Thursday, January 29, 2009

Long overdue update

Sorry it’s taken so long to update; I went to the library last week and tried to post but the internet wouldn’t stay up so I basically wasted an hour.

Breanna turned nine this month, we had a small party for her, and took her to Build-A-Bear (I think Ricky liked her gift more than Breanna did).

I went to see Dr. Cripe on the 12th where another bone marrow biopsy was done, and I am currently still in remission. I still had a really bad cough so they sent me down for an x-ray. After that I went to see the Bone Marrow Transplant team. They wanted me to do a clinical trial, in which I would possibly avoid getting Graft Versus Host Disease; the only thing is that I would be the first patient at this hospital to receive this treatment. So after a week of pure torture we decided to go with the clinical trial, we have to wait and see if the donor will also agree to be a part of the trial (extra blood work involved), and if my insurance will agree to the trial as well.

The results from my x-rays showed spots on both of my lungs, so that Friday they had me come back for a Cat Scan, they called me back and told me that I had pneumonia and they wanted me to see a pulmonary specialist. So last Tuesday I went to see Dr. Lykens and they wanted to do a biopsy of the inside of my lungs to see if I have a bacterial or a fungal infection, they already had the surgery scheduled for Wednesday. Rick brought me to the hospital for that, (good thing) because they ended up collapsing my lung, when I woke up from the anesthetic I was gasping for air; and my back was killing me. So what do they do? They bring Rick in to try to calm me down, while they got the x-ray technicians up to the room, Rick looked like he was scared half to death. They confirmed that my lung was collapsed, so they took me back to the O.R. to insert a chest tube. Please let me tell you that I have had a lot of surgeries and procedures done in my lifetime, but nothing even comes close to what that felt like… I have never felt so much pain ever… plus when they got the tube inserted I could hear my lung fill back up with air. So then they had to admit me to the hospital, they had to end up giving me pain meds every two hours, because that tube was inserted in between my ribs and kept me in constant pain.

The next morning some of the doctors came in and said that I would be allowed to go home later that day. So I was pretty excited. But then Dr. Lykens came in and said that the initial biopsies had both came back negative so far (but that the cultures for the bacterial and fungal infections take up to two weeks to come back), but if in two weeks they were still negative they would want him to do another biopsy, in which they would have to insert a needle into my lung which would collapse my lung again, which meant that I would have to have another chest tube inserted. So since I already had one in they wanted to go ahead and do the other biopsy while I still had the tube in. The earliest that they could get that scheduled was Friday morning, so I had to leave the chest tube in another night. The day of the biopsy they took me down to a Cat Scan where I had to lay down on my stomach on the table with a chest tube in (painful) and they had to keep taking pictures, they were trying to get a guide just right in my back (and into the spot in my lung) so after about 18-20 tries they finally had it in the right spot, so then they pulled out a needle about 18 inches long and slid it through the guide and kept pulling it in and out over and over then they would put those cells on a slide, and do the same procedure again, and again they needed seven slides but they wanted to make sure that they had enough samples so they took nine slides, and one extra one that produced no cells. Later that afternoon they sent a couple of Doctors in to pull my chest tube, I asked her if it was going to hurt, and of course she said no. LIAR!!! But it did feel much better once it was out. I got to go home around 3 on Friday.

Saturday evening I started thinking about what one of the Doctors had said to me (at the time I really didn’t pay too much attention to) by Sunday morning everything kind of clicked (the doctor’s comments, the kind of biopsy that was performed); that last biopsy they did was to see if the cancer had spread to my lungs. So when I go back to see Dr. Lykens on Thursday, I’ll be finding out if my cancer has metastasized or if I just have a really bad infection. No stress there.

So we just kind of hung out around the house this weekend, if I went anywhere I wore my mask, to try and make sure that I don’t make myself any more sick than I already am.

Last night after Rick left for work, Ricky and Breanna were already in bed, when they both came back downstairs for a drink of water. Afterwards Ricky came over to me and hugged my neck, and gave me a kiss & told me that he loved me, and then he said, “Mommy, if you die I’ll still Love you.” (It choked me up and I almost cried), but I said, “Baby, hopefully mommy will be here for a long time.” He said, “I know, but if you die I’ll still love you.” And he gave me another kiss and went to bed. MAN… how do you handle that???


I saw Dr. Lykens today, and my cancer has not metastasized although they still do not know what is wrong with me. He wants to run another CAT scan in mid-February to see if the nodules have cleared up or gotten worse. His exact words to me today were that I am in between a rock and a rock where my lungs are concerned. If I do have some sort of infection and they don’t have it cleared up by the time I have my Bone Marrow Transplant then it could prove life ending. So I have to go see my BMT team next week, and Dr. Lykens will set in on that meeting, so that we can work out some sort of plan. Anyways God has answered my prayers, I don’t have to go home and tell my husband and children much worse news.

Friday, January 09, 2009

Things are going well

I meant to update earlier this week, but I have been sick for the past 3-4 days. After dinner every night Rick makes me take a pain pill and it knocks me out until it’s time for him to leave for work.

One night Ricky and I went upstairs to wake Rick up, and all of the sudden I got really hot and had to make a bee line to the bathroom. When I got back I laid down next to Rick and Ricky came up next to the side of the bed and laid his head down on my shoulders and started rubbing my stomach. He’s such a sensitive boy, just like his daddy. He constantly stops what he is doing and comes over to give me a hug and a kiss.

Ricky and Breanna were talking about the sports that they wanted to play this spring, and trips that they were looking forward to taking. I had to sit them down and explain to them that because of what I’m getting ready to go through they won’t get to do any of those things this year. They were disappointed, but understood. I feel so bad to take that away from them.

I go to see Dr. Cripe on Monday the 12th for a follow up bone marrow biopsy, to make sure that I am still in remission, and from there I just found out that I will go to see the Bone Marrow Transplant team at the main hospital (for my interview) they will go over what to expect and see if I am truly interested in going ahead with it.

I spoke with Jay (the nurse from the BMT team) last week, and he said that they had not yet found a 10/10 match, but they had found three 9/10 matches, and they were already doing further tests to see who would be the best match for me. So it looks like everything is just about ready, while I don’t want to wait forever to get on with this, I hope that it doesn’t take off so fast that I don’t have time to get things together.

Other than that everything is fine, the kids are all doing well, Breanna made the honor roll again (she’s so smart). I get to see Courtney’s report card tonight. Khrystyne is going to be my caregiver when I get out of the hospital… We’ll see how that goes (she literally had to wash the same dish three times to get it clean this week!!) She is a good kid, but my mom will probably have to help out.

Ange my best friend who lives in FL told me that she is flying out when they do my transplant, that she wants to be here with me through that. Who has this kind of friend? After I hung up it made me cry, but I really do have great friends and family, and of course I have the Lord so how can I go wrong?