my mom just got here to help out. When she got here Derek and I put on the hospital masks and made her do it. She didn't want to put it on her nose so it made it really funny and I couldn't help but tell her it was a joke. She asked how we keep the masks on the boys.
I just want to say, thank you again for all of your continued thoughts and prayers. I know that many of you are fasting for me today and I want you to know how much I really appreciate it. It has been so much easier going through this with the knowledge that I have of the gospel.

Day 12 - Into my future I delve

12 is a hard number to rhyme with, luckily Deliese came up with this one again. Today I only had to go in for a CBC and a shot at 8 am. I asked to take a potassium pill for the first time instead of being there for 2 hours to get an iv of it. They don't usually let the patients take the pills for fear of it being so big and it upsetting your stomach, but hey it saves you 2 hours! It wasn't that large or upsetting.

Day 11 - Seeing my kids is heaven

I feel great today!!! Derek and the kids are coming down and I got my discharge papers. I will be meeting with the PA on Wednesday and then hopefully I can go home and come back down to see McSweeny on Monday morning. He has next week off for vacation so I can't meet with him sooner. I get to stop the iv drips tonight; and since it is so hot outside Derek can enjoy the apartment as cool as he wants it because we don't have to pay the energy bill. Right now I have more energy than I thought I would. So things are looking up.

Day 10 - My tastebuds are back again!!!

Things are starting to look up! Last night Tammy made a blueberry parfait and I could taste it and it was wonderful. Today at the Clinic Dr. McSweeny said that I don't have to have one of the iv drugs that was every 8 hours. And he said that the kids can come back down! So tomorrow they will be here. I also found out that my white blood count was up to 1.3 which means that I am no longer at the worst stage and my stem cells are engrafting! It will probably be around August 11th that I will be able to go back home. I was able to get my discharge papers; and I will probably have a discharge meeting late next week. McSweeny said that they just want to monitor me for the next week.

Day 9 - Cells grafting would be a good sign

We just got the CBC results; my white blood count went up to 0.3 from it being 0.1 since Sunday. My red blood count went up to 29.5, so I don't have to have another blood transfusion; and my platelets went up to a 10 so I will have to get platelets but that's it. So only an hour or so. Since all of my numbers are going up a little I might be grafting soon!! Very exciting!

We also finally got the Oakwood people to get housekeeping to the apartment, but we couldn't really tell once we got home that they actually came. I do have some bad news; at first Kelly (our coordinator) said that we would probably be here for a total of 22 days; chemo and all. Today Dr. McSweeny said I will have to stay here for 20-25 days post transplant. So it will probably be a whole week that I have to stay more than I expected. Hopefully, Derek and the kids can come down soon.

Day 8 - Life is sure great

So, today Tammy and I went into the clinic at 9:30 a.m. and didn't get back to the apartment until close to 7 p.m. My platelet went down to 3 even after the platelets I got yesterday. My red blood count was down to 25.8, so I had to get another blood transfusion too. I also found out that one of the culture bottles that they took yesterday came back positive for some kind of infection. Now, I have to do another iv drip every 12 hours. I might have to do this for the next 7 days. This one has a side effect that makes your head turn red. When I got it today instead of turning red my head turned purple. The nurse found it hillarious. Hopefully tomorrow my counts will be higher so that I don't have to spend the whole day in the hospital.

Tonight many of my friends from church cleaned my house. If any of you are reading this, I just want you to know how grateful I am; and I hope the house wasn't too horrible. My mantra today is not all sarcasm; life might not be so great right now; but living is sure wonderful.

Day 7 - my hopes rising like leaven

Deliese Kubie came up with today's mantra!
We had a very exciting night last night; We found that the diarrhea that I've been experiencing is because of a bacteria called C-Diff, a very nasty bacteria that is in almost every human but the good bacteria usually fights against it. So I am on another antibiotic to get rid of that. I also experienced a slight fever last night so we had to call the after hours nurse. She came and found that the fever kit that was sent to us didn't have all of the supplies she needed. The good news is that my temperature went down and so I didn't need to go to the ER. My temperature is back to normal again today.

Part 2 - My platelets were down to 7; so I went to the hospital again and got some more. I also had to meet a nurse at the apartment to show me how to hook up an iv at home every 8 hours. Because I had a slight fever yesterday I have to have this antibiotic iv to make sure nothing happened or will.

Tammy came down today to be my caregiver; while Derek went back up to Johnstown for a few days until I get my white blood cell count up. He can bring the kids down with him when that happens; so please, please pray right now that my white blood cells will come up and that the stem cells will graph soon.

Day 6, Marrow as new as these baby chicks

No fevers yet. The few white blood cells that Katie has left haven't quit yet! And yesterday, Katie got her first Neupagen shot. Neupagen promotes white blood cell growth. She'll be getting one each day until those counts go back up.
And today, her red blood cell count dropped below the magic number... 25% (it's been hovering between 25 and 30 for the past 5 days). So, we'll be off to the hospital for a transfusion of red blood cells. That'll take several hours and then we'll head back to the apartment. Just fyi... the normal range for red blood cells is 38-48%. All this is normal. Most patients have 2-4 transfusions. We'll be happy to get away with just this one. Also, her platelet level is getting close to that magic number of 10 (K/uL). Her current platelet level is 14. Normal is 150-400. If she drops below 10, we'll be back to the hospital for another transfusion (of platelets this time).
So, it'll be a fun day of sitting in the hospital while hooked up to a machine.

Day 5, Doing the Jive to "Stayin' Alive"

That song is now in my head. "ah, ah, ah, ah Stayin' Aliiiiiiive".

So I had a bit of fun before leaving the apartment this morning for the clinic. I thought I was doing quite well, in fact, when after I ate a bowl of cheerios, I all of a sudden got sick and threw it up. Then we were in the lobby on our way out the door and the other end started rumbling. So I had to go back upstairs and rush to the bathroom again. Even though I hate throwing up, the worse thing so far is the constant horrible taste that is in my mouth. It makes foods that I love, like the brownies that Derek made last night, taste horrible. The doctor says it is because of the GI tract scuffing cells, since they are very fast growing cells the chemo wiped them out and is continuing too.

My CBC came back and my white cell count is at 0.1; so that is as low as it can go and they expect it to stay that low for a few more days before coming back up. But I managed once again not to go to the hospital for more blood.

Day 4, Hear me Roar

Roaaaaaar!!! I didn't have the computer as much yesterday so I didn't think to blog, sorry. I dodged the blood transfusion again. But my white blood count was 0.2. Which means we have more downhill traveling to go. Now on to day 5.

Day 3, Lovin' my family

My 3rd day! Not that bad yet. And not that bad is great. I miss my kids but everyone knew that I would. I am just so glad that I have Derek. He is so amazing! The doctor did say that this week until day 12 or so will be the worse, so as long as today isn't so bad we are doing good. That means that the kids won't be able to come down until late next week.

Day 2, Skies are blue

Skies are blue today! Katie continues to do great. Just a bit of acid reflux. And the smell seems to have gone away. Penny, the nurse, continues to talk about how Katie is a great example of how they want bone marrow transplant patients to feel/act/etc.

So, with this rhyme/mantra thing... we're looking for some help coming up with good ones. Send us emails with your suggestions and everyday we'll post them in the blog. We're looking for some fun creativity from everyone. Make us (and everyone who reads them) smile! This will be your chance to become a famous (or infamous) poet!

Day 1 is so much fun

So Penny said I needed to start a mantra for my days after the transplant, and they had to be happy; so day 1 is so much fun. I've had some acid reflux which is not so much fun but not horrible on the spectrum of what could be happening. My blood counts are pretty low today so I will most likely have to get a transfusion tomorrow or Thursday.

The exterminator came today and couldn't find any bed bugs but he set up sticky tape around the walls to get them if they come out at night. The crib is gone so hopefully there will be no more worries. I just hope Lizzie is still okay and it didn't go back to Johnstown with her, my poor sweetie. It is so hard right now to be away from my kids. I think I called home at least 5 times.

Day 0 - T-Day

Happy Birthday to me! My nurse, Penny started singing to me when we got in the clinic today. My white blood cells are still there so I am still hanging on. It was a pretty long process because there was one more person getting his cells back today too, so I had to wait for him to get his first. They gave me a lot of premeds and that are making me sleepy. We watched the rest of the 24 season while waiting. The inserting of the cells was very painless, just cold. I might be starting to get mouth sores but that is low on my problem list right now.

The kids went back up to Johnstown today; it was so very hard to see them leave. Hopefully they will be able to come back next week. We have had one problem with this apartment since we got here and hopefully it will be remedied soon. Lizzie had a rash on her head and back, she itch the whole time she was here. When they got home Carla, Derek's mom took her to the pediatrician he said it looks like bed bugs, yeah. So the crib that they put in our room for Lizzie had bugs in it, and it might be in our clothes and the rest of the sheets. This apartment wasn't really cleaned when we got here, there is a pee stain in the corner, the bathroom that I have to use alone is really dirty on the grout and they don't have any housekeeping unless you speed $100/week. We have to either go to another hotel for the night and wait for an exterminator tomorrow to see how bad the bug problem is; or stay in it until we get more information. I'm just glad she didn't have chicken pox or something else.

Day -1

Tomorrow is T-day. My new birthday. So far I am not feeling too bad. A little achy, tired and my mouth tastes funny most of the time but that is it right now. I think I might take a nap soon. The kids are still here until tomorrow and it makes me so happy to have them here. They are probably going to leave tomorrow morning when my mom comes up to watch them. My cousin Nina came to visit yesterday and today my friends Steff Wright and Erin Chorak are planning on visiting.

Tomorrow the plan is to go in at 9:30 and get IV fluids for an hour the stem cells through an IV and then another hour of fluids. The nurse today said that the preservatives that they put in the stem cells smell so for the next 24 hours I will smell pretty much like rotten garlic everyone around me will smell it. Today I got a CBC and 2 hours of fluids, patassium and magnisium. They told me after I start the antibiotics, antifungal and antiviral pills I will have a fever and have a blood transfusion. After 5-10 days they will give me shots to boost my white blood cells so my immune system will go up after that. I think within the next few days I will have the no white blood cells at all.

Day -4

Still not too bad of a day. I have had to go to the bathroom at least 4 times in the last 2 hours. I guess that just means that my kidneys are healthy. They tell me that tomorrow will be the same as today and Saturday I will come in at 8 and have 1 hour of Chemo and then wait for the doctor to see me. There are a lot of outpatient transplants right now so they are very full and crazy. Monday it looks like I will go into the hospital for the stem cells to flow back into my body.
The boys and Lizzie got to go with Grandma and Grandpa and two of their cousins to the zoo today so they had a very, very fun day already. They even came back with new snake toys. Right when they came back to the apartment they feel asleep.
Oh, well here is trip #5 to the bathroom!

Day -5

The kids came down last night and immediately wanted to go to the swimming pool. We went to Applebee's for dinner (don't tell the nutritionist, but the doctor said it was okay this week) and then the boys and Derek went down to the pool for a swim. This morning I came in for Chemo and went back to the apartment and the boys went for another dip in the pool; they love it. I do have to say I am getting very sleepy today and I also had insomnia last night for a little while. My nurse, Penny is telling me to make sure I take every day one day at a time. She is hallarious, I think we will be working with her for the most part through the whole treatment. So far when I come in here they keep me in a little room with my drip. I haven't really seen that many other patients; but Penny tells me there are a few that are around my age with kids, so she would like to act as a cruise director and get us all together. I have had to go the bathroom almost none stop all day. They pump a continual bag of saline the whole time so I am really getting full of fluids.

Day -6

So yesterday was my day -7 from transplant. Transplant day is 0 and everyday after that day counts up. They have already told me that the day of transplant is my new birthday. The Chemo drug that they gave me yesterday is alcohol based so they told me that I was going to feel like I had a bad hangover. So at least know I can tell my kids how bad a hangover is! I've experienced it. I have a horrible headache in the center of my head for most of the day and night, I felt a little nauseaus but not too bad because of all of the majorly expensive nausea drugs they give you. It was a full 6 hours yesterday and I was only planning on two. The coordinator told me to come in at 12 to get started and then at 9 yesterday so called and said I needed to be in early because it was a long day. So I had to scramble around and get everything packed faster; because of course I waited until the last possible moment to do that. At least I was able to enjoy my family on Saturday instead of worrying about what to bring for this or clean the house.

Today I feel much better. We even found the pool for the kids and the laundry room in the apartment. The kids are on there way down to Denver now. They didn't join us yesterday because the apartment company didn't have the 2nd bedroom furnished. They will actually get the bed in there tomorrow so tonight they will sleep on the floor or on the couch in the living room. They already have a crib in the master bedroom. So last night we talked to the boys through the web cam. It was pretty hard because they were moving a lot and the sound kept going out. They kept asking if I was okay and it was really hard not to cry. Isaac almost cried when he was asking to come to Denver last night but he did a good job of being a big boy. I can't wait to get my hugs and snuggles tonight.

Our apartment

The out patient transplant lets us stay at the Seasons apartment/hotel. It is downtown one block from Cherry Creek shopping center. Our apartment has 2 bedrooms and 2 baths a living room and a kitchen. Lizzie is a little sick right now so hopefully she will get better before Monday.

week of fun

I am sorry that you have been waiting on me to write as to what has happened with the harvesting. They called me Wednesday night and said that I had 5.6 million cells and I needed 5 million so I didn't have to go in again the next day. I was so excited when I got the call that I actually shouted into the phone.
So now I just wait and try to have as much fun with my family as possible before next Monday. We are planning on going to the Drive-in and Red Robin for sure the other things are up in the air. We also had a great 4th. We had a breakfast at our church in the morning where a boy that I have never seen before came up to me and asked me why I had a scarf on; I told him because right now I am bald. He immediately asked"do you have cancer? and then he said "oh, I feel sorry for you." And then he started talking about Lizzie as if she were a boy. I kept thinking, somebody had to pay him to say this.

Hooked up

I am sitting in the infusion center at St. Luke's Hospital getting my stem cells collected right now. Yesterday I came in at 7 am and had to go home because I didn't have a high enough platelet count. I had a platelet count of 5 yesterday and I needed a 10 or more to collect. The only problem with this process is that you have to wait 2 hours to know if you can get hooked up for another 4 or 5 hours. Yesterday I went to the apartment that we will be staying at in two weeks. It is 1 block next to the Cherry Creek shopping center.
Today I went to Walmart and got my oil changed. They called me on my cell phone to let me know that I had a platelet count of 19; so hopefully that means I can collect all today. The machine is very interesting that I am hooked up to. It looks like a giant old tape/computer from the 80's. It even has little black spinning wheels. They connect four tubes to my catheter and hook it through the machine and the blood comes out of my body and goes through the tubes into a container that scoops out the top of the blood where the stem cells are collecting; and then it rotates through to a heater and goes back into my body. So far I am a little cold and light headed but for the most part I am not that bad. At Walmart I got to movies to watch; Mr. Deeds and Runaway Bride, and I got pencils and a sketch book so I am all set.

Neulesta aches

So the Cytoxan is over. I felt like I had a balloon head when they gave it to me; and I threw up right away. But the central line catheter and the neulesta shot are harder to get over. The catheter had a nasty blood clot on a part of it and it is very big with three lines hanging out from it. I am wearing Derek's big shirts so that Lizzie won't grab it. The neulasta shot is giving me realy bad aches all over my body, worse than before. It hurts to touch any muscle on my body. Hopefully I will start feeling better tomorrow. Before pictures (June 4th) and after pictures (June 20th).

Overnight in Denver

So Friday morning I called my transplant coordinator Kelly to see when we were going to have the CLC put in. She was gone on Thursday so I had to wait. She said at first that we were going to do it on Friday the 27th but after talking to the dentist we could possibly do it on Monday the 23rd (today). She was going to talk to the doctor and then call me back. She never called me. So I left a message at 5 after she was already gone. I just assumed that meant that we were going to do it on the 27th. She called this morning saying I thought you were coming today. Long story short, we are going tomorrow the 24th.

First we have to be at PSL at 6:30 to check in, which takes at least 30 minutes from my experience the first time two weeks ago. Then we will go to the bone marrow floor and they will insert a catheter and hopefully remove the port that I already have. It will stay for about 40 some days while I am doing this transplant. Hopefully it won't come home with me. Then I will go to the clinic and get 6 hours of a drug called cytoxan this will help bring my bone marrow/stem cells out. I will have fluid IV's overnight at a hotel, I'm hoping, and the next day I will go back to the clinic and get the IV's out and get a shot of Neulesta. Derek's wonderful mother and sister will be watching the kids so I am so grateful that they can do this on such short notice. They are truly saints.

What a week

So a lot has happened in the last week. Let's see, my hair fell out or I washed it out last Sunday. On Tuesday my jaw started hurting off and on; Tuesday I did all of the tests, very fun; I passed with flying colors. I did a lung test, an Echo cardiogram, a CT scan, a chest x-ray, a EKG, another bone marrow biopsy, and a urine test. The next day I had a PET scan. On Thursday, my jaw started hurting more and localizing to one tooth; so I went to the dentist. He said that it was only a bruised tooth. The next day we went to the zoo and stayed in a hotel in Denver to visit my aunt Janet. That night I couldn't sleep because my jaw was hurting so much. My cousin gave me some vicadin and I could sleep a little the next night but my jaw was really swollen and hurting. The next morning I woke up with a swollen lymph node under my jaw. So I went to a Urgent Care; they said I had a dental infection. Yesterday I woke up with blisters on my gums so I went back to the dentist. He did another x-ray and saw that the tooth went south and didn't want to be in my mouth anymore, possibly from the chemo. He decided that I needed a root canal. He tried but one canal had calcified so I had to go to a Endodontist. It took another hour and more pain but she never finished. I have to go back tomorrow to get it finished hopefully.

Because of this infection I have to push back the next steps and the transplant by a few days until the antibiotics are done. I was suppose to have Chemo and another port put in on Friday but it may be pushed to Monday or Tuesday. The worst part is that it messes with all of the schedules that we put together for childcare.

Hair today gone tomorrow... again

So my hair is starting to fall out again. It's still short so I don't think I will shave it again; but it annoying finding globs of hair everywhere. About two days ago I felt it tingling and hurting just like last time so I knew what was coming. The good news is it is so dark that it isn't that noticeable yet. Hopefully I can hold off needing to wear a scarf for another week. We were able to go to the temple today where Derek and I were married 5 years ago; while my sister watched the kids. It was so wonderful to be there and feel of that calm, peaceful feeling again. I was worried that I wouldn't be able to go for a really long time.

Lymphoma buddy

I just got connected with a lady that lives in New Jersey who has the same two cancers as I do and went through a transplant in February. She told me that this is going to be a very immense experience. Besides her experience below she said that she needed help for an entire month because she was so week. She has two kids that are 13 and 16; it sounds like I might need more help then she did.

"When I was released from the hospital, I had no energy, and couldn't eat (really, I hadn't eaten anything significant for weeks), my skin was peeling, particularly the soles of my feet and the palms of my hands, and my eyes were very watery. I was told that the tears rolling down my face were the result of having lost the eyelashes that keep them in my eyes. I really needed help in the house for a good month after being released, and I wept a lot, as the experience was just very intense, and full of small challenges. I lost all my hair, which is now growing in, and I look like a woman with just a really short haircut. My fingernails also peeled off, and under them were new nails. I feel completely new!"
"The transplant is intense, but it's brief relative to the lovely life ahead of you."

I'm thinking that I am going to pig out on all the foods that I love before the transplant!! So if you have any great recipes send them my way!

Another Quote

"Mercies and blessings come in different forms--sometimes as hard things. Yet the Lord said, 'Thou shalt thank the Lord thy God inall things' (D&C 59:7). All things means just that: good things,difficult things--not just some things. He has commanded us to be grateful because He knows being grateful will make us happy. This is another evidence of His love." ~Bonnie D. Parkin

added quote from my dear friend Monica

"Tribulation is a blessed lot, because it is only in passing through it that we find transcendence."

R.I.C.E. side-effects

So this Chemo treatment has been very different than the RCHOP. My doctor told Derek that it is a harder regiment than the RCHOP. I didn't throw up with RCHOP but I did this time. I also didn't have mouth sores but I developed them yesterday. The other weird thing is that I got a hive-like rash yesterday night and my arms and legs were itching like mad. The good news is that my hair hasn't started to fall out yet and it's getting very thick. I'm sure it will because with the RCHOP it took 18 or so days after the first treatment; but hey it's still here and that makes me happy. I also have been more tired and I've had a strange headache before I go to bed or when I get up from bed after sleeping.

My most difficult challenge has been my little boy's reaction to life, (I'm guessing here). Isaac has been throwing terrible two tantrums a lot lately. He is very persistent, hopefully that will serve him well in the future but right now it is not so much fun. Because I have had so many doctors appointments since Lizzie has been born, and because I won't be with them in July I feel a little guilty, but by no means do I give into his demands. All I want to do all day is listen to them talk and hug and kiss and play with them!

Root Canal and Chemo; all in one week

Well I am on my second day of Chemo. Yesterday I had Retuxan which was 5 hours and then the E part of the RICE; so all in all it was almost 8 hours. Today is a lot lighter. I have to have the 24 hour pump hooked up soon. Tuesday I also had to go to the dentist for a root canal because of the last treatment of Chemo. What a week, huh. When it rains it pours.

Well I am starting to collect mottos and inspiring words to get me through this. The first one "you must go through bad to know the good!" I also found these messages to be inspiring, "The truth is that our only safety, our only security, our only hope is to hold fast to that which is good. As the mists of darkness gatheraround us, we are only lost if we choose to let go of the iron rod, which is the word of God." and "Your Heavenly Father loves each of you and has sent you to earth with a purpose. He has revealed a plan of Happiness that if followed, will ultimatly bring you home to his presence, having triumphed over the trials and challenges of this world." Words from Hymns mean more now. Even though life has not been as fun lately there are so many good things that come from this experience. Once again I thank each of you for your continued love and support.

Schedule

We went to a patient/caregiver meeting on Tuesday and got the schedule from my coordinator. I got a huge manual for the transplant also. So, here is the schedule.

This Wednesday I start Chemo called RICE. Dr. Kanard found a way to let me do the 24 hour drip from home; with a portable drip that looks like an old walkman. I will do that Wednesday, Thursday and Friday and Saturday I will go in for a IV flush at Poudre Valley Hospital and possibly Nuelesta. I have to do CBC's for 2 to 3 weeks to see if my white blood cells are low enough for the transplant.

Then in June I will have another Bone Marrow Biopsy and PET scan, a heart scan and X-ray on the 10th in Denver. On the 17th I have to go down again to meet with Dr. McSweeney and sign consent forms. That Friday on the 20th I will go back down and get my port removed and another port inserted. Then they will do more Chemo and growth factor to get my stem Cells up so they can harvest them the next week. So, I will go in the 26th through the 30th to get enough stem cells for the transplant.

Then I wait again until the 10th of July; we will go down that day and get settled in the hotel. The next day I will start the high dose Chemo for 6 days until the 16th, I get a rest day on the 17th and the 18th is what I call "T-Day"; we will do the transplant that day. Then I will stay at the hotel for the next two weeks until they decide that I am good enough to go home. Once I come home I have to have the whole house sanitary and someone else has to clean it for a whole year and I can't even be in the room when they clean it. I also have to have all of my immunization shots again like Lizzie, even though she is already one up on me, she has only 1 round of shots left.

So that is the plan. Hopefully it will go smoothly and not too painfully. We still need as many prayers as you can give.

The Next Step

So we talked with both my doctor and the bone marrow doctor yesterday. The biopsies that were suppose to go to Denver to be re-analyzed were sent to the Mayo Clinic again and on the 7th were sent to Denver. So they had no results from that when we saw them. They both recommended an autogalous transplant, which is taking my own stem cells freezing them and then after 6 high dose rounds of Chemo they will put it back into my body.

I don't know the schedule yet but I do know that in a couple of weeks I will have to be in the hospital to have a regular round of Chemo which is called RICE. They put you in the hospital for it because the I part is intervainously injected for 24 hours and it can do damage to your bladder so they give you another drug along with it that is also 24 hours. Dr. Kanard is trying to make it so I can go to the Clinic for the 3rd day but we will see if I can. Then we will wait have another PET scan and in 10 days they will hook me up to a machine and get out the stem cells. Then a week or so after that, I think, I will go to Denver, St. Luke's Hospital, to have the major strong Chemo for 6 days rest a day and have the transplant. I will have to stay in a hotel or something similar for 3-4 weeks later to recover while I am getting my immune system back.

I am a little sad that my hair is finally growing back and now I am going to loose it again for a while. I am also a little worried about the rest of my organs after having so much Chemo so close together. My worst worry is not being able to see my wonderful children everyday. I have never spent a night away from them except when I was in the hospital and now I have to do it again. I just want to hold them all the time right now; which isn't that much different than before. Maybe I didn't learn this enough the first time, but it is really hitting home right now; how precious our time is. I don't know if I am going to be cured. I know that Heavenly Father loves me and watches over me, but I don't know if he is going to cure me. I know that he wants me to be happy during this, even though it may be hard. I am trying so hard to let the little things go; like all of the messes that the boys make. I love them so much, I just hope that this will still be a bump in the road and not a hole. I thought I would include some hair pictures. The second one shows that my hair looks like Isaac's.

Time to wait

Well, we met with our oncologist today and it turns out that things aren't over yet. They got back the last of the 3 tests and they were right that there wasn't any Non-Hodgkin's Lymphoma. But there was Hodgkin's Lymphoma in that lymph node. Katie is having a bone marrow biopsy on Monday. Then on May 8th, we're meeting with the oncologist and a hematologist. Before that meeting, the hematologist will be looking at the bone marrow biopsy as well as the biopsies of the original tumor and the lymph node that was removed a few weeks ago. Then we'll learn what course of action will be taken. It could be more scans, chemo, and a bone marrow transplant. This is a fairly rare condition. Even the Mayo Clinic report said that there isn't a consensus on what the treatment should be. But until the biopsies are re-examined, they can't be sure what the exact condition is.
So you can imagine that we're a bit frustrated, but we're taking it in stride. We continue to rely on the Lord are feeling His blessings in our lives. We'll let you know as we know more.

No more celebration

Well, I thought it was all great, but earlier today my oncologist called and said they did further testing on the biopsy and found another type of Lymphoma called Hodgkins Disease. So, we have to meet with her tomorrow and do another bone marrow biopsy. Not exactly something you want to do more than once in your life! So we'll know more after those tests are over. I'll keep posting here with details as we get them.

Great News!!

We got some good news this morning. Dr. Kanard called and said that the removed lymph node (from surgery last week) was only swollen. There was no cancer in it! So I get to have the port removed; which is the last step to this being over. So no more chemo is planned, and the cancer is in remission!

We have been very, very blessed. All previous indications of scans showed cancer in that lymph node. The Lord continues to work miracles. Thank you for your faith and prayers!

Surgery

I'm sorry that you have been waiting so long to hear about the surgery on Thursday. I keep meaning to write; I’ve been about as tired after this as with the Chemo.
The surgery did go quite well. There were a few complications that could have come with getting the lymph node out but none happened, which I am very thankful for. One was a punctured lung because it was close to the top of my lung the other was rupturing a small lymphatic form that would secrete a white substance that would not have been good. The first I would have had to stay in the hospital because they can't send you home with a punctured lung, and the latter I would have had to wear a bandage with a ball to keep pressure on it over the site for 2-3 weeks. I am so glad that neither of those happened and I am still alive. I did however have a drainage tube until Friday to make sure there was nothing secreting into the area of the wound, which is protocol by the surgeon, I guess that area doesn’t bruise well.

The lymph node was sent to a pathology lab and possibly on to the Mayo Clinic to be processed. We are hoping that there were no cancer cells in it and I can continue with the Retuxan as planned. I will find out sometime next week. So please, please continue with your prayers and fast if you can, I can use all the help that I can get.

Hair

At least my hair is growing back! Slowly but shirley. I am planning on taking a picture every few days so in the end when I have long hair again I can put it all together as one movie. Here is the first picture.

A date for surgery

Yesterday was Tuesday, it was very busy. I first went to Lizzie's six month check up and then right to the doctor that will do the surgery. Dr. Robertson said that he is not exactly sure that he felt the lymph node in question. He did not get the PET scan pictures like I had thought. Today I got a call to set up the sugery. It will be April 10th probably about noon. I have to go to a pre-op appointment and a post-op. I will also have an ultrasound before the surgery to find exactly where it is. There is something else that might happen after they take out the lymph node where there is fluid where the missing node is and it swells. So much fun to think about...

The fat lady hasn't sung yet

We changed the date that I was going to see Dr. Kanard to today so that Derek could come with me to the appointment. The results of the PET scan wasn't what I thought it would be. The big mass that was there in September that hindered my breathing has shrunk even more than December's scan and it is still not showing signs of cancer; so it is pretty much a lymph node again.
There was a small lymph node near my right collar bone that has increased in size since December. Dr. Kanard thinks it is best to just get rid of it. So I have to go to Dr Robinson (the doctor I went to last week about the cough) next Tuesday for a consult. It is so small that you can not feel it with your fingers so he might have to use an ultrasound in order to know where to go. So, I will have a triangle of scars; this one on the right, the biopsy in the middle and the port scar on the left.
The following picture is the small lymph node that is brighter in the bottom (March scan) as apposed to the top (December scan).

Last week

I had two appointments last week. The first on Tuesday was for the ear, nose and throat doctor. It went well since I didn't have to have the scope down my throat. 3 days before the appointment I stopped taking the Nexium that he prescribed to me mainly because I was out, but the other reason is because I had a sore throat on the right side ever since I started taking it. Amazingly after 2 days the sore throat was gone. I told the doctor and he said I don't have to take anything else because the Chemo is over. But I have to see him again in 3 months. The great news is that I am only taking supplements and vitamins now. I also got a kidney and total body cleanse that I am taking from the vitamin cottage, which is a tea that I drink morning and night.

The second appointment was the PET scan. It went as well as the past two, but I had worked out 3 days before and I was still sore from it and that could hinder the results. I will find out this Thursday about the results. I am hoping that my doctor will say that it is in remission.

Last 2 Pet Scans (side by side)

I finally copied the pictures from the last two pet scans so that you can see the improvement. The top of the picture is the first scan from September. The bright orange is the cancer that is the size of a grapefruit. Below it is the last scan in December, it is barely there.

No more Pills! No more steroids!

Last week I was down to one last pill that I was suppose to take every day for my kidneys. I called the nurse Lisa to see if I need to refill it and she told me Dr. Kanard said I don't have to take anything again. I don't have to buy the expensive nausea drug "Emend" and the horrible steroids. I just take vitamins now. Yea! I am finally finishing this hurdle. I have an appointment with the ears nose and throat doctor on the 11th to see if the acid reflux is gone and a pet scan scheduled for the 13th and I will talk to Dr. Kanard on the 20th about it. If she says it is in remission than I will have the "up keep" drug Retuxan every 6 months and for 3 hours, if not it is a bone marrow transplant, but I am very much certain that it is in remission.
Oh, my hair that was somewhat coming in was somewhat falling out last week, but hopefully it will start growing again.

A little Thank you Note

I just wanted to thank all of you who have been so close to my heart, and helped me and my family out recently. You are all so wonderful and a true blessing to me and my family.

I'd like to thank all of those friends from our church, that made me except help, and have cleaned my house each treatment and gave us food! I would also like to thank Sheila Woodson for all of her wonderful meals and her beautiful spirit. The warrior juice has been working. I also need to thank my wonderful husband, he is definitely my inspiration and strength. My sister and mom have been trying to help where ever they can and they have been coming with me to most of my treatments and my mom takes each time off of work to come up to help out anyway she can (even though she won't read this I still need to thank her). My in-laws have been wonderful watching the kids when ever they can and helping us out financially. I also want to thank everyone that has been praying and checking up on us through out this whole thing.

Most important, I would be so horrible if I didn't thank my Heavenly Father for knowing what I could handle and not giving me more. I feel so blessed to be alive and to have my family and friends by my side.

If there were one piece of advice that I have learned through this experience is don't take life or your family for granted. You never know how long you have on this earth.

#8 (The last has past!!)

It was so cute. Yesterday as I was leaving the chemo room the nurses and my doctor were waiting for me with a bottle of sparking cider that they signed to congratulate me. Once I got home I was so exhausted! I went to sleep around 6:30 last night. I am getting my IV flush right now and I am really tired still. I did have insomnia last night around 3 with nausea but I don't think anything can get me down right now, even this cough.

The Melting Pot

The Melting Pot was definitely an experience! It was so much fun, but expensive. There is a foundation called Diane Price Fisher Foundation that gives our family fun things every month. Last month we got a family membership to the zoo and this month it is the Melting Pot. The foundation called and set up the reservations. So they knew it was me when I came through the door.

The lighting was very dark but the tables were far apart so that was nice. The food was so good! First we ate the cheese fondue and then a salad and then the entree. Derek's parents joined us so we had two different pots to enjoy. The entree was a bunch of different raw meats and veggies that you stick in the pot for a couple of minutes and dip them in different sauces. Then we had two choices of chocolate fondue and Dennis (Derek's dad) asked me to pick them. After a very hard decision because they all looked so good, I chose the dark chocolate and raspberry and milk chocolate and amaretto. IT WAS SO GOOD! I was so full but of course you can't just let it go to waste. I definitely recommend it to anyone for a very very special occasion because it is such a fun and wonderful experience.

Last chemo anticipation

Usually I start dreading the few days before Chemo but this week I am so excited to get it over with. I have no clue what I am in for after besides the every 6 month Retuxan and Pet scan. I am just so excited that I can move on with my life. I feel that it has been so chaotic since this whole thing started because I have to go everywhere and I never know when I am going to get sick and have to go in for a x-ray or CT scan. But my hair is really starting to grow back!
The cough is still with me but now I don't really know if it is from being around sick people and getting thier cough or from acid reflux. Anyway it's not gone and it's getting really annoying. The pain in my side started to feel better and then I had a coughing fit and injured it again. Hopefully it will be gone soon!

More Cough problems

Okay so the cough hasn't left yet; and Monday night I was coughing so hard that I think I hurt a muscle under my rib cage. It's now a stabbing pain when I cough and lay down in my right rib cage. I called my doctor Tuesday and she said to take ibuprophan and if it didn't get better to call again. So Derek got me to call again and I had to go in and get an x-ray of my chest yesterday. I didn't get a phone call after so I am assuming that there is nothing that can be done, it just has to heal.
I am getting more excited that next week might be my last CBC!!!

#7 is almost over

I am sitting here in the Chemo room right now getting my IV flush. This part takes two hours and then I get a lovely shot in the arm called Nulesta. I looked at the bill and that shot itself costs $4,000 alone. Crazy huh! Last night I feel asleep around 9 and woke up with a little bit of nausea and insomnia at 4 a.m. Not so much fun but, it's almost over!! I am so excited to have only one more full RCHOP treatment. Next month before #8 Derek and I are going to celebrate by going to the Melting Pot for dinner. It will be a Valentine/Celebration Date. I hope all of you are doing well, and are see as many blessings in your lives everyday as I have. I will save my thanks and appreciation for you in the next blog.

Cough update

I have been bad and I haven't uploaded anything to the blog recently. You are probably wondering what happened with the cough. Well it didn't go away I still have it so Dr. Kanard sent me to Dr. Robinson a ear, nose and throat doctor. First the nurse sprayed a numbing agent up my nose that had the smell of the primate house at the zoo. Then the doctor put a scope (a long tube like thing with a camera at the end) down my nose to look at my voice box. That part made my throat hurt for about 2 hours afterwards. It was not a pretty picture, but I don't really like looking at my insides, it would have been so interesting to Derek. He saw that their was a irritated spot on the wall of the voice box that was burnt from acid reflux. That is actually good news from his mouth. All I have to do is take some Nexium for a couple of weeks and it should be fine. I have to go back to him the 2nd week of March to see if it has completely gone away. Hopefully I won't have to do a scope again. I will try to keep you updated with that.

Unscheduled Appointment

So this morning I had to call the doctor because I have been having almost the same cough that I had while pregnant and shortness of breath. Dr. Kanard asked me to come in to be checked out. So I went in at 2:00 to see Tricia the dr's assistant who scheduled a CT scan to see if it was a blood clot in my lungs. Luckily after 2 hours it was negative. The only problem is that I don't know why I have the cough. Dr. Kanard said it could just be this whole sickness season and it will pass in a few days. I will have to call back if it doesn't go away in a week and then we will run more tests.

Playing with my wig!

Yesterday I wore my wig to take Lizzie to her 4 month check up and when I got home I took it off and plopped it on Isaac's head. He didn't automatically take it off so I went to get the camera. Then Isaac and I convinced Ethan to wear it and finally we put it on Lizzie. They are just so cute.

Waiting for #6

So my next treatment is on Thursday. I was talking to a friend about it yesterday at church and I came up with an analogy about waiting for the next treatment to come. It's like waiting for the end of school because you're suppose to meet the school bully at the swings and it's only 10:00 a.m. The worst thing right now is knowing that your about to feel bad again and there's nothing you can do to stop it.

I also had to call the nurse last week because two of my finger tips and an earring hole all of a sudden became yucky and infected; so I have to take pills for that. One of those finger tips is somewhat separating from the skin, not too pretty. I am also noticing that my eyebrows are really thinning and so are my eye lashes; hopefully that's all they do, and then grow back. The good news is that the hair that was left on my head is starting to grow a little bit so I have several 1 inch hairs everywhere, kind of like Homer Simpson.