Just a short note, I am back home, Andrew and I came on in Tuesday, November 24 th about 10:30 pm. It was good to see home, got a nights sleep and a day of rest on Wednesday. Andrew made a pot of chicken soup for everyone, we celebrated Kara's birthday (I didn't know if I would be here for it or not). On Thanksgiving we ate at my mom's house, I had about 6 bites total, but it was good to see some family.
I am still very weak and tired as well as not feeling my best. I need to eat and drink but right now that is very hard.
I wanted to thank you for your continued prayers for my strength and healing.
I have had some rough days, some up and down days but I hope things are looking better now. I still have a ways to go but I am doing better, Kara was with me today and yesterday, we talked to the the APN she told me that I was ready to go home (if I was ready) my counts are good good right now, I will just have to learn to eat and drink. I am still having issues with that, nothing tastes good. Andrew came today after Kara and I got back from the hospital and Kara headed back home. I do have a Dr.s appt tomorrow and he will let me know if I can go home or not, it will be his decision, but partly my decision as well. If I get to go home, I hope I can enjoy Thanksgiving Lunch at my moms, dressing sounds really good but I just don't know if I can eat it or or not.
Wow, even lower here I go!!!! It was a struggle getting around this morning to go to the hospital. It takes everybit of strength to take a bath, get yourself dressed or even walk across the room. Candes scrambled us a egg for breakfast, that tasted pretty good. When we arrived at the hospital Candes did picked us up a wheelchair, again today I would have never made it on foot. My BP was lower today, I had to get two units of fluid today, along with the other things, nausea meds, blood thinner and growth factor shots and I was low on potassium so I went home with a 5 hour baby bottle. They said I would probably need platelets by tomorrow, we will find that out when we go in. A few more days of this and hopefully my counts will gradually start coming back up. Candes made us some potato soup tonight, it was very tasty, it hit the spot. She always tries to cook different things that might taste good to me. Candes will take me to the hospital and stay with me till Clay gets there, then she will drive back to Fayetteville. I pray for safe travels for Candes and Clay. We will still have several more days of low counts, low energy and rough days ahead. Clay may have his hands full this week end.
My counts are still coming down today, it seems like it takes along time to get to the bottom from the top, I think you feel every bit of it along the way. Andrew took me in this morning, we stopped to pick up a wheelchair, we didn't think I could make the walk today. I am just so tired, and wore out, you feel like you need someone to lift your foot in front of the other. My BP was so low today that again I got fluids, nausea medicine, blood thinner shot and today I started on the growth factor shot. This will help distribute and boost my stem cell to where they need to be. Hopefully by tomorrow I will be about as low as I can be, so after that we can only go back up, so that is our plan, that is what we look forward to. It was a very tiring day, having no strength puts a damper on anyone, I myself don't like it. I just have to be patient, knowing that things that go down must come back up. I just want it sooner more than later. Candes relieved Andrew today, so this visit is probably not going to be very fun for her, I am not at the top of my game, but I know she will take good care of me, she always has. That's what big sisters do, right? We came home, I had to rest awhile, then we did go outside to walk just a few minutes, just to get some air. It just about did me in, but we did it. Candes fixed some rice and some cinn. apples, they were good, I actually ate pretty good.
My prayer is to have this go as smooth and easy as it can, deal with what you send my way and be as brave as I can. And when you feel like it is time for me to regain my strength I will accept it with grace. Lord, I trust you and I leave it all in your hands.
Counts are still coming down, I am not at the bottom yet, even though I feel like it. Yesterday I was very tired but with Andrews help we walked in. It is a very long walk from the Parking Deck into the hospital and up to the 7th floor when your feet just barely scoot in front of you. I know that it is good to walk as much as you can, but there may get to be a time I have to resort to a wheelchair. That may be tomorrow or the next day. I just want to be strong, but when you are dehydrated and your BP is so low then it might be time to take a ride. We will see, today again we went in at 10, pretty much the same routine, they take your vitals, draw your blood and send it to the lab. They knew instantly today that I needed fluids, my BP was so low that it wouldn't even register. They started on me right away, they also are giving me Zofran in my line for nausea, I am dealing with quite a bit of that. That yucky, quizzy stomach all the time. We came home today, I rested awhile, maybe slept awhile and then later Andrew and I went outside to keep me moving a little bit. It was very hard but I hung on to his arm every step of the way, he didn't have to drag me too far. :) I know Andrew has been a little bored down here this time, with me feeling yucky, we haven't got to get out and do things or go to eat. He has had to come up with things and try to figure out something I would/could eat. That is not easy these days, still hardly nothing tastes good, even the fluids is still a struggle. We are trying to find things. We wwiil go again at 10 Wednesday, Andrew will stay with me till around noon, Candes will come in then and Andrew will head back home soon after that. Thank you Andrew for you understanding and your patience with me. I love you.
We had to be at the hospital at 10 this morning, for blood work and vitals. The blood work seems to take awhile some days, we waited for some time. You always want to wait on the blood work, this saves a trip back in if you need anything. Well they thought I would be good to go today but I needed fluids, so I had to get a liter of fluids, this takes right at an hour to run through my line. My WBC is dropping fast so by tomorrow I should be very tired and ran down they said, it will mean getting the mask out and wearing it, once this happens I will pretty much be apartment and hospital bound. We didn't get back to the apartment till almost 2 this afternoon, Clay got around to head back home as Andrew was heading this way. We go in at 10 again tomorrow.
Yesterday I went in for my stem Cell Transplant, it was not alot different than any other day besides long. Candes took me in, my appointment was at 9, Clay got there in time for the transplant and Candes was still here as well. The transplant doesn't take long at all, probably about 20 minutes tops, an APN stays in the room with you while the cells are going in your line. What takes so long is the waiting afterwards, they keep you 3 hours to watch your vitals just every few minutes, it turns into a long day. Clay and I came back to apartment for awhile, we decided to run to Olive Garden to eat a little dinner. I ate a few bites of salad, then I ate a few bites of Clay's chicken Alfredo, that is all I could possibly eat. I rested pretty well last night.
Today we went in for blood work, you just have to wait until the lab has your results, which some days take longer than other days. We went in at 10 this morning, we watched the first half of the Razorback game at the hospital. When my blood work came back I needed fluid and my uric acid was high so they gave me a little bag of meds to get that down, I also got a shot of Pepcid in my line, I am having alot of trouble with acid reflux, I am already taking medication for this but it is not enough. They say it is due to the chemo. That is all I had to do today, no bottles to bring home, that will probably come later on. I am getting a little tired but not feeling too bad so far. We finished watching the game here at the apartment. GO HOGS!!!!!!!!
Today Candes and I went in for my chemo, as like the chemo I took before my last transplant, it is the heavy duty dose. They give you anti nausea meds before the chemo, I feel fine tonight, it usually set's in a couple days later. First thing that happens is the tiredness, I hope and pray that's all I have to deal with this time. Tomorrow my appointment is at 9 so my stem cell transplant will probably be around 10. After the transplant they will keep me there around 3 hours watching my vital signs. Clay will meet us at the hospital and Candes will head back home. We will just see what the upcoming days bring.
News from the doctor today, we are ready to move on. We met with the doctor, nurse and research nurse to get ready for the next phase. This involves more meds, some new, some the same, increasing the dose on others. I have always had a problem taking pills, I hate taking pills, I gag almost every time. So now I have more to take, I started back on my Dex (a steroid) 10 pills each morning, at least I only take those for 4 days.
I am scheduled for the big dose of chemo tomorrow at 11 and my transplant will be on Friday. I hope my body is ready for this, that I am strong enough to endure the side effects that it might bring this time. I pray that maybe it won't be as harsh on me this time and my turn around time will be shorter.
This just throws me behind 4 days but that is almost a week in recovery time. We thought I would be home about 3 days before Thanksgiving, now it is looking very slim. I may get to spend it down here, I probably won't have an appetite anyway but I will miss being around my family. We will just have to make this call as we get closer.
So we just gear up for tomorrow and hit it head on, we are going to beat this thing, after this round I can actually say the worse is over.
Andrew left around 11 and Candes got here at noon, I told Andrew to start on home, I was fine knowing that Candes would be here within an hour.
I think I am about to float away, but I seem to always be low on fluids or dehydrated. I am still going in for fluids and bloodwork as well as the antibiotic each day. These pretty days I am trying to walk quite abit outside and enjoy the sunshine as well. My energy level is still kinda low so I can't do alot but I am getting better. One more day as far as we know of fluids then we see the dr on Wednesday and he will determine what's next.
I still ask for your prayers in getting my strength back so we can move on with Transplant #2.
Also pray that I can get my appetite back as well as finding something that taste good to drink, I am still having a hard time with tea, water or anything else. Soft drinks are too sweet lemonade is too sour. I just need something in between that is just right.
Andrew is with me now, he encourages me to keep moving, but he is also patient with me as well.
Things are not always set in stone, plans change or someone changes them for you. As you read in my last post we were coming back to Little Rock for my second stem cell transplant. Clay and I met with the doctor on Friday to see if things were still on schedule and if we were moving on as planned. We visited with him about me being so sick when I was home this last time, he realized my energy wasn't where it needed to be, I was also pretty dehydrated. He also noted that there might be just a little infection trying to start, and he wanted to get that taken care of as well. So the plan is to go to the infusion center each day to get fluids to get me built back up and then we will go from there. Yesterday after the doctor's appointment I got my line put back in, it wasn't very pleasant this time. I have heard that after you have one put in several times you build up scare tissue, I guess this can be true. As far as I am concerned I don't like my jugular vein poked in that much. After the line was put in we headed to the infusion center for fluids, today they ordered 2 liters, then the other days I will just get 1 liter. Today we went in for fluids and they also ordered a bag of antibiotic to run through my line. So as far as the chemo and the transplant, we are holding off a few days to see if my counts get back to where they need to be. I have an appointment to see the doctor on Wednesday and he will make the decision whether to start chemo and transplant next week or wait a little longer. So right now we are just here doing what the doctor says. I will keep you posted on the plans.
Well here we are back in Little Rock for more testing this week, we drove down yesterday. Might I add it was a beautiful day for a drive, the sun was shinning, which made the trees and leaves very pretty. Unlike every other day we have had with the rain, yesterday was perfect. I have a new caregiver this time, a friend of mine Michelle brought me down. I know we could have had a much better time if things were different with me, we could shop, go out to eat and all kind of fun things BUT things aren't like that these days. I am a little wimp, or a party pooper when it comes to doing anything, I am just too tired. We got here about noon yesterday, just enough time to check in the apartment, unload the car and sit just a few minutes before going to the hospital. First stop was 5th floor where I picked up my packet/schedule, had blood work done and met with a nurse. After this we were heading over to have my Pet Scan and after that we were free until my MRI which was scheduled at 8pm, they got me in about 30 minutes early so we left the hospital about 8:30 last night. It made for a long day, I know for Michelle it had to be really boring just sitting, waiting.
Today was a new day, Michelle and I needed to be at the hospital at 8:30 for the bone marrow biopsy, this of course is something I always dread, it did hurt but it wasn't quite as bad today as times in the past. Always glad to get it over though. Michelle went in the room with me, so she got to see how a bone marrow biopsy is done. After the biopsy we headed to the 5th floor to meet with the research nurse for a few minutes and then we were out of there. We stopped at Olive Garden for some soup, salad & bread sticks, it was good I had a few bites but just got full very fast. It has been raining all day, so after we went back to the apartment I was ready to take a nap, I was just real chilled when we came in. I slept for a couple hours, after I woke up Michelle took my bandages off my back, the other layer stays on for 4 days. We just stayed in tonight, kinda a veg out night. Michelle ran to the store to pick up some popcorn and to Sonic to pick up drinks. It was a good TV show night so we just enjoyed our lazy time.
Tomorrow is another day, Clay will be here in the morning and Michelle will head back to Fayetteville. I know the weather isn't suppose to be any better, I pray for safe travel for both of them, coming and going. Clay and I will see the doctor tomorrow to make sure I am on target with treatment. Saturday, October 31st I think will be a free day, Sunday, November 1st will be the heavy duty chemo day and Monday, November 2nd will be the Transplant Day.
Thank you Michelle for rearranging your schedule to be my caregiver this week. You did good!
My days are numbered now to be at home, it is almost time to head back to Little Rock. I will leave next Wednesday morning, I have alot of tests scheduled for that afternoon. There will be more tests on Thursday (bone marrow biopsy) and then on Friday I will meet with the doctor. As long as he thinks I am ready to move on, then we will move forward with the chemo and transplant the next week. I am finally beginning to feel human again, I still don't have all my strength back yet. I am still weak and a little shaky but I know things will get back to normal in time.
I have still been doing blood work twice a week at Highland Oncology, I am also going in everyday to receive fluids. The fluids just make me feel a little better and give me a little pick me up. It seems like my time at home has just flown by since I was sick the first two full weeks, it makes you want more time at home. But the sooner I go back the sooner I get through this whole ordeal. I am hoping to do the transplant, get my counts back up, get over any sickness, get my energy back and be home and enjoy the holidays. I want to enjoy baby Jonah's first Christmas. I will miss his first Halloween, Adrienne is working on his costume so maybe we can get a sneak peek before I go.
I know I am way behind on my posting but I have been a little under the weather. I won't post everything that has been going on since my last post, but I will touch the surface. Some of my thoughts may be random and not in order as they happened, since I haven't posted in awhile you seem to forget what went on. Some things you choose to forget.
September 20, Kara was with me, I bent over to pick something up, I felt a pop in my lower back. It just seem to get worse, I told the APN the next day, I was given pain meds. The meds didn't seem to do anything, they ran an MRI which didn't show anything. The pain in my back seem to get worse everyday, getting up and down got to be almost impossible. This has gone on for almost a month now.
October 2, Candes and I did our routine with blood work and then on to the dr's. appointment in the afternoon. With much discussion about my time to come back for the next transplant I was released to come home. There is such a thing called bridging to stay home for 6 weeks or more, if you do this there is a lot more medications involved, nasty meds that I have taken for a short time, but this would mean taking them for about 3 weeks. We all felt like the shorter time at home would be the best. This was late in the day and I still needed to get my line taken out, so Candes and I waited to head home on Saturday. Clay normally comes down on Friday but Candes thought since she was there already there was no need for him to come down and turn around and go back. Since we were going home for almost 4 weeks we moved out of our apartment, this meant everything had to be packed and loaded up. Remember I have the back issue and after they take your port out you cannot stoop over or lift more than 5 pounds. So guess who got to pack and load the car, yep Candes. She said she would do it, but it was quite a chore by the time she finished. We seemed to have more than we took.
This was the best decision since Clay had been suffering with the upper resp. crud most of the week. I even spent Saturday night at Candes' house, this gave Clay another day to air out the house, at this point I didn't need to catch a bug. Clay came to pick me up about noon on Sunday, it was sure good to get home. I have been dealing with this back pain, once I get up and moving it's not as bad but the getting up and down is so painful.
October 4, I started with the nausea, vomitting and more!!!! I spoke with Little Rock about this, I was told it was due to the Chemo that I was given. I thought it would last a few days but it lasted alost 2 weeks. Finally on Oct. 15 when I went in for blood work I ask if they would take my B.P. well they did and it was very low. They thought I needed to see the dr., I met with Dr. Rosenfeld, he felt like I needed fluids, vitimans, and electrolites and some nausea meds to get me feeling better. So I battled this yuk feeling for almost two weeks, we tried everything, eating, not eating, liquid diet, nothing see to help. I am not eating much right now, nothing taste good, or it doesn't taste like it should. I will be glad to get my taste buds back, I know I have to drink as well but there again even the drinking is hard, I haven't found anything that taste good, I know I have to force myself to drink so that I can stay hydrated.
October 16, Andrew took me in for fluids today, then we stopped by my office just a few minutes to say Hello. It was good to get out, it just wears me out, my energy level is very low. The nausea seems to be gone, my back is getting better, there is still some pain involved. My whole body seems to be sore all over, probably due to the setting around that I have had no choice in doing.
October 17, So as I think back over the last month, it seems to have been a roller coaster ride to get to this day. I'm am glad that I have made it this far in the treatment, but I will also say that I will be real glad when it's over and I can close this chapter of Barbara's Journey. I will be home about 3 1/2 weeks this time, but I have already used up 2 with being sick, so I look forward to this next week and hope I can enjoy the rest of my time at home.
So I ask you to continue to pray for my healing, strength and for my body to recovery before my next transplant. My next transplant is scheduled for November 2nd, that is if everything checks out with my blood work when I get back to Little Rock.
Sorry I haven't posted lately, I have pretty much been out of it, even tonight I am very tired. I just wanted you to know I am still around and will do some posting real soon. So bear with me and watch for my updates in days to come.
I didn't post yesterday, I just couldn't, the chemo really hit me hard this time. I guess I feel so fortunate, up to now with my treatments, don't get me wrong there have been some bad days. but nothing like this. I knew the chemo I was given last Sunday was going to be powerful, but you never really know how it will actually affect your body. Besides dealing with the tiredness, fatigue and weakness there is the stomach issues to deal with most of which I won't go into. Anyone that knows much about chemo realizes that it can do a number on your stomach, anything from you not being hungry, not wanting to eat or drink, nothing taste good, or if it does you fill up so fast. You have to try to eat to keep some of your strength up, and you have to drink as much as you can, this is how the toxins leave your body. The more you drink the more you go to the bathroom, if you hold the fluids inside then you have major issues, it can always run into some type of infection. Normally I don't have any problem drinking, I am a big sweet tea drinker and I drink alot of water, but with this chemo, nothing tates good, it is so hard to find something you just want to drink alot of. I am trying my best to be a good patient, but it is hard sometimes. Today my blood pressure was very low, it wouldn't even register when I stood up, they take it when you are setting, then they take it with you standing, I was so weak I couldn't hardly stand up and it was taking too long for it to register. They decided I needed fluids stat, so I was assigned a room and we got started, fluids, blood thinner, nausea meds, the usual routine. Today, since it is Saturday they sent us home with a antibiotic baby bottle, just in case my temperature comes up in the next few days. This way whoever is with me can hook it up to my line instantly instead of waiting to go in the next day. We always hope for no infection to set in, but just in case we are prepared.
Yesterday when Candes and I went in to the hospital I was so weak, she pushed me in a wheelchair, I didn't want to at first but I really needed to ride. There is quite a walk from the parking lot to the area of the hospital we need to go, including an uphill slope, I don't think I could have made it. Today I am still very weak, I wanted to try to walk it today, Clay and I did it together, it was pretty tiring but we made it. I know if I can and when I can, I need to move around as much as possible. 1) for my lungs-breathing 2) avoid the risks of blood clots again 3) keep my muscles moving. Clay and I are watching the Razorback game at the apartment tonight. I really don't like the feeling of someone having to take care of me, I feel so helpless. It has been a trying few days and we are not where we need to be yet, my WBC did drop to zero today, so a few more days of this before my counts starting going back up. I had to put the mask on today, don't want to take any chance catching a bug of any kind. I feel very blessed and fortunate that I have the family support that I have, I know that people have to sacrifice and rearrange their routines so they can take a shift with me. I say Thank You to them for all their love and support throughout this journey. I can only tell them how much I love and appreciate them. Schedule for the week: Clay arrived this morning, Candes headed home, Kara will come down tomorrow and Clay will head home later in the day. I have a Dr's appointment on Monday, I think Andrew will come down Tuesday afternoon.
It is really hard to describe how I am feeling, as I posted yesterday I am just so tired. But today it is even more than that, I just feel really yucky, I don't like to give in to something like this. I am just so tired and sleepy, that is really all I can do is rest. The nurses tell you that you need plenty of sleep and rest, I just haven't felt like this during this journey, I feel like I am wasting my time. I know my counts have started to go down, but there is along way to go before they hit bottom. You just feel useless or helpless, that you don't have enough energy to hardly get across the room. I had to get fluids today, that was all I was really low on. Candes brought me home, put me to bed and then she made a Walmart run to pick up a few things. She made us a bowl of potato soup and cornbread for supper. It tasted good, I just get full really fast. This will be short tonight, I will be nodding off here real soon. Please pray for my strength, energy and patience to get through this rough time.
I slept pretty good last night with a little sleep aid, I wasn't even wanting to get up this morning. I am just sleepy and tired, They say this is the way it will for awhile, it is the beginning of things that happen when my counts start to go down. I had to get a bag fluid today and I was also really low on potassium, they hooked me up to one infuser and then sent me home with 2 more. This will be changed out during the night through my line by Candes, she said she would set the alarm so she could get up change it out. This will be 15 hours of potassium, hopefully that will help me feel a little better as well. Today was just probably a normal day, just my strength seems to really be going down in a hurry. I guess that is the plan, loose your strength and energy, your counts drop, then you can head to the upside of all of it. Building my counts as well as my strength back up and on the road to recovery. I don't want to speak to soon but, so far so good as far as the nausea and the vomiting it has not hit me, I just can only pray that it doesn't. Also, the same with the mouth sores, they could still appear, we just keep our fingers crossed that I won't have to experience them. It has been pretty much much a gloomy, rainy day today, Candes had to drive down in the rain most of the way, I think Clay also had to drive most of the way home in it as well. It was hard to see Clay go, we got alot accomplished this time, if all goes well the stem cell transplant will be a success and that is the total plan.
We made it through last night ok, I had slept most of the afternoon so I didn't sleep quite as well last night as I did the night before. But I did get alot of rest. Clay fixed biscuits, gravy & bacon for breakfast this morning, he did good. We got ready and headed to 7-C to see what the plan was for today. As usual I had blood work, vitals taken and I had to be given a bag of fluid, my blood pressure was a little low. I am feeling pretty good, just real tired feeling like I need alot of rest. I have the hand shakes a little, they said that was due to the Dex. Steroids that I have been taking. I finished my last dose of the Dex this morning, so the shakes should ease off some. My counts seem to be alright today, it will be a few days before they really start dropping. This is when my counts they say will drop to zero, I am sure I will have a few rough days there, until my counts come back up to where they should be. During this down time I will probably have to get blood and platelets at some time or another. I do seem to feel okay tonight just a little yucky and I also get a bad case of the hiccups ever once in awhile that hurt your insides, I hope this passes.
Clay will head back home tomorrow afternoon, it has sure been good to have him here for several days, through the chemo and the transplant. Even though the worse may not hit me until next week, he got to be here for what we have worked for for several months. We have had a few good days together. Candes will come in sometime tomorrow, they have been on vacation this past week, but will come down to take her shift.
The day we have waited for was finally here, we headed to the hospital about 8:15 to get ready for my stem cell transplant. Pretty much the usual, blood work, vital signs and assigned to a room. They hooked me up to oxygen for the entire process, and took my blood pressure every 15 minutes. I was given my anti nausea pills, a bag of fluids before the transplant began. Once they hooked up the stem cell bag it took approximately 10 minutes to run through. Seems a little crazy for all the build up for a 10 minutes process. They had mentioned to us that during this process that I would have an odd taste in my mouth, such as cream corn, garlic or roasted chicken. Well my taste was the cream corn, this was very strange and didn't last long, they have you to suck on hard candy and this helps a little. The strange thing is that after this you can't smell the preservatives on you or your clothing, only the people around me, Clay says it is pretty strong, though he couldn't put a finger on what the smell really was. When he steps outside and comes back in he says it is really strong. He is washing my clothes now to get the smell out of them. They said this smell could last a couple of days, it is just so strange that I can't smell it now. But I am not complaining, this part is over, and besides we should be downhill from here, we can only know things will get better. The old saying says what goes up must come down, we are going to turn that around to say what goes down must come up. This is concerning my counts, they will drop down this week but they will come back up just the same, I was high on uric acid today, so I had to get a little bag to try to get it to come down, then before I left I had to get my blood thinner shot. After this we were dismissed to go.
I was just really tired when Clay and I got home, I slept about all afternoon. We didn't let our chicken go to waste, he grilled out tonight and baked potatoes. It tasted really good to me, I got full really quick.
Clay and I headed to 7-C at the old hospital around 8:15 this morning for my 9 am appointment. The first thing is vital signs and blood work before you are assigned to a room. Normally there will be 2 people to a room, it is like a hospital room with recliners for the patients to relax in. The room is also large enough for your caregiver to have a place to set there with you. The next thing that was done this morning, I was given a bag and 1/2 fluids to protect my kidneys. I was given 2 anti nausea pills to protect me from getting sick, then I had my blood thinner shot. Then the chemo arrived, a chemo called Melphalan in a bag, I thought it was going to be a shot of chemo in my line. It was a bag instead, of course it did go through my line but it was a much larger dose than I was expecting. I had been given this chemo in a smaller dose before, but never a large dose like this. This type of chemo can cause mouth and throat sores, especially in patients with kidney issues. They encourage you to eat a lot of ice all during your time there, they say this will help with maybe preventing the sores. I am an ice chomper anyway, they just want you to basically freeze your mouth. After the chemo bag was empty we were free to go home. I had to continue the ice routine for about an hour and a half after we got home. Darcy had picked up some Popsicles for just this, they sure came in handy, I ate 2 of them when we got home.
Clay had planned on grilling out tonight, but the nurse mentioned not to eat anything hot tonight so there went that idea. I can have cold or lukewarm tonight. Grilled chicken just isn't the same cold as it is hot, we will just wait for another night to grill out.
As far as I know we visited the Chemo Infusion Room for the last time for now. I had blood work done, my dressing change and my blood thinner shot. This will do for the folks at the infusion room, I will start doing everything at 7-C. This is in the old hospital, I will still do everything as an outpatient, I will just come and go for everything I do, it could be once a day or twice a day.
Today was just a restful sort of day, Darcy and I got home from the infusion center about 11:30 and she headed back home, Clay was already here at the apartment. It is always good to see him on the weekend, since I am having the transplant Monday he will be here a little longer this time. One of us seem to have to hold a job these days, so I guess since I am the one taking treatment I will stay and he will go to work. Clay has been down here with me from start, to now seeing the light at the end of the tunnel for this first transplant. He is my Rock, bless his heart, he may not always physically be here with me but I know he thinks of me everyday, as he picks up the mail or on the phone with my insurance people, or on the phone to the hospital (UAMS) trying to take care of the billings and insurance fillings. I could never do this without him. He has really been given a heavy load, taking care of me (again) and keeping all the paperwork kept up. I don't know how he does it all. Thank you babe. I love you!!!!! Clay and I went to dinner tonight, knowing we would be in for a few days beside going in to the hospital everyday. After dinner we ran to the store, to pick up a few things that we needed and were out of.
Tomorrow is my Chemo day, I can only hope for a good day, I will hold my head up, keep my spirits up and go in with the plan that it will be ok. I pray for the best going in, and throughout the week as chemo works through my system.
Things are winding down or we are gearing up, one of the other. We are getting close to our goal that is, we are anxiously waiting for the transplant. We have been waiting a long time for this to take place, and Monday is none too soon. My central line (port) was placed in today, it is a little painful and has been most of the day. It will ease up at least a little tomorrow and a few days to come, they will change the dressing tomorrow. This is always done 24 hours after the line is put in, there is a gauze packing and a rather large sealed tape bandage holding it in place. They secure it very tight so you can hardly move your neck, so I will be glad to get a little freedom tomorrow with the new dressing, you still feel like you have a stiff neck but not quite as bad. Darcy has been with me through these procedures and been a good nursemaid. I have enjoyed her being here, we have had a good visit, even though it has not been the most pleasant of times.
Andrew will be leaving today to head back home, he is such a help to me while he is here. He knows all the ropes by now and if not he will find out. He found his way around this place very early on, so that helps me get around. He is always keeping me straight when I start to go the wrong direction, and always keeps us on track. He also wants them to do things in the right amount of time, without a lot of unnecessary waiting, he knows who to ask if things aren't getting done the way they should. He steps up to the plate.
Everyone says he should go into the medical field of some sort because he has mercy, compassion and a lot of medical knowledge. Even though he is good at this kind of thing, I don't think that is the area he plans to focus on. Just as long as he finds something he is happy in doing, that's what is important to me.
Darcy (my sister in law) will be coming in today, we will go to the doctor to get my orders for the next few days.
This morning was a little more laid back than yesterday, we stayed home till about 11:30 this morning. Our first stop was to meet with the research nurse to discuss our next step and for her to go over all my tests to make sure nothing had been left out. All testing has to be completed before we can move forward with the transplant. Next appointment was with the thyroid surgeon Dr. Stack, this was the first time I had met him. I was impressed, I really liked him after meeting him today. We discussed the time frame for having my thyroid surgery, after my first transplant. I also met with the oncologist, he is the one that had done my biopsy back earlier. He will also be on board to start me on medication as well as giving me the radioactive radiation. (a one time thing) Then we headed to the chemo room to get a blood thinner shot. Sounds like a whole days worth already, but MRI then we will be done.
They have scheduled my transplant for Monday, September 14th. Things leading up to that will be:
1) meeting with the doctor tomorrow
2) meeting with the nurse to line out my upcoming medications
3)having my port put back in on Friday
4) getting a heavy dose of chemo on Sunday
This is what we have been waiting for, my hope is that when my counts come back up from this, I get my strength back and start to feel really good. You know I should I will have all healthy stem cell in my body now, it only makes sense.
Welcome back to more testing. We are back at the Rock and going full speed ahead with test, test and more test. Yesterday was a busy day, Andrew and I left the apartment at 6:45, we stopped at Denny's to have breakfast, I needed to eat before some tests I was having later in the day. I could have scrambled eggs and bacon, oh and water. No toast, biscuit or hashbrowns. And what is worse no mints or gum, I am a big time gum chewer. Bad habit I am sure. I could drink water up until my test at 5 but no food, I did take some bacon to go, that I got to munch on at 10:30 then that was the cut off. You could probably do fine, it is just that knowing you can't eat that makes you go crazy. We met with the data manager, had labs drawn and picked up my schedule and we were moving onto the first stop. I had a Spirometry which is a very hard breathing exercise, then an Echo. After this we had a little time to kill before the bone marrow biopsy, and then on to the Pet Scan at 5. Again the bone marrow biopsy was pretty painful, always glad for that to be over. The Pet Scan lasts a full 2 hours, Andrew and I were so hungry when all of the tests were over, we were ready to eat some dinner. After we got back to the apartment I was about ready to call it a night, all that testing wears you out. We have another busy day tomorrow.
When I got out of bed yesterday morning, I could tell that the pain in my leg was a little less than it had been in previous days. Some pain was still there as I moved around but not as bad, being on it for an extended period of time is not real good. I had plans for an outing, Kara picked me up from home and dropped me off at my office. Some friends from work and I had planned to have lunch while I was home if I felt like it. It is always good to see the people I work with, they have been so good to me through this journey. They are always sending me care packages while I am Little Rock, they make sure a week doesn't go by without sending something to me. They have made things so much easier and my stay away from home a little less stressful. I work with a great bunch of people. I will never be able to thank them enough for everything they've done for me. I appreciate each and everyone of them. I did get to visit with a few people, I never have enough time to see everyone. The ones that I didn't get to say Hello to hopefully I will get to see my next visit home.
We will head back down to Little Rock on Monday afternoon, ready for several procedures and tests on Tuesday. I have a busy week ahead of me and the following week plans are being made for my stem cell transplant. I look forward to the day of the transplant, this will be what we have prepared for the last 3 months.
That's what I get for thinking that I would get out of having a bone marrow biopsy this time. Well, I have been on the phone with Little Rock and Highland Oncology this afternoon, I will have to have the bone marrow biopsy after all. Little Rock says Dr. B. will want the biopsy done, so I have to stop taking the coumadin now after just two doses. HOG felt like I have enough in my system to help thin my blood, they mentioned they didn't want to get it to thin. If you are having a bone marrow biopsy done you have to be off all bone thinners 24-48 hours before the procedure. I am still on the Lovenox shots, I will take my last one on Monday. My biopsy will me on Tuesday 24 hours later, I will probably have to be on some type of blood thinners for awhile due to the blood clots. That will be for Dr. B. to decide whether or not I will need to go back on blood thinners before or after my transplant.
You know it is a shame to feel good but have other issues. I have been dealing with these blood clots for over a week now and it is getting old. Like I said, I really feel pretty good after my last treatment but I have to deal with the blood clots. Maybe if I had blood clots that weren't painful it would be different, they have been so painful to walk or move around at all. On Tuesday I was setting outside, a little before noon I stood up and noticed that the pain had traveled from my upper thigh to my groin area, I thought this is not good. I thought I would see how the day went and call the doctor on Wednesday if the pain was still there. So it was and I did, I called the dr. office and of course they wanted to see me at 3.
After all the treatments this last time I kinda wanted to do something for myself, two things I thought of: 1) a much needed pedicure 2) a massage.
Well Wednesday morning I had made an appointment for a pedicure, my sister in law Darcy came to pick me up and took me to do just that. I was glad to get this done.
As far as the massage, I had made an appointment for Thursday but I had to cancel it. My nurse at Little Rock, my APN at Highland and the Ultra Sound Tech all said NO! Due to the blood clots they didn't think it would be a good idea to stir things up, it makes sense but I was really disappointed. There is always next time.
Candes came to pick me up for my appointment, since the clot had moved Dr. Travis didn't feel good about it and sent me for another Venus Doppler Ultrasound. We headed over to do this, Clay met us there and Candes headed out. They had us to wait there so the Radiologist could read the report and call my doctor. They feel like there is a deep clot trying to form behind my knee, due to the blood being so thick. I am on blood thinner shots but they may have to do something else to help thin the blood. I am suppose to hear from the doctor this morning to see what he wants to do. Well, I had just finished writing this when HOG called, they said I did have a deep clot forming so they wanted to put me on Coumadin, this is another blood thinner. I will take this in pill form in addition to the shots I am already taking. Hopefully this will take care of the clot and we can just move on. I am due to be back in Little Rock at 8 am Tuesday, I was suppose to have all my tests ran next week along with a bone marrow biopsy. With me being on all this bone thinner I will not be able to have the biopsy done at this time. This really disappoints me, not really I will glady skip the biopsy this time, I can have all my other testing done except the biopsy. Dr. Rosenfeld said I could be on my leg as tolerated, but when I am setting down have it up as much as possible. When I go back to Little Rock they will follow the treatment that Highland Oncology has put me on. I really had a lot of plans this week, or at least to get out and do some things but that hasn't happened, the weather has been so nice while I have been home I have spent a lot of time on our back porch. We can only hope for better days to come, I look forward to when the pain in my leg is gone.
Yesterday was a busy day, it was blood work day at Highland Oncology for me. Kara picked me up before 11 for my 11:15 appointment, I got in and out pretty quick. This was also the day that they had to drawn extra blood to overnight it down to Little Rock. As long as there is not anything way off with my counts, I will be here rest of the week. This was only the beginning of our time at HOG though. A decision needed to be made, whether or not I would continue on with my blood thinner shots or not. Andrew had given me the last shot that I was prescribed from UAMS. When I saw Dr. Travis last Thursday, he mentioned that he might continue me on the blood thinner shots another week. Well of course you would know that he was off on Monday, so they wanted me to meet with a nurse, then an APN, they were also trying to get the dopler ulrasound report faxed from UAMS. One thing lead to another, and it all lead to a lot of setting and waiting, we were there almost 3 hours and really didn't find out a whole lot. I didn't ask for all of this, I mentioned to them that I could just call back today and talk to Dr. Travis or his nurse. I was told by the APN that she felt sure that he wouldn't put me back on the thinners, I said ok that is fine and we were on our way (finally) to finish our errands. I did have another prescription to pick up, we did that grabbed some late lunch and went to the eye doctor's office. I am still having trouble with my eyes (I think it has been close to 3 weeks now) the itchy, irratating eyes. I did get a tube of medicine to apply to my eyes, they seem to think that would give me some relief. By the time we ran these errands, it was 4 before we got back home. I noticed the answering machine blinking, yes, you guessed it was HOG, the APN had talked to my oncologist and they do want me to be on the blood thinner another week. Imagine that!!!!! I was not a happy camper, to say the least. We can pick this up today and not be behind on a shot. Today I am going to get some rest, not go anywhere and just enjoy my day at home. As far as my leg, it continues to get better each day but there is still the pain involved with it, the swelling has seemed to have gone down, as long as I am off of my leg the redness goes away as well. I still walk with a limp, or as I call it dragging my leg behind. I am getting around so much better than I was though. I do feel pretty good right now besides my leg. I am so grateful that things have go as well as they have during this whole process, I feel blessed that I haven't been sick, really sick like so many people have. You see people down there that are just really sick as they come and go for treatment, you can't feel anything but lucky. I don't know if it is because they caught my myeloma early, if it was that I am overall healthy, or that I am "young" or a combination of all of the above.
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.
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.
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 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.
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.
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.
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.
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.
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.
As I mentioned in the early on post, we came to UAMS at Little Rock for testing. Well, I never would have imagined what all kind of tests they would put you through before we could ever get on the road to recovery. My first visit to UAMS was June 10th, we were to be there at 7:30 to pick up our packet/schedule for the whole week. First stop was the lab, then on to the dreaded bone marrow biopsy, no time to moan and groan because we were now off to xray and a CT scan. Tonight I had to start on a very limited diet for a Pet scan the next day, we went to Outback, Clay and I both had a steak (I couldn't have the bread, croutons or cheese on my salad)and I think it was the best steak that I had ever had before at Outback. Maybe it was because I knew I was not going to be able to eat until after the Pet scan, so I went all the next day without anything to eat or drink. The Pet scan was at 4pm, I was very hungry after that. Other test on June 11th included an EKG, bone survey. On June 12th, I was scheduled for an MRI, Echo and a meeting with the nutritionist. After a weeks worth of fun we were ready to come home. W e headed home a little afternoon, it was good to get back home, even though we knew it was just for the weekend. It was good to see everyone, going to church on Sunday was very emotional but it was good to be around my friends at church. Then back to Little Rock on Monday, June 15th.
We met Dr. Barlogie for the first time. We met with him on Tuesday morning, he talked to us about my poor kidney function and how important it was for me to keep hydrated. He scheduled me to have a 3 line (like a port) put in so I could have fluids daily. This line is surgically sewn in, it was not a pleasant experience, you do get use to it but there is alot of discomfort involved. After the line was put in I was sent to the Chemo room to take in a bag of fluids, this takes an hour or so running through your line. We also found out that 2 spots showed up on the Pet scan as hot spots, one was in my abdomen area (the area of my previous ovarian cancer) and another in my thyroid. This called for another biopsy, they scheduled the abdomen for Thursday, June 18th, this biopsy came back fine. Just a finding of scar tissue. They were unable to schedule the thyroid biopsy the same week. They scheduled it for Wednesday, June 24th, at 4:15.
They told me I could come home for a few days, but I had to have scheduled visits to Highland Oncology to get fluids on the days I would be in Fayetteville. I worked Monday & Tuesday, June 22 & 23, Clay stayed in town to work on Wednesday. My sister brought me down on Wednesday and Clay was here for another Dr. appt on Thursday. We did not hear from the biopsy results until Friday, why it took so long I don't know. The news wasn't good, it was diagnosed to be thyroid cancer. Go figure. We have not talked again to the thyroid dr. but Dr. Barlogie said it wasn't a fast growing cancer, so our goal right now is getting my kidney's in better shape. My thyroid will have to come out, but we are going to hold off just a little while on that. I have a lot going on this week, I will post about all of that later. Clay headed back home to work most of the week, Andrew is here with me for a few days, then my sister will come down for a couple of days, then Clay will be here to finish out the week and stay most of the weekend. So we are always having "changing of the guards" around here. I am so blessed to have "people".
I would like to say a BIG Thank-you for all the prayers that have been offered on my behalf and for my family during this difficult time.