November 20, 2008
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."
October 18, 2008
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.
September 26, 2008
September 14, 2008
September 10, 2008
August 31, 2008
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.
August 26, 2008
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.
August 23, 2008
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.
August 16, 2008
August 15, 2008
August 13, 2008
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.
August 11, 2008
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.
August 10, 2008
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.
August 9, 2008
August 8, 2008
August 7, 2008
August 5, 2008
August 4, 2008
August 3, 2008
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.
August 2, 2008
August 1, 2008
July 31, 2008
July 30, 2008
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.
July 29, 2008
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.
July 28, 2008
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.
July 27, 2008
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.
July 26, 2008
July 24, 2008
July 23, 2008
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!
July 22, 2008
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.
July 21, 2008
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.
July 20, 2008
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.
July 17, 2008
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!
July 16, 2008
July 15, 2008
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.
July 11, 2008
July 7, 2008
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.
July 2, 2008
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.
June 26, 2008
June 23, 2008
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.
June 17, 2008
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.
June 7, 2008
June 3, 2008
"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!
June 2, 2008
"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
May 30, 2008
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!
May 22, 2008
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.
May 18, 2008
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.
May 9, 2008
April 26, 2008
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.
April 24, 2008
April 16, 2008
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!
April 12, 2008
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.
March 29, 2008
March 26, 2008
March 18, 2008
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).
March 17, 2008
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.
March 4, 2008
Oh, my hair that was somewhat coming in was somewhat falling out last week, but hopefully it will start growing again.
February 22, 2008
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.
February 21, 2008
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.
February 19, 2008
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!
February 9, 2008
I am getting more excited that next week might be my last CBC!!!
February 1, 2008
January 15, 2008
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.
January 7, 2008
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.