Tuesday, December 30, 2008

I'm home...

Well after going back and forth with the home health care and my doctors, (the home health care guy said that they could not get me set up with home health care on Christmas day, maybe not even Christmas weekend) and then my doctor came in Christmas morning and said that I did not have to have I.V. antibiotics that he would just prescribe oral antibiotics. So all of Christmas Eve I was so depressed. I just really wanted to go home. But in the end it all worked out. Rick took the kids to my mothers house, and snuck out to come pick me up. When we got to my mothers house Ricky seen me first and he said, "MOMMY, MOMMY'S here, hey guys mommy's here!" I just wanted to cry…

Being home is great, sometimes I've overdone it a little bit, but Rick is all over that constantly telling me to sit down and rest. He's been really great to me.

I received a packet in the mail from the Bone Marrow Transplant, what to expect etc… I have to say I'm really scared. There are so many risks, and such a huge cost it is so overwhelming, and so many terrible things could happen. I guess that I'm just worried. I'm sure that's normal.

Wednesday, December 24, 2008

Hospital day 24

Guess what I’ll be getting for Christmas??? A ticket home… my counts finally shot up, and the doctor’s just came in and told me and Rick that I’ll get to come home tomorrow. I can honestly say it is so about time.

In general I try to be a pleasant person, but here lately I’ve just been plain old grouchy… I page the nurses station for my meds and no one ever comes to my room. Actually on my way back to my room, I’m going to ask in person and let them know that I can wait!! Like this morning I paged them to let my nurse know that my food was there and I needed my sugar taken, I waited 15 minutes she never came so I just went ahead and ate. (She has still yet to take my sugar.)

I’ll have to go to the bone marrow clinic on Saturday to have my blood counts checked to see if I need a transfusion, and then Monday’s and Thursday’s will be my normal days to come up for transfusions. But I’ll take it.

I can’t wait to sleep in my own bed!!! My back hurts so bad. I don’t know what I’m going to do when I have to spend two months in here????

Tuesday, December 23, 2008

Hospital day 23

Well I was down here this morning and had just started a post when my nurse tracked me down to give me my pre-meds and to tell me to head back to my room for more platelets, which in the end was a good thing, because at 6am I had a really, really bad bloody nose, and by the time I got back to my room the nose bleed started again, and didn’t stop until 11am.

Two days ago they had started me on a clear liquid diet, and I was able to tolerate that well, so today I was put on a liquid diet, the first meal I had some discomfort, but after some rest and then dinner I’ve been able to get it down without pain, and keep it down.

They did a blood gas on my wrist the other day, and now on top of my arm there is swelling and a lot of pain. So they are getting ready to do an ultra-sound to see what the problem is, I can’t even pick up a glass of water with that hand.

After my platelet transfusion this morning I was on the phone with Rick, and three nurses (who have never taken care of me) came right into my room and started looking around, I hung up to phone to see what they wanted, and they said that they have had a lot of patients check out recently and they were the moving crew, there to move me to block A (where they were moving all of the patients). Then they started opening up the closet (where all of my personal effects, and papers are at) they pissed me off. They said oh you don’t have to do anything we’ll move you, “I said oh no you won’t, you can go get me some bags and I will pack my own stuff up.” They were like, are you sure? I said, Yes. So I kicked them all out until I was ready to go. The reason they gave was 1. I was all the way at the end of C block all by myself, and they were going to move everyone close together so that they could help each other out. Yeah right. I’ve had to call over and over for the same things all day, and way more than once my nurse would leave my room to go get something and (NO LIE) would not be back for 2 hours. I’ll be complaining to night shift, and the doctors tomorrow morning. More than once today a whole group of nurses were standing outside my door gossiping in the hallway for half an hour at a time.

Ange and her family made it here ok, she has already been up to see me three times. She took Ricky, Breanna, and her little girl to Chuck E Cheese today for their Christmas gift. They had a blast, they were all asleep before they even hit the interstate. The weather this week has been horrible, icy roads, freezing cold you name it.

My cousins baby Marco had another bone marrow biopsy done to make sure that he is still Leukemia free, and he had some blasts so he has to go through the induction phase again. Although they are going to show Ashley how to administer the chemo and have her give it to him at home??? I’ve never heard of that. She is pretty nervous, but she went to the hospital today and they showed her how to do it, and tomorrow a home health care worker is going to walk her through it again. So she should be alright.

I’ll be here for Christmas, and maybe even New Years, my counts just started coming up yesterday, but that antibiotic regimen that they started me on for the bowel obstruction is a 10 day regimen.

I finally got word from our insurance companies, they agreed to pay for my treatment, and have already pre-approved me for my bone marrow transplant. So a weight has been lifted there.

Thank you for keeping us in your prayers.

Saturday, December 20, 2008

Hospital Day 20

The doctors came in to see me yesterday morning, and I was doing a little better (because I had not eaten anything the day before). So I asked them if I could have something to eat, he said that I could have a clear diet, so the nurse went and got me an orange Jell-O, it took me an hour to get it down, but not two minutes after I had finished eating it I was doubled over in pain, crying the works. So they gave me some extra pain meds, and sent me down for two more x-rays, and another CAT scan.

They had surgery come down to do a consult, I had an obstruction in my bowel, and they were afraid that it would swell, and perforate which in turn would fill my stomach with my bowel contents. So they said that they may need to do surgery… My blood counts were so low that I was afraid to even think about having surgery… Then another surgeon came in and told me that part of my bowels was dying!!! (All of this of course before the final CAT scan was even read).

I looked like total hell… Black circles under my eyes, my face was sunken in. So I finally called Rick and told him all of the things that had been going on so he could be prepared when he came up for a visit later, or in case the decided to go ahead with surgery.

The surgeons kept coming in and saying that they needed to put a tube down my nose to try to open up the blockage, but my oncologist kept telling them that I was Neutropenic and that if I did not have a solid blockage that they were not doing it.

They took me off of food and liquids… the only thing that I could use were a little sponge to wet down my lips, that was it. When they brought those in I thought oh great, Rick and the kids are coming up tonight, and those were the same kind of sponges that they used on Rick mom and grandmother when they were under hospice care. So I hid the package in the drawer, to keep them out of sight.

They have me on 7 cycles of antibiotics a day to try to help clear this up. Anyways Rick and the kids finally came up (I was starting to feel a little bit better in the evening), but when they walked in they all took a step back, Ricky looked scared, Rick started to tear up immediately, Breanna looked scared, and Courtney just had a blank look.

So we went over to sit down and I was dying of thirst, so of course the first thing that I did was ask Courtney to hand me my glass of water, without even thinking about it I pulled the sponge out and wet my lips down, and Rick just started bawling…. He finally pulled himself together when another surgeon (that I had not yet seen) came in and started spouting off all of this stuff about surgery, and me needing a tube put down my nose. In front of my Husband, and KIDS… I looked at her and said, “Could you hang on for a moment, so my Husband can take the kids out into the hallway?” She seemed aggravated, but I wouldn’t let her say another word until they were out of the room. We weren’t going to tell them anything unless it was for certain. Again Rick walks past me crying his eyes out. So she tells me what they want to do, and I told her fine but they would have to come back when my family leaves.

At this point my pain pump had run out of medicine, the nurse was getting ready to change it out when the surgeon cancelled out all of my pain meds. I told him no, if they cancel my pain meds then I quit. (My husband, and kids, and even the nurse got a kick out of that one, but I was serious.) So the nurse called the oncologist back down, and told her what the surgeon had said and done. And she said NO, they are not putting a tube down your nose for a partial blockage when you are Neutropenic, and I’ll re-write your pain meds.

So when Rick and the kids were getting ready to leave, Ricky clung to me a little longer, and he whimpered a little bit, then he said mommy when I come to see you this weekend you’ll wear some make-up right? (He’s six). Breanna, and Courtney gave me hugs and kisses goodbye. Then Rick gave me a kiss, and started to cry, I whispered to him to try to keep it together for the kids. So they were out the door, and he came back into the room and kissed me again and started sobbing… I know this is really hard on him, and yesterday I looked like death warmed over… I told him that I would be ok, and that he can do this.

Around midnight my pain and discomfort started going way down, the surgeons came in this morning and said that 80% of these cases clears up on their own… (Gee do you think they could have thrown that little bit of information in yesterday?) They still have me on no foods, and just tiny sips of water, they are going to try to start me on a clear diet tomorrow. My best friend and her family are coming up for a visit from Florida today, until next week, I was hoping to be home for her visit, but I’ll take what I can get…

Friday, December 19, 2008

Hospital day 19...

I’ve had a rough couple of days… On Tuesday afternoon my stomach started to hurt (really bad) so they sent me down for some x-rays, and ran some blood cultures, they thought it may have been my pancreas but those results came back ok. After Breakfast on Wednesday morning I was in excruciating pain, I couldn’t lie down, I couldn’t sit up, they were still running some test but everything was coming back negative. By Wednesday night they came in to give me two units of morphine, and some oxycodone. Then 20 minutes later they gave me 2 more units of morphine. It would cover the pain for about two hours and they were giving me more morphine and oxycodone. It got to the point where they were monitoring me, because they were afraid that I would stop breathing.

Finally they put me on something stronger than morphine, (I can barely pronounce it little lone spell it.) But it finally got the pain down far enough to where I could sleep for a couple of hours. The doctor’s came in to see me yesterday morning, and decided that they were going to send me down for a cat scan. (I ate nothing yesterday, it was just too painful) The results from the CAT scan showed an obstruction in my small intestine. But of course it had just started to show the obstruction and that was where the CAT scan cut off at?? So I had to drink that nasty stuff again, and have another CAT scan. As of yet the results had not come back in yet. They told me if I do have an obstruction that I will not be allowed to eat or drink anything until they get it fixed… I made it 17 days without any real problems; I guess it was time to throw something exciting in the mix. I woke up this morning and my stomach was so swelled that I looked six months pregnant.

Rick and the kids were supposed to come up for a visit last night, but I told him to wait until tonight because 1. I just wasn’t up to it. And 2. I didn’t want the kids to see me in that shape.

A lady from the American Cancer Society came by yesterday and reshaved my head, I was shedding all over the place; she also gave me a wig and styled it for me. I’m not too sure about the wig. But I have it in case I want to use it.

Well I’m going to close up for now; I’m really tired it took everything that I had to walk down here in the first place.

Tuesday, December 16, 2008

Hospital Day 16 (Good News)

Good News; yesterday I finally got another bone marrow biopsy (although they couldn’t get any bone chipped off and they had to do it FIVE times) to get it done, NO LIE… One of the doctor’s came in about midnight to let me know that as of right now I am Leukemia free in my marrow. Which means I will not have to take a second round of Chemo before leaving the hospital; once all of my blood counts are back up, and the fever stays away I should be allowed to go home for a few weeks. To top that off, I in no way feel as sick as I did when I had cancer and treatment before.

I just wanted to say to everyone who reads, and comments to my blog… I really really appreciate each and everyone of you. Just a few comments sometimes, even from perfect strangers it just gives you that little push that you are so desperately looking for. So I sincerely wanted to thank each and every one of you from the bottom of my heart.

My mother and step-father are still helping out with the kids while Rick works, so that has been a huge help. People from work have sent some nice cards up, even co-workers that I only speak to on the phone from Memphis has sent the most heart felt cards. When you are in the hospital for over two weeks every little bit helps.

My cousin brought me some yarn up and I finished a baby blanket in two days… Need I say more?? Actually I’ve started a second one as well. I’ve read six books, and I’m currently reading the New Testament. So I’m trying to keep myself busy while I’m up here.

I have a touch of insomnia currently, hence the post at 2:30 am. But all in all I’m just really looking forward to going back home to be with my family. I have my Social Security interview at 9am this morning, so please keep us in your prayers for that. I’ll be off of work for over a year for this treatment, and I only have short term disability.

Sunday, December 14, 2008

Hospital Day 14

I’m just going to post a quick update. Not a whole lot has been going on here… Rick was able to spend the night with me last night, but I felt so poorly that I was out by 9:30pm. Although we were both able to get up around 5am, and spend a few hours together.

Reminder to self: Do not ever eat breakfast during a shift change… it takes two hours to get your insulin injection… which leads to a major headache!!

The doctors are going to try to start taking me off of the steroids, so I can in turn be taken off of the insulin. We will see, but I don’t think that I’m having issues with nausea right now. But again we will see.

I’m due for my Bone Marrow Biopsy tomorrow morning, and I still have to get all of my medical records together so that my mother can drop everything off at the Social Security office by tomorrow afternoon. So I still have a lot of things to get together for my interview on Tuesday morning. I should only have to be on Social Security for 1-2 years hopefully if all goes well.

The doctors think that I may be able to be home in time for Christmas, but there is still no word on if a Bone Marrow Donor has yet to be found for me. S-T-R-E-S-S-F-U-L!!

Well my sister Holly is due to visit today, as well as my cousin Jennifer, and my husband and kids. My mother is due to be up here tomorrow. So I’ve got a full docket for a change…

Please continue to keep us in your prayers… We really need them.

Saturday, December 13, 2008

Hospital day 13

Well good news and bad news, they did not do the bone marrow biopsy yesterday, but I have it too look forward to on Monday… Which is fine by me, because I was really dreading it...

Rick’s cousin took our two youngest for the weekend, so Rick will be staying up here with me tonight. So I’ll finally have some company….

They put me on a steroid combination which has made my blood sugar spike, so now I’m taking insulin injections. My Red Blood Cell count is 7 so I’m set to receive two units of blood this morning. I’ve also got blisters going down my throat, they are currently giving me some medications for this, but it is still hard to swallow even water… But all in all I still feel pretty good even with the few complications that have come up.

My cousin Jennifer brought me some yarn up the other day, and I’ve already finished what she brought me, so Rick is bringing me some more up tonight so I can finish this blanket that I just started yesterday (and am halfway done!!) Can you tell I have absolutely nothing to do up here?

My best friend and her family are due to visit the week of Christmas; hopefully I’ll be out of the hospital for that week.

Well I’d better head back to my room, I’m sure my blood is ready for me…

Friday, December 12, 2008

Bone Marrow Biopsy Day!!

Its six o’clock in the morning, I’m down at the family center I thought that I got up here early enough to hit the washer/dryer first but someone beat me down here. (I’ve been here since 5:30, and I hate to move other people’s laundry but their load is finished washing!!) Oh well I guess I can wait until later. Rick and the kids came up for a visit last night it was short but sweet. The kids spent the night at my mom’s house for a change. Grandpa wanted to spend the night in his own bed for a change.

We finally got in touch with some of Rick’s friends that have been stationed in Germany for several years, now they just live a few states over so hopefully after my treatment we will be up for a quick visit. Rick was really excited to hear from them.

I am set for a bone marrow biopsy this morning, so please keep me in your thoughts and prayers. For one it hurts like mad, and two, it will determine if the chemo has put me into remission, or if I’m up for another round of chemo prior to the bone marrow transplant. I still haven’t heard from the bone marrow transplant team to see if they have worked out my insurance issues as of yet, it is so stressful waiting and worrying about this. But I know everything will work out. I’m currently getting everything together for my Social Security interview, it’s hard to get all of the paperwork that I need from home by trying to direct Rick as to where everything is at.

Well I guess that’s it for now, I’ll update later this afternoon after the results are in.

By the way thank you all for your wonderful support.

Thursday, December 11, 2008

Day 11 in the hospital

My blood counts yesterday were:
WB: 0.5
RB: 7.1
Platelets: 10

So that earned me one bag of platelets, and two units of blood. So I feel much better today than I have in awhile. I still run out of breath quite easily, but all in all I’m doing fine.

Rick is bringing the kids up to see me tonight; I’m pretty excited about that. It gets real lonely up here.

They have me scheduled for a bone marrow biopsy tomorrow morning, I just got over the pain and discomfort from the one in November. So I’m not looking forward to this one.

My nurse (Katie) came to see me yesterday and notified me that my sister was not a match. So they are going to put me on the bone marrow registry list to look for a possible match. The longer this goes on the more nervous I get. I’m really not looking forward to this at all.

Just a side note two people that I have been following recently have both passed this week, please stop by their blogs to offer support to their friends and families. The first one is Derrick Dull his blog address: http://djdully.blogspot.com/ , and the next one is Erica Murray her blog address: http://ericamurray.blogspot.com/ . I’m sure their families would really appreciate your words of support.

Wednesday, December 10, 2008

Another update

The swelling finally went away, but now the treatment is finally catching up to me. Loss of appetite, and not being able to keep down what I do eat. I guess after 7 days of chemo 24 hours a day, it’s bound to knock anyone off their feet. The doctors are currently working on getting the nausea under control.

I’ve had a few more visitors the past few days, so that’s been nice (although last night it took me a good half hour to wake up when my cousin and her husband came up to visit). The kids are handling things really well; Rick is going to bring them up to see me Thursday night.

My blood counts are falling nicely; I’m probably looking at a Platelet transfusion tomorrow and a blood transfusion by Friday. It makes me so tired, and my head hurts a lot. They give me oxycodone for my headaches, I’d much rather take Tylenol than a narcotic. But what can you say??

Sorry I don’t have more to talk about, but it’s pretty boring here. So there is not much to report.

Saturday, December 06, 2008

Quick update...

I’m still doing well; I’m currently a little swollen from all of the I.V. fluids, but I just spoke with my doctor and they are getting ready to cut the fluids way down.

My sister Rachel came down yesterday and had her blood drawn to see if she will be a possible match for my bone marrow transplant. I still have to contact my insurance company on Monday morning (Rick finally found the paperwork showing that we have been covered) so hopefully that will all work out.

I spoke with someone from my benefits department at work yesterday, and they have approved my leave for eight weeks, anything after that they will need updated medical records. It’s a good thing that I have nothing better to do than to remember when my benefits will expire, and to keep them updated!!!

I’ve had just a few visitors so far, but hopefully I’ll have a few extras on the weekend. It gets really boring up here. I’ve been here since Monday night, and I really don’t leave my room too often. So you kind of go stir crazy.

I’ll be honest I’m having a hard time dealing with this reoccurrence. I’m encouraged so far because treatment is going well with very little side effects. But on the other hand I’ve looked up Bone Marrow Transplants and I know the risks, I’ve not shared them with my family, but it’s really scary. I know that I’m still young and relatively healthy, but anything could happen. I guess until that time comes I really shouldn’t worry about it, but that is easier said than done.

Rick brought the kids up the night before last, it was really good to be able too see them and give them kisses. I really miss them a lot.

Wednesday, December 03, 2008

Post from the Hospital

I was admitted on Monday but due to lack of beds it was at 6:30 pm instead of my scheduled 11am check in. At least I had that much more time to spend with my family. We decided to let the kids open their Christmas presents on Sunday night since I'm scheduled to be in the hospital until after the New Year. So they were pretty excited about that.

Yesterday morning around 7 am they took me down to have a triple lumen placed in my neck. Problem was all of the doctors were in a staff meeting, and I ended up lying on a surgery table for over two hours until the nurses could locate a doctor. When he tried to get the catheter into my neck the vein was too small. So he had to shove a spacer down the vein first to stretch it out wide enough to get the catheter into the vein. I finally got back to my room around 10:30 and I went to tie the back of my gown when I realized that it was soaked in blood. Do you think they might have noticed?? Of course my nurse walked in at the right time and I asked her for a new gown.

Then once I got settled and she came in to introduce herself; without trying to be mean, I let her know what I was, and was not going to do. She was trying to give me 5-8 pills and I made her name off everything, and what it was for. Then I let her know that I did not want any anti-psychotic medication (last time I was treated, I lost 3 weeks because they had me zonked out on meds). She probably thought I was a you-know-what, but I was irritated and I really didn’t care. Dr. Cripe’s nurse came in to see me later and I also let her know about the meds and she said that she would update my file.

They started my chemo at noon yesterday, so far so good. I was a little nauseous last night but they gave me some meds for that, and I never even got sick yesterday. Which is a big change from last time; I’m still able to function, I’m reading, filling out Christmas cards, watching T.V. and fielding phone calls from Courtney’s school letting me know that she was just suspended from school for fighting… The dean told me that if school security was on campus today she and the other girl would be on their way to girls school right now. But as it stands for now, she has a five day suspension, and if she has any other altercations this year it will lead to a more lengthy suspension or even expulsion. So I can’t even imagine how this conversation will go over with Rick later, but I’m sure it won’t be good.

Marco is scheduled to go home from the hospital next week, from what my mother tells me he is doing better.

They came in to talk to me about a bone marrow transplant, and then right after that admitting came in to tell me that my insurance was refusing because this was a pre-existing condition. So I had to call Rick and he is going through our paperwork at home to show that our insurance never lapsed. His last day was a Saturday, and that next Monday I picked up my insurance, and after 30 days with his new company he also picked up insurance. So I’m sure that I’ll be covered, but we just have to locate that paperwork. If I was at home I could have it found in five minutes, but it’s hard to relay where you think it might be to someone else… Insurance is very frustrating…

I went and had my head shaved on Friday, and later Saturday evening Ricky asked me why I was wearing a girls pirate hat?? Kid’s are cute. (He also told me that I looked like a boy)

On Sunday I was making breakfast and Breanna told me that when she grows up and has her own family, that she wants me to come over every Sunday morning to make breakfast for them, because I make the best breakfast in the world… That is if I’m still alive when she is older. (ouch!! A knife in the heart) I know that they don’t understand, but then again they kind of do.

Well I’ll update more, when I’m able too. Keep me, and my family in your prayers.