Transplant

I was admitted into UNMC on Friday, November 18, 2011. I started the chemo that day. The chemo I received was more than what I had been getting in the past. I had chemo on Friday night and Saturday night.  Bright and early I went down to Radiation on Sunday morning. I received Radiation on Sunday, Monday and Tuesday and I  have the tan to prove it.  It's mostly dry skin now. The first few days in the hospital I felt great. The chemo never really hit me until day 3.  Once I started the full body radiation I went downhill from there.  It hit me like a ton of bricks. I was very sick the next few days and really tired. Then on Wednesday, November 23, 2011 I received the transplant. We started about 8:30 in the morning. I was given some pre-meds to help with the side effects and then the first bag was hung.  The whole process took about an hour to do. Cody's donation had a total of 4 bags.

For the first time that week I felt amazing. I had energy, I didn't feel sick to my stomach and I thought this is going to be a breeze in the park if its this easy.  Mom, Dad and Cody showed up later that day and visited with Josh and  I for a  good portion of the day. It was Wednesday night so we all had our shows on ABC so mom, dad and Cody left a little early so they could go watch the shows in their hotel room. Josh and I both enjoyed watching our shows with out the kids there screaming throughout them.

The next day which would have been Day +1 was another story. I was sick to my stomach and had multiple other problems going on. The Dr. said it was normal to feel like that the day after transplant so they were not going to push me into doing much that day.

On Day +3 we were able to move up to Co-op Care which is still part of the inpatient hospital but Josh takes over as my primary care-giver. He's responsible for making sure that I get my medications on time. He has to take my vital signs and record the information in a book for the nurses and Dr's. We do still have a Nurse that will come in and help with anything that we may need. She also is the one responsible for any narcotics that I may need. All of the co-op nurses have been pretty amazing. It's so much nicer here in Co-op because you have freedom. The staff doesn't come in every hour to check on you which I think gets really annoying. We can't leave the hospital grounds and Josh can only leave me unattended for 20 minutes at a time for bathroom breaks, laundry, going to the cafeteria, etc.Every morning we walk down to the treatment center where the Dr's. will make their rounds on the Co-op patients. The Dr that has been making rounds on us for 2 weeks is Dr. Faber and he lived in Pittsburgh so now Josh thinks that he is the best Dr. in the whole world. One morning I had the privilege of listening to those two discuss Pittsburgh football and hockey for longer than I would of cared for.

I am now on Day +11 and doing really well. The Dr. keeps telling me that I am ahead of schedule so that's a bonus. My counts have started coming back up so I have officially engrafted Cody's cells.  That doesn't mean I'm quite out the woods yet. I could still experience Graft VS. Host Disease but we are keeping our fingers crossed that it doesn't happen especially with all the medications I'm on to prevent it.

Thank you to everyone that has kept me in their prayers. I know we needed them and I will continue to take as many as I can until we know for sure that this 100% in my past.

The Transplant

I met with my Dr. right before I went into the hospital for my chemo treatment in September and he informed me that he would like me to meet with a bone marrow transplant specialist "for just incase purposes" He was concerned that if I needed a transplant that he didn't want me to complete all 8  months of treatments and then end up having to have a transplant at the end of this ordeal. If I couldn't find a match within my family it could take 3 months to find a match in the donor pool and he didn't want me to wait that long if this was something that I needed to happen.  I was incredibly confused by this news because I was informed that I was responding really well to the chemo so I had an incredibly hard time with this news.

So once I completed my September treatment Josh, mom and I went to Omaha and met with the specialist at UNMC. She informed that I would need to undergo a transplant. I cried. I had a hard time concentrating on what all was said that day because it was a lot to take in. I'm apparently missing some chromosomes that make me more likely to have 2 types of cancer but I do only have ALL. So that's a bonus that I do only have one type of cancer. The Dr. said that because of my age I would be a great candidate for a transplant because this is only to make it more likely that I will not get cancer again but if it does come back then I am pretty much screwed (my words not hers). If the cancer does come back after trasnplant I will not be able to have another transplant done because it wouldn't work and we would have to attack it more aggresively than we have already with even higher doses than I have had already and it's still not a guarantee that I would make it through it a second time. So now I'm even more worried and for a long time I didn't want to go through with the transplant because of that reason. I have now decided that it is the best option for me and my family.

My brothers were both tested to see if I had a match. Nic did not match at all but Cody was a  perfect 10 for 10 match. Before we even found out that Cody was a match my mother told me that she now knew why God blessed them with Cody and it was to help save my life. This broke my heart. The kid is 14 years old and it is so overwhelming for him. He is completely freaking out about the whole thing and sometimes I wonder if he can go through with this. Tonight he was having an anxiety attack because we officially found out that this is a go and it is going to happen within the next few weeks.  He was very stressed out but I don't think he fully understood what this meant. I told him tonight (for the second time) that if he can't do this then I don't want to force him to go through with this but I wanted him to think about the fact that if he can go through with this then he would be saving my life. No one had told him that until tonight. I think he finally got it and realizes the severity of what this means. He is still scared to death about the process but for him it is really simple compared to what it used to be. In the olden days the donor would be put to sleep and then have bone marrow extracted with the giant ice pick up to 70 times in order to get enough bone marrow to donate. The process is easier now. Cody would have one IV placed in one arm where blood would be withdrawn from his body. The blood would go through a machine and this machine would separate the stem cells for me and then return his blood to him in his other arm. He would have less blood out his body at one time then he would have if he were to give blood.

I would be placed in the hospital for 5 days before the actual transplant would take place. The first two days that I would be in the hospital I would be receiving even higher doses of chemo than I have had to date. The next three days would be to receive full body radiation that is meant to kill everything in my body and then on day 0 the transplant would take place. I would have to stay in the hospital for 2-3 weeks after the transplant. Once I am released from the hospital I have to live in Omaha for 100 days. I have to be within 30 minutes of the hospital incase I needed to be admitted for any reason. I also have to have a 24/7 caregiver. Someone who is to never leave me unattended and who can get me to and from the Dr. office twice a week for appointments. After many thoughts and discussions we have decided to rent a hotel suite after my release from the hospital. It would be easier for everyone since I will not have an immue system after transplant. My mom has been gracious enough to take her family medical leave act and move to Omaha with me to help take care of me.

I am still not sure if I will have to have another round of chemo in November or not. They would like to have the transplant done before that option comes up. I told them that I would like to have the transplant done as soon as possible so I will not have to be in the hospital over Christmas and it didn't sound like that would be an issue. So now I need to get busy. I have to get my Christmas shopping done and presents wrapped. I need to make sure that I have everything that I need for an extended time away from home. I have to figure out how my bills will get paid.I have been the one to take care of this family so it's really difficult to have to be away so for so long.

I'm not going to lie the idea of a transplant scares the shit out of me but I'm still trying to convince myself that this is going to be the best thing for everyone and that is incredibly hard to do. I know I have an incredibly amazing support system behind me. Not only do I have an an amazing family that will be there for me I also have a new family that I know will be there for me too. The nursing staff at Bryan West has been amazing throughout this whole process already and they have been there to answer my questions and to give me a shoulder to cry on and I couldn't ask for better people in my life. I'm sad that once the transplant happens I will not have the girls for my nurses any longer but I know if I called anyone of those girls to talk they would be there for me. Although it's against the rules to become emotionally attached to your patients I am so damn irrestible that it would be hard not to become emotionally attached to me. 

So am I ready for this? Hell no! I need to get ready emotionally, physically and spirtually and I am running out of time to do so. I got to put my shit in order and suck it up and get it done. I know I will but it still feels like a ton of stuff has to be completed beforehand and it's always scary to wonder if I can get all my ducks in a row before this goes down.

Ouch that hurt like HELL!!

I was in the hospital again last week and while I was there I had a another bone marrow biopsy. For those of you that aren't sure what that entails it is a vey large metal ice pick looking thing that they shove into my butt to withdrawal blood from my bone. Hence, the title that HURT LIKE HELL!! The needle that was used wasn't long enough so the Dr. had to really dig in there and yes I did quite a bit of hollering and crying. I got a call this week with the results from that peocedure and I am now looking at 1% of the bad stuff in my bone marrow. I am unsure where we started at the beginning but the Dr.'s were very happy that we were at 1%. I am responding very well to the chemo treatments but I still have to go through the next 5 months worth of treatments.

Josh's Promise

Before I even got sick I would always tease Josh about him getting himself  a new wife. He's always told me that he doesn't want another wife that I'm the only one he wants and if he can't have me for any reason then he will be a bachelor for life. That makes me sad. Especially now when reality sets in and it could be an option. I made him promise me last night that if something does happen to me that he would get a new woman in his life. At first, he was hesitant (probably thinking I was trying to trap him). He was upset that I talk like that. I said to him that I may not die from cancer but I could be in a car accident tomorrow. You never know what life has in store for you. In a perfect world everyone would live to a ripe old age and be blessed with lots of love. But in 2010 I lost a lot of friends and have realized that is not an option.

So the promise was made, mostly through my tears that he would find himself someone else to love if it comes down to that. It's not fair to him that he would have to spend the rest of his life alone. He is an amazing man who deserves to be happy. He has really stepped up through my diagnosis and treatment that I know I would want him to always be happy. He deserves it. Not only does does deserve to be happy but I believe he deserves to have someone to share his life with. He deserves to have a woman that he can be best friends with, compassionate with, intimate with, a woman that will make him happy if I'm not there to do the job.

I also believe that my children deserve to have a new mom in their lives. They didn't make the choice to have their mom go through all of this. It's not fair for the kids to have to go through this at all. My children deserve to have a woman in their life that will teach them everything a mom would teach you throughout your life. If there was no woman in their dad's life then they wouldn't have that either.

I'm not saying that I want Josh to go out and find a woman to replace me as soon as possible but I also don't want him to be alone for an extended period. He is an amazing man and I want him to be happy.  So if I die from cancer or if I get in a car accident or if I get caught in a cattle stampede I want someone to make sure Josh follows through with his promise. Not only does he deserve happiness but so do my children. I want the best for them all and if I can't be here to make sure that happens I want another woman to step in and make it happen for them.

The Benefit

So the big benefit was held on July 15th at First St. Pauls Church. I was not feeling very well that day. I actually had gone to the Dr earlier in the day and was told that I had a sinus infection. So on top of suffering from Chemo effects I also had a terrible headache along with the sinus infection.  So with all of that I still had a benefit to attend.

The benefit was a HUGE SUCCESS!  Thank you to all who attended and helped out. We had close to 500 people attend. Over 130 items on the silent auction. Since I wasn't feeling well I was unable to look at the auction items but I know we had some great things there. Everything and everybody's hard work was greatly appreciated.  I'm sorry if you were there and I was unable to see you but there were lots of people and with not feeling well I wasn't that socialable.

Once again, THANK YOU!!

Hair....do you really need it?

I've started to loose my hair within the last two days. It's coming out in clumps. At first I had a mental breakdown and bawled my eyes out. I knew it was coming but it was still hard to see clumps of your hair in your hands. Josh, the incredible man he is, was there for me. He told me that for all I know I may enjoy being bald so much that I may choose to shave my head once my hair does start to grow back. I laughed at this and asked him how he would feel to be married to the bald lady by choice.

Today I lost a fairly large amount of hair and I put it in the trash can. Kaitlyn must of saw this and asked my mom what it was. My mom told her that I was loosing my hair because I'm sick. Josh and I weren't here at the time to help answer her questions but Mom did a pretty good job of it. I've told Kaitlyn that Mommy has cancer and that means I'm sick but I don't know if she fully understands. Josh and I sat down with her again tonight and told her that Mommy is sick and the medicine that she has to take is going to make her loose her hair. We joked a little and said that I would have a bald head like Daddy. She wrinkled her nose at that. She wanted to have the bathtub cleaned out before she'd get in it tonight because she said the hair was disgusting. (Not clumps just a few strands) Josh jumped on her for saying that. I think he doesn't want to upset me but I told him that it is disgusting that Mommy is loosing her hair and its okay for Kaitlyn to feel that way. 

So hair.....do I need it? No. Would I like to have it? Yes. Will I eventually get it back? Yes. In the meantime am I going to wear wigs? I don't know. For right now maybe I'm still in denial, maybe I'm not ready to take the next step but I'm not ready to shop for hats, I'm not ready to shop for wigs. I'm not ready to loose my hair. But reality is setting in and it sucks.

Someone make me a promise though. If I ever tell you that I like my bald head and I plan on shaving it bald once my hair grows back DON'T let me do it!! Take the clippers away!

My Odds?

I discovered something that I wasn't thrilled to learn. First of all, apparently when you are doped up on pain medications you miss a LOT of conversations between family members and medical professionals. So, we went to a Dr. in Grand Island the other day to see about transferring my treatments closer to home so we didn't have to travel as much. This Dr. informed me that my circumstances are very grim. Really? Not something I wanted to hear. Apparently my type of Leukemia (Acute Lymphoblastic Leukemia ALL) is incredibly rare in adults. This I knew. What I didn't know was how rare. In a nine year time period one of the big research hospitals in Texas was only able to see 33 adults with my kind of cancer. The study took place in Texas at a rather large hospital that sees people from all other the country and only 33 of these people had ALL. So now I'm a freak! :)

The Dr. in Lincoln has informed me that once I go into remission I will have a 50/50 chance of staying there. Seriously? I feel like throwing in the towel for those odds. I don't want to give up but it doesn't seem like very good odds to me. I spoke to a good friend today and she informed to not look at it negatively. I need to focus on the fact that 50/50 is better than 80/20. I agree with her but it's still hard to do. Thank you Jessi for helping me see that I can still beat this and I have a 50% chance of being healthy for the rest of my life. You are a great friend and sometimes you need someone to show you the positive and today you did that for me. I am truly grateful for you and I will always be indebted to you. Thank you!