Saturday, April 11, 2009

Day +24

Sorry I've been AWOL the last few days, I wouldn't have time to tell the whole story. They finally took me off the TPN, no sooner than they did that. They started sending up all of the specialist. At first they suggest that it may be VOD, and they they thought that it may be related to my Liver. They even suggested taking a biopsy of my liver. I've had a doppler ultrasound, a CAT-SCAN, they've done another EKG, and an x-ray, then they they did a biopsy of my lower arm that came back negitive for GVHD. So they put me back on the feeding line (TPN). My kidneys and my liver are currently failing, so on Monday they have me scheduled for a Biopsy of the liver, and I may have to go on dialisis to help my kidneys out.

Within 4 days last week I have gained 28 pounds (in less than a week), my legs are swollen My eyes are yellow and it looks like someone punched me right in the eye because I have a bruise all around it. If I have to go to the bathroom I have to call for a nurse to help me up off of the bed. They are going to take me off of the TPN tonight and see if I can get some food down. I currently look like I'm 8 months preganat, but it is just all from the swelling.

Today after Rick left to go home my Doctor came in to go over some results, and that they would be doing a biopsy of my liver. She asked me how I was feeling, I said to be honest I'm really scared. She said yeah we pretty scared too. Thank you...??? Nice reassurance. I am in alot of physical pain. Oh and did I mention up until about Wednesday they were talking about sending me home.

Veno-occlusive disease (VOD)

This is a complication that can happen during the first 30 days after transplantion from the high doses of chemotherapy that you recieve. VOD affects the liver and makes it more difficult for your liver to function properly. Weight gain or fluid collections in your abdomen, abdominal pain, and an increase in your total bilirubin are all signs that you will be monitored for during transplation. VOD can be mild or severe and although some patients recover from this complication, VOD can be fatal.

Please keep my family in your prayers.

Wednesday, April 08, 2009

Day +20

I'm going to do the very best that I can as far as posting today. I've been given so many different medications, that I can hardly stay awake.By the way Joe thanks for the advice, it has definitely been worth it, and has made my time here go so much faster.

All yesterday afternoon, they pushed fluids through me, So much so that my stomach is very Swollen. The doctor last night said that everything else was looking really good. This morning When I uncovered my feet my left foot was HUGE!!! Plus I have some terrible rashes that are out of control. They are giving me some sort of water pills through my I.V. so far it's not doing it's job.

I'll be very honest, I'm scared. They have no idea whats going on, So they sent me down for a CAT-SCAN, and a Doppler ultra sound. That woman liked to have killed me. She pushed that Doppler deep in my groin, and deep into my legs. All I can say is, MAN that really hurt, I was crying like a baby when she was finally done.

Well the doctor just left and she is going to send me back downstairs to have have more tests done. The rashes seem to be GVHD related (hopefully that will be ok, as long as it stays mild.)
Needless to say I'll probally not be able to go home this weekend.

Tuesday, April 07, 2009

Day +18

Well we finally got my nose to stop bleeding.They want me to stop getting fed with the TPN. So when they unhook me tonight, they won't be putting it back on. They want to see how I handle food on my own without any meds. So sometime in the next few days I have to get Diabetic education so I can do my own insulin shots when I get out. The doctor said that they are hoping on on sending me home by this weekend.

Today is Rick and my anniversary, we've been married for fourteen years. Um... it's safe to assume that I didn't realize that I was still going to be in the hospital, for the big day.

I have been in and out of it all day, so needless to say each and every time I was holding a glass of water I fell asleep, and only woke up when I felt the water dumping out all of me. The nurses were not mad because they had to keep changing the bedding, but instead they found it very funny. Mary my nurse for today took my blood pressure and when she went to tear the cuff off of me I about jumped out of my skin, because I had already fallen asleep sitting straight up.

Monday, April 06, 2009


What kind of drugs do they give to cancer patients? I have never been high my whole life, wouldn't even concider it. These past two days I have definately been high. I can't keep my eyes open, and when I do wake up I find myself takling out loud. I called Rick I can't tell you how many times this morning. One time he asked me, "What are you talking about? I said, I know you saw my mother she was supposed to go to the hospital, why won't you tell me whats wrong with her." He said April what in the world are you talking about.

Then I had several nurses come in and they knew that I was out of it, so they were all laughing at me. (Question: Is that professional?) I'm just kidding I would laugh my butt of if I witnessed something like that.

Finally around 1pm I woke up. my nurse came in and asked if she could take some blood for my glucose test, I looked her straight in the eye and said, nope! She just stood there dumbfounded. I said, I was just kidding. At least I got her back for laughing at me this morning.

The gel that they put in my nose is supposed to melt within 48 hours. Then I'm going to try to eat tomorrow, the faster that I can eat, and walk the sooner I can get out of here.

Sunday, April 05, 2009

Day +16

Well last night you guessed it I fought with a bloody nose, this morning it had finally stopped. So this morning I got ready and went for a walk, I walked the hallways twice. Went back to my room sat in the chair and then I decided to take a nap I sat down on the bed put my water on my side table, looked down and then my nose started gushing again. I called for the nurse and we had to pack my nose again, and again, and again. FINALLY they decided to call down the Ear Nose and throat specialist. When he came up he took this huge thing out of his bag it looked like a giant pair of tweezers. He ended up pulling out two huge blood clots out of each side of my nose, and two huge blood clots out of the back of my throat. They ended up putting some sort of gel up both sides of my nose it will take two days for that medication to melt. So for the next few days I have to eat, drink and, breathe through my mouth.

My aunts ex-husband, and father to two of her children died this morning, he had brain cancer, and told him that he had 24-48 hours to live. My aunt Robin had a stroke when she was 44 (she'll be 51 in June). So she has been living with my mom for the last few months, because she is paralyzed on one side of her body, she still has seizures, and strokes. So when she found out that Pete was dying it really hit her hard, because they had still remained friends over the years.

Other than that every thing seems to be going ok. They are looking at sending me home later this week.

Saturday, April 04, 2009

Day +15

Last night I was up almost all night for, you guessed it a bloody nose. We finally got it under control in time for Rick to visit, then he left to go pick up Ricky and Breanna. Not too long after that my bloody nose was back. (They gave me platelets at 5am) within a few hours it was back under control.

I called mom to see how the kids were last night. She said that they were fine, but they were still there, and my husband was asleep on her couch. Around 1:30 I called her again and she said that Rick was still asleep. I had her to wake him up so that I could talk to him. He finally got up and then he text me a picture of Ricky and Breanna with their new bunny. I called him back to see if it was a real rabbit or not. My mom and her husband got them a rabbit for Easter. I told her that they couldn't bring it home, that's one of the instructions they gave me about coming home. We cannot have a new animal for a year. She said that she knew that, and they were going to keep it at their house for the kids.

After that phone call I was lying down, I sat up and my nose started gushing blood again. This time it wouldn't stop. They had to use a suction tube to get the blood from the back of my throat. About two hours later I was throwing up straight blood. The nurse called the Doctor on call, and they gave me a second bag of platelets, and packed both sides of my nose. FINALLY about 1 1/2 hours later we got the bleeding to stop. I'm so exhausted.

The good news is my White Blood Cell count if finally starting to come up it's 3.1 today, and I was just given my last neuprogen shot. The doctor said that I need to start working on getting solid foods down so that they can get off of this TPN. Because it looks like next weekend I'll be going home. According to the doctor, platelets are the last count to come back up. When I first go home I'll have to come back up to the BMT unit so they can give me platelets, and red blood cells as needed.

Friday, April 03, 2009

Day +14

I had a rough night last night, I had a nose bleed ALL night long. Actually it still has not stopped, but they have already given me platelets, and I'm currently receiving one of two bags of blood.

A friend of mine stopped by last night (Stacy) we used to work together. She brought my Christmas present that she had never gotten around to giving me, a really nice scarf, two hats, and a pair of gloves. At least I won't have to buy any new ones this fall. She also brought me a People magazine (YEAH) although I have to read it in segments, most of the time I can't keep my eyes open long enough to read anything.

The nurses just told me that my white blood cells are coming up nicely so I only have to take the Neuprogen shots for two more days!! I can't wait those shots hurt so bad, I dread taking them.

Thursday, April 02, 2009

Day +13

Finally: My counts have finally started to come up. Until last Friday my white blood cell count was <.2, Saturday it went up to .4, Sunday and Monday it went back down to <.2, Tuesday it was .2, Wednesday it reached.4 again, and today I have 1.0. Which means I have 1000 white blood cell counts. I have to have 2000 several days in a row before they let me go home.

The rest of the counts are:
Red blood cells - 8.0 (when it gets under 8 I have to have a Blood Transfusion.
Platelets - 27 (I've received platelets both yesterday, and the day before)

I'm feeling much better, still having issues with bloody noses. This morning when Rick came to visit we walked the hallways twice, he had to push my I.V. pole for me because they are making me walk with a walker for now, until I get more stable when I walk. All of my doctor's and nurses commented how well I was doing. I'm making good progress according to them. Walking with a walker is a little odd, but it was much easier.

When Rick came up for his visit this morning he said that I'm starting to get some color back onto my face, even the nurses have made some comments to that effect today. Up until now I've been a gray color with red, and black circles around my eyes.

Stacy a girl that I used to work with is coming up to visit this evening. I'm pretty excited, I've not had too many visitors since I've been up here. It does get lonely.

Tuesday, March 31, 2009

Day +11

Last night I didn't sleep well, I was up and down all night running to the bathroom. Today I couldn't stay awake to save my life. I had a nose bleed that started early in the morning, and lasted until late afternoon. They had to pack my nose three times.

When the night nurse came in to do vitals she gave me my evening med's and went on to her next patient. No sooner did she walk out of the room did I start throwing up, and yes that included all of my evening med's.

Rick stopped by this morning for a couple of hours he took me for my little walk, actually I think that is when my bloody nose came on. He sat up here with me until we were both falling asleep. So I sent him home, since the kids are on spring break this week he said that he was going to come up everyday to spend some time with me.

He was surprised to see me completely bald this morning, I don't even have stubbles. I don't know if I'm going to post tomorrow, because that worm is supposed to attack computers. If not I will post on Thursday.

Monday, March 30, 2009

Day +10

I'm still doing pretty good today. A few issues last night getting sick, and a nose bleed off and on all day today. Other than that I can't complain.

It's currently 8pm and my TPN (I.V. food) should be here any minute. I haven't eaten in four days, and am soooo hungry!!

My daughter Khrystyne got a tattoo this past Saturday. According to her dad it's not a small tattoo... Every time I go into the hospital those girls manage to do something to themselves that I don't necessarily approve of. First, Khrystyne and Courtney both dyed their hair black. Second, Courtney pierced her nose. Third, Courtney pierced her eyebrow. Fourth, Khrystyne got a tattoo, and of course Courtney now wants a tattoo... They manage to do all of this while I'm in the hospital. I don't know what to do with these kids... I guess Khrystyne is 18 so I don't have too much of a say, but Courtney is only 15 (almost 16). You would think she should listen to us.

Other than that I slept pretty much most of the day today so I don't have too many updates. I did want to thank everyone who has left comments for me, it really means a lot.

Sunday, March 29, 2009

Day +9 (Ask and ye shall receive)

Wasn't it just yesterday that I said that I can't wait for the day that I can post without a complaint? Well today just happens to be that day. Last night was pretty rough, so this morning after I read my Bible and had my morning vitals taken I took a nap right off the bat. When I woke up I felt great. They won't let me eat or drink anything but water, tomorrow they will start nutrition through my I.V. Other than that today went great.

Rick came up here to visit with me a couple of hours before Holly and the kids got up here. I talked my nurse into letting me have a 7up since I had not thrown up all day. She brought me the 7up, I took one sip and it felt like my whole mouth was on fire, lips and all. I guess the mouth sores are finally here. But hey I tried.

I've not had to have an insulin shot all day (of course I'm not eating), but still no shot is no shot.

Rick brought a movie up for us to watch, The boy in the stripped pajamas. Wow, what a story. I never saw the ending coming, it was very moving. Afterwards I had Rick take me for a walk around the block so to say, it was very exhausting!!

Holly brought the kids up around 2:30 and they all stayed for awhile for a nice visit Little Ricky kept pulling his mask down to give me a kiss, and he kept coming over for long hugs... At first though all of the kids kept their distance, because my whole face is red from me rubbing it all of the time, my eyes are even puffy. But eventually they came around.

Rick told Holly (my sister) to bring the kids up to the hospital so that way he could take them home from here. She told him, "Well I don't know I'll have to check and see if that's ok." He said what do you mean? Then she finally told the truth and said that she doesn't know what to say. He said, "Holly just go up there and see her, she's happy just to get a visitor." So she finally agreed to meet him up here. Which brings up the point Rachel (my other sister) hasn't even called me these past two weeks little lone come up here to visit with me.

After they all left I took yet another nap, woke up and visited some of the blogs that I follow. So all in all a pretty good day today.

Saturday, March 28, 2009

Day +8

I'm going to keep today's post short. This morning around 7am I was blessed with yet another bloody nose. This time though it lasted for FIVE hours!! They had to pack my nose twice, and I went through yet another box of Kleenex...

This part is gross so if you have a week stomach I suggest that you skip this paragraph. When they packed my nose the first time it was bleeding so bad huge blood clots were coming out of my nose, and a couple of times I spit up blood clots. So anyways when they packed my nose the blood had nowhere to go but down the back of my throat (GROSS!!) I told the nurse that all of that blood was making me sick to my stomach, so she went to get me something for nausea I got sick and threw up half a bucket of blood. Now another nurse had come in with Esta (my nurse) took one look at what was coming up, I thought she was going to get sick.

I haven't been able to keep ANYTHING down, but I was so hungry that I ordered Breakfast, and Lunch only to have them revisit me 1/2 hour later. They gave me a bag of platelets, and two bags of blood today. When my doctor came in this afternoon she alluded to the fact that I would not be getting any better for a few more weeks. Let me tell you I'm looking forward to the day I can post that I had a really good day, with no complaints to blog about.

To answer Christina's inquiry, the picture on my blog was taken a couple of weeks before I was admitted to the hospital (my six year old son took that picture of me), and three months after my last chemo. I do not look like that right now believe me!!

Rick and the kids are coming up to see me tomorrow afternoon, I can't wait I haven't seen them since last Sunday and I really miss them. I'll post more tomorrow.

Friday, March 27, 2009

Day +7

Yesterday morning I woke up at 2:30 and couldn't go back to sleep. I knew the nurse was supposed to come in and draw labs at 3:30. Right before she came into my room my nose started to bleed. I ended up having a 3 1/2 hour nose bleed, using a whole box of Kleenex, and having to get both sides of my nose packed with gauze. They didn't even wait until my blood work came back they just gave me platelets. When the cleaning lady came in to clean my room, she went and found my nurse to make sure that they were aware that I had a whole trash can full of bloody tissue.

Last night I ended up sleeping pretty well, but when I woke up this morning I had the worse headache ever. Rick came up for a visit this morning so he was here when my two morning nurses were taking my vitals, getting approval for more pain meds, and giving me my morning meds through my I.V. When I told them that I needed something for nausea, so Beth went to get something for me, when I grabbed my pan and started throwing up all over the place. Poor Tasha, she couldn't go anywhere because the meds that she was putting into my I.V. had to be administered over three minutes. Afterwards Rick said, "Does it always come on so quick?" Of course sometimes it does.

Next the doctor comes in to check out the stomach pain, and to say Good-bye. She is going to another hospital. So right before she leaves she says, "By the way, just so you don't hear this on your way home in a few weeks, we're pretty sure that you're diabetic. When you were admitted into the hospital your sugar was 213, and you've been off of steroids for over a week and are still requiring insulin." (Gee doc THANKS) Of course Rick was still here so he heard it for himself.

I'll be glad when my counts finally start coming back up, I'm so tired of being sick. I've got another week or two for that to happen. I'm already ready to go home.

Wednesday, March 25, 2009

Day +5

Ricky and Breanna's Easter Picture

I guess things really aren't going to improve much for me for a couple of weeks, according to the doctors. Rick stopped by this morning and I talked him into walking me through the hallway before he left. WOW I cannot tell you how unbelievably hard that little walk was. I had to hold onto the railings as I walked, Rick looked like he expected me to collapse at any moment. Every other move that I made he reached out like he was about to catch me. All of the nurses kept pointing out chairs for me to sit in along the way. To be honest if I had sat down I wouldn't have been able to get back up.

I did not need blood products today, but I am certain that I will need platelets tomorrow, I've had a bloody nose now for the past two hours. Not gushing but annoying. I'm still hardly able to get any food down, I must have blisters in my throat because as of this morning I can no longer swallow pills. They either put them in my IV or I have to take it in liquid form (YUCK).

I do feel a little better tonight than I did earlier today, at least that's something.

They have been giving me all of my insulin shots in my stomach, today I looked down when she was giving the shot and my whole stomach is black and blue.

I think my teenagers are having a hard time with me being in the hospital this time, they both call to check on me. Courtney always asks me how I'm doing, of course I tell her that I'm fine, then she says you don't sound fine, or you're lying. Today Holly (my sister) called and said that Courtney called her last night telling her what she thought, and had Holly call up here today to check on me.

Tuesday, March 24, 2009

Day +4

Last night was another rough one, with still the same old things going on. They gave me anti-nausea medicine, not two minutes later I was getting sick all over the place.

The check my blood counts everyday so that they can adjust my meds as needed. The doctor came in this morning and said that I was a couple of percentage points away from being fed through my I.V. I kind of knew that one was coming I'm still not really able to eat, and I'm starting to get blisters in my mouth and throat, and now today I've got a nice rash started on the top of my hands (GVHD?)

I finally fell asleep this morning around 6am but at 7:15 Rick came in for a visit. But I was able to get some rest after he left. This afternoon I am feeling a little bit better, they wouldn't let me go out for a walk around the unit today because my counts are still too low.

Breanna loves to read and is on the A B Honor roll at school. She started reading Harry Potter this weekend and is already on chapter 5 all by herself, she's only in the third grade!! Rick said that he went upstairs to tuck Ricky and Breanna in last night, their bedroom light was on and they were both lying down reading a book. I'm glad they both have an interest in reading at such a young age.

Well I think I'm going to make another attempt at a nap. Thanks for checking in.

Monday, March 23, 2009

Day +3

Today was more of the same, although I think they have finally worked out all of the kinks as far as my pain meds, and nausea meds are concerned. I didn't have any visitors today, but I did get a few phone calls. Everyone that I talk to on the phone always asks me if I was sleeping, Rick said that I just sound really week.

Tomorrow I think that I'm going to attempt to walk around the unit at least once, to try to build my strength up. I've literally been in bed for the past three days. When I get up to go to the restroom my legs shake like a feeble old lady.

The doctor's said that everything is looking good so far. I'm posting a picture of the day they did my Bone Marrow Transplant. My friend Shirley had come up from work to sit with me while I had the procedure done.

They had to give me a bag of platelets today, I'll probably need blood tomorrow. After the platelets my headache finally lifted a little bit. I still don't have an appetite, I probably didn't even consume 500 calories today, but my weight is still staying the same.

Khrystyne and Courtney are helping out around the house. Trying to keep the biggest load off of Rick. I'm really proud of them, they are taking good care of Ricky & Breanna.

Sunday, March 22, 2009

Day +2

Not a whole lot happened today just a lot of sleeping, taking meds, and getting sick!!! I finally got up after noon and got cleaned up and changed (I felt much better) I spoke to Rick and the kids on the phone all day, they were going to a cookout at my sisters house it's her birthday. They were supposed to come up to see me at the hospital after visiting with them for awhile. Finally I just got to tired waiting for them to show up, so I finally just fell asleep. When I woke up Rick was sitting in the chair looking at me, (I woke up moaning in pain) he had tears in his eyes. He had left the kids in the waiting room while he came in to check on me. He helped me to sit up and get comfortable so that the kids could come in for a minute. The looks on all of their faces said it all, you could tell that they were scared.

We visited for awhile, then I told Rick to go ahead and get the kids out of here. I don't like to make them worry. Rick hung back while the kids took off for the waiting room, he was all teared up again, he said that he hates seeing me this way. I told him that I'm getting better every day, and that everything will be ok. So he gave me a little kiss and left.

The minute they left I passed out, I was still so tired. But an hour later I was moaning in pain all over again, the nurse had to come in with some more pain meds (on top of the pain pump), some meds for nausea.

All in all I'm still hanging in there, I'm sure things will get better soon. We appreciate all of your thoughts and prayers.

Saturday, March 21, 2009

Day +1

Wow... That is all that I can say about last night... I felt well all afternoon, hardly a glitch, then all off the sudden everything hit all at once. Pain, vomiting, diarrhea, it wouldn't stop all night long. The nurse was constantly coming in and out of my room with one medication or another. But nothing helped. Then finally this morning around 7am things started to settle down just in time for a new nurse and my husband to come in. Esta my morning nurse is the bomb she finally got me settled in and Rick had no idea what to think. I looked like shit, I could barely move. I could tell that he was a little scared, just by the look on his face.

Esta got me settled in and gave me a whole barrage of drugs, so that I could get comfortable. Then Rick and I fell asleep. I finally woke him up so that he could go home to the kids. But I'm glad no one else came up to see me today, it was not a pretty sight. When Rick left I started to run a fever, so they had to do more blood cultures and start me on two different kinds of antibiotics.

So basically today has been a bust, and from the sounds of it there are going to be a few more days just like this. I told Rick today that if this transplant does not work, I won't be doing another one, it's just too much.

Please keep our family in your prayers.

Friday, March 20, 2009

Day 0

Sorry it has taken so long to update, there is no computer access for patients unless you can bring a computer from home. My sister Holly brought me her laptop last night so that I can update from time to time.

I was admitted into I.U. Hospital on Friday the 13th, they took me straight down to surgery and had my double lumen placed. After that they sent me up to the Bone Marrow Transplant clinic until they had a room for me, at 6pm. So they finally got me set up, and ran blood work and got me settled in. They started chemo around 8pm, through the next morning. Then they did another round for chemo on Saturday afternoon. Sunday on the other hand was a day of rest so to say no chemo no radiation they just continually pumped me with IV fluids. My first day here I gained 9 pounds from the fluids that they were pumping through me.

Monday I had to start radiation three times a day for 48 minutes each session, that went for Tuesday, Wednesday, and Thursday as well. Then about three days ago they started me on some new medications to suppress my immune system. The first night that I received the chemo cocktail it felt like a bomb exploded inside my body. My head hurt, my body ached, you name it I was feeling it.

So now we are up to day zero... My bone marrow will be here around 9 am, and then they will have to do their thing to the blood before giving it to me. So now I'm looking at transplant time around twelve, or twelve thirty today. They said that today would be pretty non eventful. Shirley from work is up here with me keeping me company until the time comes.

Rick and the kids are all doing pretty well, Rick was able to fix our van last weekend. Thank God, what a nightmare that was.

I'll try to update more after the fact, keep us in your prayers.

Tuesday, March 10, 2009

Quick Update

I know it’s been awhile since I last posted, not a whole lot has been going on lately. Last week the day before I left for Florida the van started making a funny noise so we dropped it off at the shop, and the engine is shot so now we have to replace the whole thing. A friend of ours is letting us borrow her van until we can get ours fixed this weekend. Thank God for her; because the day that I was told that my cancer had relapsed the heads blew in Rick’s car (which we never fixed, because we were just using the van).

Anyways I had a really good time in Florida; I enjoyed spending time with my friend and her family. (Although after the second day I really started missing my family). We did go to a hotel to stay on the beach, but it was so cold, and the wind was blowing so hard that her little girl kept saying, “Ouch, Ouch, Ouch” because the wind was blowing the sand into her little legs. So we stayed for one night because it was warmer where Ange lives. But no joke it was in the 50’s and 60’s until the last day I was there, by then I was sick and didn’t really feel like going to the beach. I wanted to mind you, but I woke up and was so dizzy that I couldn’t even get off of the bed. Every time I got up to walk or sat down the room was spinning. But we did make several trips to the beach and even with my issues I had a really good time. Flying on the other hand was another story… I HATE FLYING!!

I received a call from Jay (BMT Coordinator) while I was in Florida; he stated that the donor hospital never submitted the paperwork for the clinical trial so I was denied for that reason. So now I’m having a mismatched unrelated Bone marrow transplant, and my treatment protocol has changed. So instead of five to seven days of chemo and a couple of days of radiation, I will have two days of chemo, one day of rest, and four days of radiation. The radiation is a treat, because I will have three sessions of radiation a day for 45min – 1hour each session. So I didn’t have to go into the hospital on Monday, I have to go in on Friday the 13th, (Jay said I hope you’re not superstitious) which I’m not, but I don’t think that my husband was happy about it. Then my transplant will take place on Friday the 20th.

Jay wanted me to come in last Friday after my trip, to sign the papers for the transplant, after I got fitted for radiation. The nurse came out and said, “Oh by the way Jay wants me to do a workup on you while you are here.” So she had to stick me two times just to get blood, and she had to hold the needle in a weird position so it was really quite painful, and she had to draw five tubes of blood. When Jay came in I told him about the dizziness, and they looked in my ears and said that I did not have an ear infection, and nothing else is wrong with me, so they think that I have Vertigo (Chemo induced) but almost a week later it hasn’t gotten much better. But they are going to look into the cause more when I get into the hospital.

My sister’s friend is going to loan me her laptop while I’m in the hospital so that when I feel up to it I can post from my room. Hopefully everything will go well over the next few weeks, and months. I really just want to get this over with, and get back to normal as quick as possible.

Wednesday, February 25, 2009

Everything is looking good

I went to all of my appointments this week, and so far so good. Jay just called me to let me know that my bone marrow biopsy results had come in and my cancer is still in remission. So as far as I know all of the dates still stand for next month. Next Thursday when I get back from Florida I have to go back to the hospital and get fitted for radiation, and now I also have to get a spinal tap done for the clinical trial (that we are still not certain that I will be having due to the donors hospital not submitting the paperwork)… Yesterday I was notified that my prescriptions are going to run a minimum of $1,200.00 dollars per month post transplant. I hope my insurance covers most of that??

I had my latest bone marrow biopsy done on the bone marrow transplant floor, and they gave me conscious sedation. I thought that would be really great because my last few that I’ve had done I was not given so much as an Ativan. WRONG… The woman who did the biopsy first off started to do it on my left side (I am already having major problems in my right hip, and I didn’t want the same issues in my left hip) so my husband spoke up and told her that she needed to do the biopsy on the other side. Then she went in for the marrow and piece of bone, and she pulled it out, but then for some reason she went back in, now I was out of it for the most part but I remember this. Rick said it looked like she went all the way through my hip. He yelled out WHAT THE F**&? And everybody stopped what they were doing and looked at him. He asked her what had just happened? And she said, that either she got into the marrow, or the needle slid off of the bone. All I know is I can’t sleep because it hurts so bad. We went out for lunch afterwards and he had to help me out of my seat because I couldn’t stand up, and now I walk with a terrible limp. She will never do my bone marrow biopsy again EVER!! Oh, and by the way she pulled out two slivers of bone on the last attempt, and then threw them away!!!

Completely off of the subject… but why do people feel that it’s completely necessary to let you know that they too knew someone with the same kind of cancer that you have, just to tell you that they died?? That happened yet again to me today, I went for an eye exam and the optometrist asked me what kind of cancer that I had, I told him that I had Leukemia, he said, “Oh, my father had leukemia, what kind do you have?” I told him AML, he said, “That is the same kind that my dad had.” I just looked at him because I knew what was coming next. He said, “My father was much older than you are, I’m sure you’ll do fine with the chemotherapy.” UGGH!!!

I am pretty excited about my trip to Florida, although if I had thought about it for a little bit longer I probably would not be going. I’m going to miss my family, and then turn around and be back in the hospital for at least another month. This is the first trip I have EVER taken in my life by myself. I have to admit it’s a little weird. Ange is taking me down to Key Largo for a couple of days for some R&R, I have to admit I’m really looking forward to that.

Ricky is already getting really clingy, but he will be alright. Rick is starting to have issues with the transplant, we talked today and we are going to sit down before I go into the hospital and discuss all of the What if’s? that is always a tough talk but it’s best to have everything out of the way.

Tuesday, February 17, 2009

Finally some dates to post...

Well I’m just going to give a quick update today. I guess the ball has finally started to roll… I finally got my appointment times set up to make sure that I’m ready for this transplant. I go into the hospital tomorrow morning for a whole battery of tests; Pulmonary Function Test, Chest X-Ray, EKG, Cat Scan, and Lab work, also I have to meet with the BMT Nurse Coordinator. Then on the 23rd I meet with the Dr. Sricastava (do not ask me how to pronounce) she is the doctor that will be heading up my transplant, and I will have yet another Bone Marrow Biopsy that day. Then on the 24th I’m scheduled for a BMT Education Class.

Jay the Nurse Coordinator stated that as of right now they have me scheduled to be admitted into the hospital on March 9th, for 10 days of chemo and radiation. Then on March 19th is my scheduled day for the transplant. All of that depends on the outcome of my tests, and the status of my lung condition, but as of now that’s the plan. He also stated that the clinical trial is not a go just yet, because the donor is not interested in doing it, but they are still trying to talk the person into doing it. I told Rick when I signed the paperwork for the clinical trial if it’s meant to be it will all work out in the end, if not then I’ll take the regular transplant. So I’m not really stressing out about that one.

I spoke with Ange (my best friend who lives in FL) she wanted to come and spend some time with me before my transplant, but my husband told me that if I wanted to go to Florida to visit her that he would pay for my ticket. So we worked it out to where she and I are going to go half and half (since she was planning a trip out here) and I would just visit her. So she has already booked my flight, and I think we are going down to the Keys for a few days as well. I’m leaving on the 28th and will be back March 4th. Then five days later I’ll be checking into I.U. Medical Center. I kind of feel guilty about leaving Rick and the kids for five days especially since I could be in the hospital anywhere from 35 days to three months, but in the same sense I could really use some down time. Just time to relax, get a little sun, and have some fun. Because God knows I won’t be able to go ANYWHERE for a year. I won’t even be able to go grocery shopping (not that I’ll miss that too much)… So that’s it in a nutshell, I’ll update again when I get some test results in.

Tuesday, February 10, 2009

Still Waiting

Not too much has been going on this week still recuperating from chemo, and my most recent hospital stay. I called Jay from the BMT clinic and he stated that they will call me to set up my appointments for my pulmonary function test, my Cat-Scan and other tests. He stated that we were still a few weeks away from the bone marrow transplant.

I think that my appetite has finally returned I’ve gained two pounds a day for the past three days… I’m not even going to stress about it I know that I will lose a ton of weight when I go through the Bone Marrow Transplant.

I received two hospital bills last Saturday that totaled over $132,000.00. My three day stay with the collapsed lung cost me over $25,000.00, and my insurance still hasn’t paid anything on my first hospital stay so I received a nice letter from the hospital stating that if they did not pay anything in the next two weeks that I would be responsible for over $107,000.00 (for a 25 day stay). So now I have to deal with an insurance company (who is no longer my provider). I’m glad that I have nothing better to do than to deal with the insurance company…

I had my final interview with Social Security this week; I was approved for one year Thank God. It will be quite a lot less than I made at my job, but yet still a huge burden lifted. I was afraid that we would end up losing our house.

Now I just have to get Rick familiar with paying all of our bills, because quite honestly I’m not sure how much I’ll be able to do. Just regular Chemo makes it hard to keep up with bills, and household things I can’t imagine how things will be going through a Bone Marrow Transplant.

Rick and the kids like having me home for a change, they get a nice breakfast each morning. Before I was off from work we would sit down to the dinner table Saturday, Sunday, and Monday only, but now they get dinner practically every day. The laundry stays caught up through the week, I like staying at home. I’m going to dread going back to work. (Even though it’s going to be at LEAST a year before that happens).

I will officially be terminated from my job on March 8th and I have to say I’m not that upset about it. I’ve worked at that job for 10 years, and I know more about roaches, rats, mice, millipedes, centipedes, silverfish, termites, and bed bugs than I honestly ever wanted to know… Plus working in a building where they keep all of those pesticides really bothered me especially having AML (which has been linked to pesticides). Oh plus seeing all the people that I’ve worked with over the years fight cancers and brain tumors. We’ve had at least four other people with cancer, and one person with brain tumors. That’s just at a small location, and in my opinion that’s way more that a coincidence. So like I said I’m just not that upset about it. A little nervous about looking for a new job in a year or two and trying to explain why I haven’t worked/my medical issues??? I know that they legally cannot ask me about it, but still it’s going to be there. I’m the type of person who does not have anything to hide if you ask me a direct question; I’ll tell you the truth. I’ve got some time to think about it, so I’m not going to stress about it yet.

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?