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.
Saturday, September 19, 2009
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.
Thursday, September 17, 2009
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.
Wednesday, September 16, 2009
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.
Tuesday, September 15, 2009
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.
Monday, September 14, 2009
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.
Sunday, September 13, 2009
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.
Transplant is set for tomorrow.
Saturday, September 12, 2009
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.
Friday, September 11, 2009
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.
Thursday, September 10, 2009
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.
Wednesday, September 9, 2009
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.
Saturday, September 5, 2009
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.
Friday, September 4, 2009
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.
Thursday, September 3, 2009
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.
Tuesday, September 1, 2009
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.