I have been on the meds almost two full days now, I am still having alot of pain but I think it is getting less. There have been things that I have done today that haven't been as painful as they were yesterday. I feel like this is a good sign. The swelling is still there and the redness but I feel like we are on the right track, I didn't report in today since I felt there was a little improvement. I go in for blood work again on Monday, so if I don't feel alot better then I will talk to the oncologist. My prayer is that it will be much, much better by Monday, I want to enjoy next week without leg pain.
I have had a great today, it was a beautiful day and I actually set out on the back porch all day long, just in and out for whatever. It was so peaceful, I haven't gotten to do that in a long time.
I guess I thought being home, doing some walking and taking my shots the clots would disappear, but they haven't, they only got worse. Yesterday was a miserable day, my leg hurt so bad, it hurt to set, stand, walk. It just doesn't seem to be improving, I had an appointment at Highland Oncology this morning, I thought I would talk to them about the clots. Dr Travis was in today, I felt good about this since he came from UAMS Myeloma Insitute a few years ago. He put me back on steroids and another drug as well, I still take my blood thinner shot as well. I hope by tomorrow things will be improving. Besides my leg I feel pretty good, I just want my leg to get better so I can enjoy my second week at home.
Only two things standing in my way right now, before getting in the car to head home.
1) Removing the line from my jugular vein
2) Getting the Doppler Ultrasound on my left leg
Waiting with phone in hand this morning for a call from the scheduling nurse, to let me know what time to go in to have the Doppler done and my line taken out.
Our plan was to have these things done early (which was mentioned to us yesterday) this morning and be on the road by noon. Well when I did get the call it wasn't what I wanted to hear. I was told to come on in to get my line taken out, but they would have to work me in. When we checked in we saw the waiting room was packed so we were sure that this wasn't a good sign, but I probably didn't set there 10 minutes and my buzzer went off. So this was a good thing. The other thing the scheduling nurse told me, they couldn't get me in until 2 for the Doppler, not what we wanted to hear. After they pulled my line (and I do mean pulled) Andrew and I grabbed a sandwich at the hospital and headed on down to the vascular lab, we thought they might try to get me in a little sooner. First they told us that there were no other openings so it would be 2. But it was just a little before 1 they called me back, I was very grateful. I was in alot of pain, I knew something was wrong I just didn't know what. The pain was in my left inside calf area but had also moved up into my upper thigh as the day has done on. I was getting to feel a little worry and concern. The results were that I did have 2 blood clots, the are superficial, they say that is the better ones to have unlike the deep ones. But I am here to say they are very painful, it hurts to walk, stand, set and lay, so there is not a real good position to be in. The plan is to use blood thinners for a week and do some walking(which I said is very painful but I have to force myself)and hopefully this will take care of it. I got the first shot before we left, Andrew got instructions on how to give the shots, he will be giving them to me for the next 6 days. Yes, back to the shots in the stomach. We finally got out of there and went to the apartment to load the car, of course Andrew had to do all the loading since I can't lift, squat, bend over or about anything else due to my line being taken out just a little early. We don't want any unnecessary bleeding to start. We were on the road for home, we stopped to let me walk around alittle on the way, we pulled in the driveway right about 8pm. It is sure good to be home, I will be home for almost 2 weeks.
Our trip to the infusion center was fast and painless today, just blood work, no fluids. So in and out. Now with time to kill before my 4:00 Dr. appointment we headed back to the apartment. At my appointment we had to talk to the nurse, Physicians Assistant, research nurse and one more nurse before we actually saw the dr. There is alot involved at a discharge appointment, you have to get your instructions for home and go over your medications.
Dr. B. released me to go home for two weeks to build my strength, before coming back to get ready for my transplant.
There was only one little set back today, I have mentioned before that I had a problem with my leg wanting to make a blood clot. It didn't ever happen last time but today of all days it is trying again, it is very red and holding heat. They felt like to be safe we better have a doppler ultrasound ran on my leg. Hopefully it won't show up anything but we can't take a chance before heading home. I will also get my line taken out tomorrow, it will be so nice to have that out, even if it is just for 2 weeks. So we wait to see what tomorrow will bring. I am just ready to head home for while.
Much of today was the same as every other day, with a couple of fun things thrown in to boot. On the way to the infusion center Clay and I stopped at "The Academy" shoe and much more store. We hadn't ever been there and I wanted to look for some tennis shoes, it is a huge store. I pretty much stayed in the T-shoe section since that was what I was looking for, yes I found a pair. Then we headed on to the infusion center, I needed potassium today, so I came home with an infuser that Andrew unhooked at 8 tonight. All other counts were good. As I mentioned a day or so ago my eyes are the issue right now, they are driving me crazy. They are still so itchy and irritated, I talked to the nurse about it today she mentioned it was probably due to my eyelashes falling out. I had decided that maybe they wouldn't fall out this time, due to the length of time between loosing my hair and now. I have always been fond of my eyelashes so I hate to face the fact that they will slowly be disappearing. They put me on Benadryl for the itching and suggested holding cold packs on my eyes. Hopefully this will help, having to wear my glasses means no sun glasses and the sun makes my eyes so sensitive, my eyes water all the time now anyway. The other fun thing was I rode in the golf cart with Andrew while he played 9 holes of golf. It got me out of the apartment and it had cooled off enough that the fresh air was good for me.
Today we got up, ate breakfast and decided we would go to the Farmers Market in Bryant. It is a fairly new market to the area so we didn't know what to expect. On the other hand I think I was expecting more like our Farmers Market in Fayetteville. I was a little disappointed but oh well it was an outing. We came back to the apartment to eat lunch and headed to the infusion center, today was probably the shortest time ever spent there. I had to get fluids and have blood drawn, my WBC had gone down just a tiny bit, it was 4.3. They say it could do this, as it is coming up, go back and forth a little. So another good day, Clay is going to cook out and we are just going to stay home tonight.
Things started looking better today, I started out this morning feeling pretty good for change. Today was the first day I could actually go anywhere, I felt like I had been let out of prison, Clay and I decided to go to Cracker Barrel to eat breakfast. When you are down here taking treatments you loose all track of time, you don't know what day it is little on the date. It honestly seems like I have been here at least a year. But I know better. Today was another good day with counts, my WBC was up to 4.61 and my RBC is now at 9.8, I did get blood today but hopefully that will be all I need. I am just excited about feeling better for a change, just hope it continues. My throat is still getting better but not well, new symptoms that started late yesterday: fever blisters and dry itching eyes. My eyes did this last round, my eye dr. said it was due to all the steroids I had taken. It will probably last close to a week. It is very irritating, and so hard to keep your hands off your eyes, I am not able to wear my contacs right now and I hate that. Saturday, Sunday and Monday we will do blood work and maybe fluids, then I we see the dr. late Monday afternoon hopefully to plan a trip up North.
Woo Hoo!!!!!! Things are finally going my way. It was a really long day, Clay got here before 12 and Candes headed for home. Clay and I went to the infusion center for our 12:30 appointment, when all was said and done we walked out the door at 6 pm. I received a bag a fluid and we found out my white blood count had jumped up to 4.26, we were excited about this number. I get to shed the mask, the nurse mentioned to still use good judgement about being around people with colds or any type of a bug. We thought all was going to be good since my WBC was up, but then they told me I needed to get more blood today and then again tomorrow, We haven't really figured out where all this blood is going. What took so long today was the blood bank was so backed up, by the time they run all the blood and crossmatch it to the recipient alot of time goes by. Always a hurry up and wait game. But it is already for tomorrow so we shouldn't have quite the wait. I was a little low on potassium today, but we are going to check it tomorrow, it wasn't low enough to be too concerned today. The nurse just gave us a list of foods that were high in potassium, this should at least hold me until tomorrow so we can check it then. My throat may be a little better today, it is still sore but I think I can tell a difference today. I continue to do everything I am suppose to do. I didn't mention it yesterday but I started having bone pain, mainly in the low back area. It was like throbbing pain in the area where they took a little piece of bone out during my bone marrow biopsy. It is funny, the things that you think are painful, they take it as a good thing. You are suppose to have bone pain this time because it shows your WBC is coming back up. We hope for another good day tomorrow, just not as long and more good numbers.
There is hope!!!! My white count came all the way up to 1.47 today (not really high, but for me it is) so tomorrow we are hoping for even higher. The APN said it should be up more tomorrow and I should start feeling better. I am looking forward to my counts being up so I will have some energy and feel better. My throat is still really sore, the APN also added that as my counts come up my throat should begin to feel better. I pray for that. I knew that I wasn't hydrated enough this morning because it has been almost impossible to drink anything, you would think cold would feel good on a sore throat but it burns. I had to take two bags of fluid today instead of one. Candes made us some warm tea this morning, it seem to soothe my throat a little. It seems like luke warm is the answer right now. She is also fixing her famous fried rice for us tonight for dinner, it always seems to hit the spot. It is always so good to have her here with me. I will always be her baby sister. Thank you Candes, I love you.
Another busy day, we were off to the infusion center at 10 knowing my Dr.'s appointment was at 12:30. They still seem a little concerned with my blood pressure, they just can't get it to come up to stay any length of time, by the next day it is back down. Clay has offered to share with me, if they can figure out how to do that. My white count did come up just a little today but not enough to help a whole lot, I am still so tired, it was o.26. My sore throat has gotten worse, the magic mouth wash I got yesterday wasn't an overnight miracle anyway. They prescribed another pill today, you dissolve it in 5cc of water, it is total chalk I am sure of it, it makes you want to throw up. I did have to get fluids today and a growth factor shot all due to my BP, thought we were home free and they decided that I needed platelet's as well. So by the time I did all this I was running late for my dr. appointment, as if I haven't waited on him before.
Dr. B. felt like everything concerning treatment had gone as planned, he felt like we were right on target as far as the transplant. With my low counts and this throat thing, I will be down here at least another week getting better, my counts will have to be back in a certain range and my throat will have to feel better. I will see the Dr. again next Monday and the decision will be made of what we will do. If I do get to come home, we can make the decision of how long I will be home for. I for one do not want to drag this out any longer than needed, it will probably be like a two week. If I went home for four weeks I promise you I would not want to come back. I just want to stay on target as long as I am feeling up to it, to get the transplant so I will feel better.
Candes made potato soup tonight, it felt a little soothing on my throat.
Tomorrow we will head back to the infusion center for basically the same things that we have done for the past week. Our goal is getting my white blood count back up and to regulate my BP.
My numbers are still off today, my throat is still sore and there could be a sign of infection. We mentioned my sore throat to my APN, she noticed some red mucus in the back of my throat. She prescribed another mouthwash that is for mucus membranes, so hopefully this will give some relief. My red blood count is at 3.02 today and my white count is at 0.10. My CRP went up again today, it is 24.20, we should hear from the culture's by tomorrow. We need to anyway, that is when we see the Dr. and he will want that report. I took another bag of fluid today, due to my blood pressure. They also prescribed a pill for me to take once a day to stimulate my adrenal glands, this is suppose to keep my blood pressure more regular and not so low.
Hopefully my Dr.'s appointment goes well tomorrow and a decision will be made about going home for a week, staying here to fight infection, or staying here to get ready for the stem cell transplant.
I forgot to mention yesterday that I got a special treat from my little guy. Jeremy is here with me, and Adrienne called him to set up our web cameras from the computer. It was wonderful to see him. He was just playing, talking & laughing, he is all over the place now. He has grown so much. We also did this again today. Isn't technology wonderful? Thank you Adrienne!!!!
I woke up with a headache today, I hope it doesn't stay with me long since I can't take Tylenol, Advil or Excederin.
Hopefully we are coming to the final days of the low counts, it is getting old not having any energy or strength. My white blood count is still very low, so it is very hard to fight off infection. I started with a sore throat tonight, I hope it doesn't last.
My headache lasted all day long, finally late in the evening it left me. I will have to mention my throat tomorrow when Jeremy and I go in, if it is not any better.
My CRP count seems to be climbing, they want it to go down not up. I have been around 8-10 but today it was 18.80. This is the # they look at for infection. They did a blood culture today, so we should have that back in a few days.
Please continue to pray that I will not have any infection set up in my system, and that my numbers will soon get back to where they need to be.
Today my counts went way down, since I recieved blood yesterday I was still ok there. My platelet count had dropped from 20 to 11, anything under 20 you need platelet's, mine really dropped overnight. So I recieved a bag of fluids (again pretty much due to blood pressure & heart rate) and a very large bag of platlet's today. I am feeling pretty good, just kinda yucky and tired, I took a pretty good nap this afternoon when Clay and I got home from the infusion center. Clay is going to grill out some chicken tonight, we will have that and a baked potato and that will be dinner. This eating thing is hard to figure, I think I will be hungry but then it fills me up so fast. This is one of my favorite meals normally, these days you just don't know, everything has a taste of it's own. Jeremy is going to come down tomorrow to take a shift, he will be here a couple of days. We were hoping Adrienne and Jonah were going to get to come with him but we found out yesterday that I am not suppose to be around little ones. Actually I am not suppose to be around anyone while my counts are so low. We were hoping they would go back up by tomorrow but they said it would probably be Tuesday before the counts went back up. So I am missing a chance to see Adrienne and Jonah this time, but we have to do what they say. They say that even a healthy baby can carry or hold something in that we don't even know about, they say they are like elephants as far as carriers. (Sorry Jonah) I will miss seeing them but I guess I just better not take a chance and do what they say. I will just look forward to seeing them more next time or when I am home and right now we are not sure when that will be.
Again a Big Thank You for all the prayers, cards, calls, packages, & messages while I have been here in Little Rock, it is good to hear from each and everyone of you.
The counts are still going down today, it was a very long day. Candes and I got there for my 10 am appointment a few minutes before 10, but set in the waiting room with several other patients for quite some time before they called us back. Even then we were there forever, Clay got there while we were still in the waiting room, Candes and I said our goodbyes and she heading toward Fayetteville. My counts were really low, blood pressure a little low and again my heart rate was a little high. I was given a bag of fluids and 2 units of blood, I may need platelet's tomorrow if I drop anymore. I am just really tired and sleepy today, I guess anyone would be tired setting all day, I was just extra tired. As far as my sleep, I had mentioned not being able to sleep at night, they had me to take a different pill and it is helping. I rested better last night and the night before than I had in several nights.
Well as we figured I am on the down side, I went in with my mask on today just in case and sure enough I was neutropenic, meaning my white blood counts have hit bottom. My blood pressure was a little low and my heart rate was high today. I took in one bag of fluids, growth factor shot and was sent home with a baby bottle infuser of antibotic, just in case my fever spikes overnight. Hopefully this doesn't happen because I do not want any infection to set in right now. With my counts being so low they already told me that I would be getting blood tomorrow and I'm not sure what else. I am feeling ok just a little draggy, at this point I have to be extremely careful in everything I do, everything I touch and do major handwashing. My caregivers need to also be very careful with what they handle for me and with food handling. It is time to limit some of the things I might eat, NO grapes, NO melon, NO strawberries, NO fruits with skin. They say there is just NO way you can get these things clean enough and they just aren't safe for me to eat during this time.
Please pray for no fever, no infection and that my counts jump back to where they need to be as soon as possible, and I will feel more like myself.
Thank you all for continued love, prayers & support for me while I am taking treatments here in Little Rock.
Things were a little better today than yesterday, my blood pressure was better today but my heart rate was up, so again I had to take fluids. They changed my dressing today, I think it looked a little better today than yesterday, it feels a little better too. With keeping the ointment on the skin hopefully it will heal faster. Candes and I ran to the store this afternoon to pick up a few things that we needed. We thought we should get out today since starting tomorrow I probably shouldn't be around people without my mask on, so that pretty much means the hospital and back home. My counts will be down for a few days before they start going back up. I am still taking the anti nausea pills as a prevention, you can still get sick even days after you go off the bag, I still don't want that. I haven't been sleeping much at all at night, I don't know what the problem is, I can't go to sleep or then when I go to sleep I can't stay asleep. They are having me to take a different pill tonight so we will see what happens. I need the rest, my body is tired.
Please pray for my strength and pray that I can stay away from any viruses or bugs while my counts are down.
I was a little weak this morning, out of breath and just overall not really myself. When we got to the infusion center we understood why, my blood pressure was 50/30 something. Definitely a red light!!!!!! I needed fluids in a bad way, one bag maybe two. After I received one bag of fluids my blood pressure went back to normal for me, so only one bag of fluids did I receive. They decided to change my line dressing today (a day early) the nurse thought it looked like it needed to be changed. When they were changing the bandage they noticed how irritated my skin had gotten in a weeks time, they decided they needed to go with a different type of dressing this time. My skin was so red and irritated as they pulled the bandage and tape off part of my skin pulled off, they will keep ointment on my neck so hopefully it won't scar. It is still so tender and sensitive tonight. This dressing now will be changed everyday and they will be keeping a close eye on it. You just don't realize how sensitive your skin is around the neck area until someone is ripping something off your neck. Beside the fluid and dressing change there was the growth factor shot and I was once again low on potassium, so we went home with another baby bottle for 5 hours. Andrew unhooked it and flushed my line about 6. There are always stomach issues that go along with the chemo too, your appetite is not the same, you think you are hungry but then you get full really fast. Today and tomorrow my counts will on the most part be ok then I will start going down. The kids will go home tomorrow as Candes comes down, I have enjoyed having them here.
We spent our three hours at the infusion room today, I don't understand why they schedule so many patients at the same time. My blood pressure was low so I had to get fluids, this takes an extra hour to do this. I think I got my last shot of blood thinner in my stomach today but now I start taking the growth factor shots again. This time it will be to keep my white blood count in tact. Before the harvest I was taking the shots twice a day, at least now it is just once a day. I had some painful shots today, sometimes they don't hurt very much but today was the worse it had ever been, in the stomach and in the back of the arm. They both stung like a bee from start to finish and longer. So far this afternoon we have not received a call to come back in for potassium, so maybe it was ok today. The blood work wasn't completed before we left today. I also started having some pains in my leg, underneath the knee area, we are just suppose to watch it for blood clots, I just need to try to walk a little more, but it is painful to do that. I need to keep the circulation flowing. That is all I need now a blood clot. We have been out walking some today but it is sooooo hot!!!! Gotta to do it though.
I guess Day Four was uneventful since I didn't write anything about it, just pretty much the same ole same ole. I felt a little tired and sluggish but other than that ok.
Well this is the day you wait for, getting the 4 day chemo bag unhooked from your line. You walk away from the infusion center thinking you have left something behind, you kinda have. It is a good thing to leave behind though, you feel free for a change, not having to carry the bag with you. I had blood work done, a blood thinner shot in the stomach and took my pills. Clay and I headed back to the apartment, Kara and Andrew got there pretty soon and Clay headed home. They hadn't been here very long when I got a call to say I was low on potassium and I needed to come back into the infusion room. They hooked me up to my baby bottle that will be run in my line for five hours, (Andrew will unhook it about 11 tonight) and we headed back to the apartment. I thought I would be free one night anyway, not to be hooked up to anything but that didn't happen. Oh well!!!!
This just seemed like a pretty normal day, felt pretty good just a little tired. I figure the swelling will start tomorrow from the steroids. Clay got here around 10 this morning and Candes headed home about 10:30. We had another afternoon appointment to do the bag change and all the other things that go along with it. We stopped to get a little dinner while I was still feeling ok. We are back at the apartment in for the night, Clay said he was too full, he is actually snoozing a little on the couch.
Well we were able to stay in awhile this morning, due to an afternoon appointment. Ever since we have been down here I have had early to earlier morning appointments so today was pretty nice. We went in for my chemo Day two bag change, blood thinner shot, nausea medicine (just in case) and changed my dressing again today, I had a little bleeding from my port line last night. That was a little scary, probably because it didn't happen with round one. The chemo nurse cleaned the area and changed the dressing. The only thing about going late, it makes you later getting out of there.
Well my first day of round #2 is over, it was a very long day, we were to be there at 9 to meet with the nurse and go to the chemo room at 9:30. Well this didn't happen!!!! Andrew was going to leave when we finished but that never happend, we had changing of the guard about 12:15, Candes arrived at the hospital and Andrew headed back home. Candes and I were there all afternoon, we got back to the apartment about 4:30, as I said it was a long, long day.
I recieved one chemo through my line today, this was a chemo that I hadn't taken before. This could be a rough one, it may cause me to be sick at my stomach (which Praise God I haven't been before). Also bad mouth sores will result from this drug. There are just new side effects from this chemo that wasn't with the other ones. I also was hooked up to my 24 hour a day X 4 day chemo bag that I take everywhere I go, I mean everywhere.
I fear being sick, I just pray that I won't be sick at my stomach, I see so may people down here that are, I have been lucky so far
We had to be at the hospital at 6:30 this morning for my appointment to get my line put in. The ordeal itself wasn't too bad, it is just getting adjusted to having it back in. It feels like you have something jammed or wedged into your neck/upper chest area. But I guess you actually do have. Not that you ever get use to it but it will get less uncomfortable as time goes by.
We saw the doctor late this afternoon, he says everything is moving in the right direction and we were ready to move forward to Round #2. I go in tomorrow morning to go over my meds with the nurse, renew my prescriptions and then on to the chemo room for my first treatment.
Andrew and I made it back down to Little Rock around 5:30 this afternoon. Now for the fun of unpacking again and putting things where they need to go. We settled in and decided Andrew would make the Walmart run tomorrow probably while I am resting. I get my line put in early in the morning so I will be a little sore and tender, so I may take a little nap before we go back in to see the doctor. Please continue to pray for my strength to withstand round #2 of treatment.
Thank you for all your prayers and support up to now.
I have been enjoying my second week at home, trying to build my strength and getting ready to start again. I do feel better, feeling stronger everyday. I hadn't heard from Little Rock yet, as far as my schedule, as what day I need to be back down there. We knew it would be either Monday or Tuesday of next week. Well, my plan was to call the scheduling nurse on Wednesday to get my schedule, but before I could call her, she called me. My schedule was already set up to begin on Friday, July 31st. This was not in the plan when we left Little Rock two weeks ago, we were told that we would report in Tuesday, August 4th. Well plans changed and I scrambled around to figure out what I could do or who would take me. Since I mentioned this was not in the plan so it really wasn't anyone's shift. Clay's sister Darcy said she would be glad to take me to Little Rock, we headed down Thursday afternoon, of course in the rain, it rained the entire time. I was scheduled for early morning blood work then a 9am Pet Scan, after that I met with the reseach nurse to get an update of the upcoming week. The only other thing I had to do was the bone marrow biopsy, even though these are painful I have had I believe 3 already. I am here to say that by far this was the most painful one I have had. For one, they were training a resident to do bone marrow biopsy's, he introduced himself to me as a resident. My question to him was "have you done this before" he said yes 12. Well 12 is not a bad number if he has gotten it down. Well it was very painful, he was trying to pull a little blood as well as a little piece of bone. He was having no luck at all, he kept going in my tailbone deeper and deeper. This is like drilling, if you can imagine. After some time of this went by with no luck, he passed the tools on to someone else. She knew what she was doing and it just took a matter of moments. I was so relieved, I have never had such a bad experience with this.
After this was over, we headed back to the apartment to gather up our things and head back home. We made it back home between 7 and 7:30 Friday night.
Andrew and I will head back down Monday afternoon so we can be there early Tuesday morning. I will get my line put in at 7:30 am and I see the Dr. at 4. We will go from there, I may start something on Tuesday night, more than likely it will be Wednesday. I will probably be down there for approx. 3 weeks again this time.
Please pray that I can be strong for Round # 2 and handle all things that are thrown at me.