Monday, July 27, 2009

Second Week

Well I am starting my second week at home, still resting and trying to build my strength back. It sure is good to be at home for this time, it makes me dread going back to Little Rock though. Some people take a three week break, I think if I were home for three weeks I sure enough wouldn't want to go back, I think I would have to say no thank you, I'm good. But I know I couldn't do that, we are in for the long haul. We want to put this cancer totally in remission, not to be faced with it again. I haven't received my new schedule yet, the plan is to have a pet scan probably on Tuesday of next week and move on from there. I go for blood work today, to make sure all my counts are still doing ok.

I want to say Thank You to all of you for your prayers, cards, calls, visits and words of encourgement during my illness. Please continue to pray for my strength and healing.

Thursday, July 23, 2009

Home Sweet Home

After getting home on Saturday, I have just had alot of rest and recovery time. I am really weak and tired right now, my counts are not back to where they should be yet so I don't have alot of energy right now, I get pretty tired just walking across the room. I need to get my energy and strength back so I can do this treatment all over again. I will have to take the same treatment over again except for the growth factor shots. I have to go to Highland Oncology twice a week to have blood drawn, they keep a eye on my counts to see if I need anything while I am at home. They are authorized to give me fluids, blood or anything else that I might neeed while I am home. My goal is to get rid of this upper crud that I have had, while I am home and to just get to feeling more like myself. I had blood work done today and I had an eye appointment, my eyes have really dried out due to the chemo and all the other medication I have been taking. I got some eye drops/liquid tears to use when my eyes are so dry. My eye dr. suggested when things were so bad just wear my glasses and not try to wear my contacs. While in town we had some extra time between appointments, my sister ran me by my workplace. Besides talking or texting I have not seen my work family for a few weeks, it was really good to see my family there and to visit a short while. They have been so good to me through all of this, while I have been at Little Rock and at home as well. I work with a great bunch of folks. Well off to get some rest.
Please pray for strength and healing while I am home and for tolerance to the next round of chemo and overall treatment, round #2.

Sunday, July 12, 2009

Another new adventure

Sunday morning my platelet count was back to where it needed to be, but now I am low on blood. They gave me a unit of blood this morning, along with fluids and antibiotic.

Monday morning, much of the same, low on blood again. I received another unit of blood.

My cough seems to continue to get worse everyday, they are still treating me with cough syrup, breathing treatment and an enhaler. My counts are moving in the right direction, as I have probably mentioned before, your counts have to pretty much bottom out before you are ready to harvest your stem cell.

Andrew left on Wednesday, Jeremy came to stay with me until Clay arrived on Thursday. The timing was just right, we received a notice that we would start harvesting first thing Thursday morning. Before this could happen some other things neeeded to take place, a new larger line needed to be put in, so it could harvest, the line that I have had in for several weeks just wouldn't be large enough for the harvest.

We started out Thursday morning with blood work and scheduled a time to get my line switched out. After that we were ready to get started with the harvest, this a non painful process. Things went very well with Thursday's harvest, when we got there Friday they explained to us that I had harvested 30 million stem cell, they asked us how excited we were about the numbers. As we learn more, I guess we should to be very excited about the numbers. I was only hooked up to the machine about an hour and a half on Thursday to get this 30 million. The goal is to get 20 million over a 4 day period if needed. Just for the protocol they hooked me up about 30 minutes on Friday, we didn't ever hear the numbers for this short time. I will have enough to do the double transplant, then if I have problems in years or months to come I will have enough stem cell frozen that we won't have to harvest again.

At this point the harvest was over, we were scheduled to see the Dr. in the afternoon and things moved quickly from there. We were told we could take a break from all the treatment, rest up, recover from all the chemo and just take it easy for a couple of weeks. We met with the nurse to get all my home medications lined up, get all my instrutions and schedule my line to be taken out for while I am at home. All these things fell into place late Friday afternoon, it was nice to get my line out, it had been a part of me for quite a while. I am pretty limited on what I can do, stooping, bending, lifting due to the line being in the vein in my neck. You just have to watch for bleeding and such for a few hours after it has been taken out. I am glad this was late in the day so we could keep an eye on it before we heading back to NWA.

Clay packed us up and we heading for home on Saturday morning. I wasn't much help in loading the car due to not being able to lift or stoop to pick up things. We arrived home early afternoon on Saturday, it was really good to be home.

Numbers on the downhill

Clay and I went through our process Saturday morning, to also find out my platelet's were low and they would be giving me platelet's through my line. This of course takes alot of extra time, to match, order and every other precaution they have to take before doing this. To my knowledge there were no side effects with me taking these platelet's.

My energy level is just about at zero right now, your counts drop all the way down before they start coming back up. This is just part of the process you go through, to move onto harvesting the stem cell. This could be later next week or the next, at this point it is just keeping a close eye on all my lab work.

Starting sometime midweek my appetite really seem to be changing, I am not very hungry, if I think I am, nothing sounds good. My taste buds have really changed, even water doesn't taste like water, but I still have to pour it down me and I need to try to eat for the energy. Microwave cheese\mac tastes good, I may burn myself out on it but right now it's pretty good. As for the ones that know me, you know that I love my tomatoes, well my mom sent her first tomato down to (as promised) me but I couldn't even taste it. I was so dissappointed, I hope my tastebuds get straightened out before the tomatoes are gone this summer.

Friday, July 10, 2009

Doctor's appointment

Thursday, July 9th was pretty much the same ole same ole. Early morning appointment for fluids, bloodwork and my growth factor shot. Candes and I went to see the doctor today as well, he seem to be pleased with my counts, we are heading in the right direction. My light chains have decreased from the start, so that is a good thing. The protein level in my kidneys also is going down, I am having alot of issues with my blood pressure, being so low they know they have to hydrate me pretty soon after I get there. Some of the meds I have been taking since day 1 seem to be flirting with my liver counts, so they have changed it to something else and also added another med 4 times a day. They watch your counts very close to see if you are too low or to high on something. I was impressed last night, around 7or so I got a call from the Dr. that I had seen a few hours earlier, he called tell me to stop taking this particular pill. They truly spend alot of time researching each and every case. My cough just continue's to hang on as well as my wheezing.
Please pray that I could get over this and be strong when I need to be.

Wednesday, July 8, 2009

Rough Days

Monday, July 6th, we were on to a new chapter of Barbara's journey. Heading to UAMS now twice a day for my growth factor shots, it keeps us on the road alot. The growth factor shot is to stimulate and build my stem cell. This process normally takes a week, I get a shot of the morning and then approx. 6 hours later. They will know through my blood work whether or not it is time to stop taking the growth factor shot. I am still having to take in a bag of fluid, antibiotic and have blood work done daily. Last week after my thyroid biopsy, I started with a sore throat, it continued several days, they were checking my blood work for infection. Well it carried on and on and developed into an earth shaking cough, each day they seem to prescribe something else to try to help. I can't sleep at night for the coughing and wheezing, even with cough syrup with codeine. Now they have added another cough syrup to the plan. They called a respiratory therapist in today to give me a breathing treatment, also put me on an inhaler and sent me home with a little breathing exerciser, to keep my lungs clear so the infection won't set up there. I hope this will do the trick, the cough is really beginning to get to me. As of today I was told I needed to have my mask on, with this cough and being around other patients. I can't say that I blame them, I would expect the same respect for me. My potassium has been way off as well, the first day this happened they sent me home with what they call a baby bottle, this can be sent home with something you need, like antibiotic or potassium. This is just hooked to my line I already have in. Like I said the first day I needed one baby bottle, it takes about 6 hours to feed through. I thought I would be done with that but the next day I was alot lower so I was sent home with 3 baby bottles to switch out that afternoon, night and the next morning. Andrew got to share this experience with me. My potassium is back up so I hope it will stay there. Well it is time to do my breathing and get to bed, so we can do it all over again tomorrow. I do see the doctor tomorrow, Dr. B. is out, I will be seeing one of his partners.

Sunday, July 5, 2009

A little lighter

Friday, July 3rd was the third day to be hooked up to my 24 hour a day chemo take along bag. At this point it is getting very old, you can't get 2 feet away from it or it will reel you back in. I look forward to Clay coming today, Candes will head back home to her family for a few days.

Jeremy, Adrienne & Jonah made it in about 10:30 tonight, it was sure good to see them. Jonah had grown so much, it had been about 2 weeks since I had seen him last. Even though I couldn't hold him or kiss on him just seeing him laugh and play made it all worth while.

I have been a little behind on blogging lately, I am still here carrying on with my daily routine. I have had some rough days, please pray for strength and good days to come.

Friday, July 3, 2009

Moving forward

I failed to mention in my last post about the last weekend we got to go home, of course it was Father's Day on Sunday. I was glad we all got to be together with Clay that day, he is that special man in my life. Andrew grilled out and we all had a good visit and several even enjoyed the pool. Jonah (grandson) actually enjoyed the pool for the first time on Saturday, he came back for more fun on Sunday. He and his grandpa enjoyed playing in the pool, I am unable to get in the pool due to the chemo line I have in, there will be next summer. I had mentioned that I worked on Monday and Tuesday, but then Tuesday night the kids all came by and a few friends dropped by. We were packing to head down here for who really knows how long, it was a tearful, very emotional time for me. I am trying to pull myself together but it is a real trying time right now just in the beginning of treatment.

Now actually moving on, I feel we are moving forward torward positive things now, after all the testing and prelimanary findings we are moving forward. It has been a busy week here at UAMS for us. Soon after the thyroid biopsy I developed a really sore throat, lost my voice and started with a cough. They thought it might have something to do with the biopsy since I wasn't running any fever. So they set me up to see an ENT so he could swab and scope my nose and throat. I guess it must be Little Rock allergies. I am still coping with it but it seems to be getting somewhat better. I continue to go in everyday for fluids for my kidneys, and now I am taking antibiotic through my line everyday.

As of Wednesday I have been hooked up to a bag of chemo 24 hours a day, I carry it everywhere I go, yes, everywhere. I will have this with me until Sunday morning then I will get to be unhooked for sometime. I have started also started getting blood thinners shots each day as well taking a vast number of pills. I started taking steroids this week and today I look like a blimp, not a good feeling or a pretty site. They say the swelling will go down fairly soon, I am ready , I don't like the puffy look. I have really been tired today, hope to get a good nights rest to get up and do it all over again. One bright note Jeremy, Adrienne & Jonah are coming to see us to celebrate the 4th in a different style this year. I don't know how much fun I will be but I do look forward to seeing them. Thank you for your continued thoughts and prayers.