I don't know that anyone is really reading this, but I am so far behind on blogging. I think I am thinking too hard about what to write instead of using this as a therapy of sorts. Writing things down and getting it out there helps me think more logically about certain situations.
Anyway, the heading of the blog...it has been one year and one month since I was diagnosed with Lymphoma. Man, what a though month that was. I remember in April when mom and I went to Mayo Clinic I was having severe pain in my leg, then in May when I had the brain lesion I still had all the pain in my thigh, and it was getting worse. (I think I may talked about this in previous blogs, but I am going to mention it again.) When I had the lesion my balance was very bad, but I was encouraged to get up and walk with assistance. My Dad would walk around the floor with me, and one day when we were walking I stumbled. He caught me but I thought I twisted my foot. My leg was hurting something bad, but we attributed it to stumbling. I had already been checked for clots and other problems, but nothing was there.
I was discharged from the hospital and went on vacation to Smith Mountain Lake with my Dad and family. This was the second summer I was miserable there, but I needed desperately to get out of town. I was tired of looking at the same walls all the time. I couldn't really enjoy myself because of the pain in my leg, knee and foot. (Turns out the mass that was cancer was in the bone and muscle, which was pressing on a nerve on my leg causing pain all down my leg.) The steps from the house down to the lake are very long and steep, and I could only try to venture up and down once a day, if at all. Dad and my brother ended up finding a way to dock at a public access close by so I didn't have to climb the stairs, I could essentially just walk onto the boat. They would take me on the boat to the dock at the house to hang out and the take me back to the dock to bring me home. On one of these occasions I was getting off the boat and my Dad handed me off to my brother, but I miss stepped and fell off the edge of the dock onto the pavement. My balance was still off because of the brain lesions, and we were trying to be cautious of this. Boy Dad was pissed that no one caught me. Of course, I landed on the leg that already hurt, and spent the rest of the trip absolutely miserable. HOWEVER, this was an improvement from the previous summer where I didn't even get out of bed unless I had to pee. This was the summer I had a fractured back, and I had been in ICU the month before. I had an appointment in Chapel Hill with a specialist and I remember Dad and Vicky making me a pallet of a blow up mattress, blankets, and pillows in the back of the Yukon because I couldn't even sit up. I felt like a dream...it was surprisingly peaceful and comfortable. My parents used to drive me around when I was little to get me to sleep, and it still works for me as an adult if I am a passenger. So, between the motion, the cold air in the car, the cuddly blankets and being tucking in on the air mattress I was more at peace than I had been in awhile. ANYWAY, getting back to last summer. I called and made an appointment with the orthopedic doctor to see me. They checked me out, did some X-Ray's and gave me a brace for my leg. He said from what he could tell my leg looked okay, but the radiologist really needed to see it before he could confirm that. So I put my brace on and went home.
The next afternoon I was laying in bed watching TV and I remember distinctly getting this phone call from the doctor. I knew at once something was not right because the actual doctor was calling, not just the nurse. He told me there was a shadow on the X-Ray that he has not seen because it was right at the edge of the film, If they had moved my 1/2 and inch it wouldn't have been there. He said he didn't think it was anything to be too concerned about, but it needed to be checked out ASAP. To me that didn't sound like something to not be too concerned about. But, taking his word I didn't worry too much.
My parents must have been worried because both of them came to the appointment, which was unusual. My appointment was at the Orthopedic Oncologist in the Baptist Cancer Center. Another red flag right? Too bad I didn't acknowledge this too much. I was still in too much pain. I was the last appointment of the day and on a Friday, since I was a walk in. We got back there and I was examined. This is where it starts to get a little blurry for a few days....They thought it was an abscess and they could quickly drain it and send me home, well when they did they realized it was not an abscess, but cancer. I was admitted to Baptist, and my whole family was there and I was so drugged I had no idea what was going on. I remember thinking that I was not really surprised I had cancer....for some reason, even though I was tested for cancer multiple times and nothing ever showed up, I always thought I had it. What I was surprised about was when my doctor came and told my family I had Ewing's Sarcoma. He told us there was not much he could do. If they operated and it was in the bone it would spread to the rest of my body. They best they could offer was to amputate my leg. I was terrified. I remember that was when I really broke down. I have no clue how my parents got through that moment without losing it. The doctor then told us that since it was Friday night the lab was not fully equipped to do an in depth study of the biopsy, but from sight it looked like sarcoma. He said on Sat. we would have a better idea of what we were looking at. The next thing I fully remember was him coming back on Sat. with this big goofy smile. He was so excited, he said, "It is NOT Sarcoma! It's Diffuse Large B-Cell Lymphoma! This is much more treatable, although it is extremely aggressive." "Thank you God", was all I could think.
At this point I was moved to the Oncology floor in the hospital. I was too prepare for surgery on July 4th, and would have my first chemo treatment the day after. As much as I hated my diagnoses, it was a lot better than it could have been, and I was in it for the long haul.
Tuesday, August 3, 2010
Monday, May 17, 2010
May 2009
After my trip to Mayo Clinic in April I was feeling pretty discouraged about everything. I thought we would finally get some definite answers about what was going on with my health. Apparently not. I was just to keep seeing my doctors, and keep on with my previous health plan. Finish chemo. Take meds. Live life as much as I could. The treatments were getting easier, but having so many treatments and meds and seeing such little improvement is very frustrating. I figured I was at least stable at that point and tried to start living my life again.
In mid May I started having some problems with balance, but didn't think too much of it. I am pretty clumsy. Then Cheston and I went to Melissa and Andy's house for dinner and I started feeling really bad. The next day it was obvious something was extremely wrong. Along with balance problems I had vision problems, trouble swallowing, the right side of my face was slack, almost like I had a stroke. I could not touch my nose with my finger or perform simple neurological tests. I was taken to the ED, again, and another MRI was done. I had another brain lesion and I was immediately admitted to the hospital for extended testing. The doctors thought they may be able to find something while I had an active brain lesion.
Of course I saw all of my "normal" doctors, but I also was to see THE leading neurologist in MS (multiple sclerosis). The doctors wanted to explore other options for my problems other than what we figured was already going on. Everyone, including my doctors, were getting very frustrated that I was always so sick and miserable. I was, and am, fortunate enough to have doctors that treat me as if I am their own. (That may come with my age or all the health problems I have had at my age. Not sure. Or maybe they happen to all be that compassionate.)After many tests including another spinal tap, dopplers for blood clots, scans, brain function tests and being hooked up to machines that tested my responses to stimuli Dr. J. thought he may have found something. My knee and thigh were also still bothering me, so that too was being checked out.
I was on mega doses of steroids once again, as well as other meds to get the brain lesion under control. There were also many problems accessing my veins, nothing new. I let a lot of students practice putting in IVs. I was bored, what can I say?
About mid was through my stay Dr. J., my neurologist, confirmed he felt I had MS. Apparently the synapses were not connecting like they should in my brain, and were causing the problems with motor functions. I said he "felt" I had MS because there is NO definite test to confirm it. It is a diagnosis made by considering all the contributing factors, and ruling out other diagnosis that CAN be proved. Now, why not do a biopsy, right? That was one of my first questions. The spot where my lesions are is such a small area (the brain stem) that no one will even consider going anywhere near it unless it is life or death. I tend to agree with this. I am willing to risk not knowing to losing fine motor skills. After he told us what he thought was going on he said he wanted to run a few more tests before I left the hospital to confirm what he thought was going on. I was to hear these results at my first doctor appointment with him after being released from the hospital.
So, I was coming to grips with the idea of having MS, I started doing some research and I started preparing myself and my family for this idea and for what life would mean for me in the present and future. We were hopeful because we were told there were many breakthroughs happening in the MS field. I was scared about the thought of being in a wheelchair at an early age and not being able to work and possibly have children. Not having children is still something that stays on my mind and lays heavy on my heart. I was very upset about it, and it wasn't something I wanted to share with anyone at the time. It was too much to process and explain. The thought of having to answer so many question from people was overwhelming.
On this visit I was asked by a doctor to present my case to a class of interns and a panel of other doctors. I spent one afternoon, in my hospital garb, no shower, barely walking and barely talking clearly presenting my case to about 40 interns. They were to use my information and ask questions to learn more info, learn how to question a patient, etc. This was not the first time I had dealt with interns wanting to use me for case study or a regular doctor wanting to use my case to teach. At that point I figured the more eyes on my medical history the better off I would be. Unfortunately nothing was ever found that we didn't already know.
I had a few visitors besides my family, but as I started feeling better I obviously started getting bored. At that point I was to walk around the halls as much as I could in oreder to get strength back. My Dad walked with me a lot so he could help me if needed. As it turned out I did need him one night. We were walking and my ankle turned. I hurt my knee and caused the pain in my leg to become worse. At this point we also had a family vacation planned, which I was greatly looking forward to. I was so ready to get out of town for a few days, simply because I was tired of being in the hospital and even in Winston. I felt like if I could get away maybe I could get away from my health issues for awhile.
In mid May I started having some problems with balance, but didn't think too much of it. I am pretty clumsy. Then Cheston and I went to Melissa and Andy's house for dinner and I started feeling really bad. The next day it was obvious something was extremely wrong. Along with balance problems I had vision problems, trouble swallowing, the right side of my face was slack, almost like I had a stroke. I could not touch my nose with my finger or perform simple neurological tests. I was taken to the ED, again, and another MRI was done. I had another brain lesion and I was immediately admitted to the hospital for extended testing. The doctors thought they may be able to find something while I had an active brain lesion.
Of course I saw all of my "normal" doctors, but I also was to see THE leading neurologist in MS (multiple sclerosis). The doctors wanted to explore other options for my problems other than what we figured was already going on. Everyone, including my doctors, were getting very frustrated that I was always so sick and miserable. I was, and am, fortunate enough to have doctors that treat me as if I am their own. (That may come with my age or all the health problems I have had at my age. Not sure. Or maybe they happen to all be that compassionate.)After many tests including another spinal tap, dopplers for blood clots, scans, brain function tests and being hooked up to machines that tested my responses to stimuli Dr. J. thought he may have found something. My knee and thigh were also still bothering me, so that too was being checked out.
I was on mega doses of steroids once again, as well as other meds to get the brain lesion under control. There were also many problems accessing my veins, nothing new. I let a lot of students practice putting in IVs. I was bored, what can I say?
About mid was through my stay Dr. J., my neurologist, confirmed he felt I had MS. Apparently the synapses were not connecting like they should in my brain, and were causing the problems with motor functions. I said he "felt" I had MS because there is NO definite test to confirm it. It is a diagnosis made by considering all the contributing factors, and ruling out other diagnosis that CAN be proved. Now, why not do a biopsy, right? That was one of my first questions. The spot where my lesions are is such a small area (the brain stem) that no one will even consider going anywhere near it unless it is life or death. I tend to agree with this. I am willing to risk not knowing to losing fine motor skills. After he told us what he thought was going on he said he wanted to run a few more tests before I left the hospital to confirm what he thought was going on. I was to hear these results at my first doctor appointment with him after being released from the hospital.
So, I was coming to grips with the idea of having MS, I started doing some research and I started preparing myself and my family for this idea and for what life would mean for me in the present and future. We were hopeful because we were told there were many breakthroughs happening in the MS field. I was scared about the thought of being in a wheelchair at an early age and not being able to work and possibly have children. Not having children is still something that stays on my mind and lays heavy on my heart. I was very upset about it, and it wasn't something I wanted to share with anyone at the time. It was too much to process and explain. The thought of having to answer so many question from people was overwhelming.
On this visit I was asked by a doctor to present my case to a class of interns and a panel of other doctors. I spent one afternoon, in my hospital garb, no shower, barely walking and barely talking clearly presenting my case to about 40 interns. They were to use my information and ask questions to learn more info, learn how to question a patient, etc. This was not the first time I had dealt with interns wanting to use me for case study or a regular doctor wanting to use my case to teach. At that point I figured the more eyes on my medical history the better off I would be. Unfortunately nothing was ever found that we didn't already know.
I had a few visitors besides my family, but as I started feeling better I obviously started getting bored. At that point I was to walk around the halls as much as I could in oreder to get strength back. My Dad walked with me a lot so he could help me if needed. As it turned out I did need him one night. We were walking and my ankle turned. I hurt my knee and caused the pain in my leg to become worse. At this point we also had a family vacation planned, which I was greatly looking forward to. I was so ready to get out of town for a few days, simply because I was tired of being in the hospital and even in Winston. I felt like if I could get away maybe I could get away from my health issues for awhile.
Saturday, May 15, 2010
Now What? 2010
Okay, so those were all my blogs from my care page. Now the question is what to do next? I am torn between trying to update a year of my medical history and just not worrying about it. However, I guess if I am going to try to do an outline for a possible book then I should update. That, and I am anal as hell about wanting to update everything to the present. But the last year has been such a blur I don't know how much I remember. I remember the medical stuff of course, but the emotional? I wish I kept up with it. Argh. So I guess I will try and update the past year. Hang in there with me while I update. It may take a few different blogs. Have a good evening!
Mayo-Day Three 2008
Mayo Clinic-Day 3
Posted Apr 8, 2009 6:59pm
I just spent 30 minutes typing a post and then I lost it, so here it goes again. It was a short day today, we started off at the hemotologist where we repeated my medical history for the 100th time. We also learned that my lupis antibody blood test was positive again, which means I DO HAVE antiphosphlipid antibody syndrome (APLAS). I got a bunch of literature and we talked about the fact I have to be on coumadin the rest of my life and that I need to learn to manage my blood as well as I possibbly can. This means investing in a blood testing kit, (kind of like a diabetic testing kit), which is VERY expensive. But, hopefully insurance will cover it, but they rarely do. He was very dissapointed that I did not have on a medic alert braclet, so I guess when I get home I will look for a nice one that I can wear all the time. I figure I might invest in one since I have to wear it all the time.
When we left we went to some shops, I found a really cute one called Tangerine, and I got some really good creative ideas for some art projects. We then ate lunch at cute little pub. It was good and greasy. Then we took a nap.
I then had to be back at the Clinic for a bone density scan. It was quick and painless. It was just to check how well my bones are holding up under all the medications.
We went to some antique shops after that and I got a tablecloth. There were some other things I liked, but I had no way to get them home. Then we came back here to hang out for the night. I am in some pain, so we are taking it easy.
Tomorrow we go to a hospital affliated with Mayo Clinic so I can get an MRI of my abdomen. I am having it done under sedation, which is good with me because they make me so fidgety. We then go back to see my "quarterback" so we can talk about all of my diagnosis. So far we KNOW that I have APLAS and most likely Fibromyalgia. They are still looking into the vasculitis. I think it would be pretty ironic if I have it, because the doctors back home kept saying it was very rare to have more than one thing going on. well, it seems that I might, and knowing how complicated I am I would have the rare option. I will let you all know when I know.
Well, this page isn't as good as the one a wrote before, but it will do. I hope everone is doing well. Trentt and Amy, I know Ryder has the flu, I hope the rest of you don't get it. Keep praying for my Pop please, and I will see everyone soon. I get home Sat. night.
Love,
Kinsley
Posted Apr 8, 2009 6:59pm
I just spent 30 minutes typing a post and then I lost it, so here it goes again. It was a short day today, we started off at the hemotologist where we repeated my medical history for the 100th time. We also learned that my lupis antibody blood test was positive again, which means I DO HAVE antiphosphlipid antibody syndrome (APLAS). I got a bunch of literature and we talked about the fact I have to be on coumadin the rest of my life and that I need to learn to manage my blood as well as I possibbly can. This means investing in a blood testing kit, (kind of like a diabetic testing kit), which is VERY expensive. But, hopefully insurance will cover it, but they rarely do. He was very dissapointed that I did not have on a medic alert braclet, so I guess when I get home I will look for a nice one that I can wear all the time. I figure I might invest in one since I have to wear it all the time.
When we left we went to some shops, I found a really cute one called Tangerine, and I got some really good creative ideas for some art projects. We then ate lunch at cute little pub. It was good and greasy. Then we took a nap.
I then had to be back at the Clinic for a bone density scan. It was quick and painless. It was just to check how well my bones are holding up under all the medications.
We went to some antique shops after that and I got a tablecloth. There were some other things I liked, but I had no way to get them home. Then we came back here to hang out for the night. I am in some pain, so we are taking it easy.
Tomorrow we go to a hospital affliated with Mayo Clinic so I can get an MRI of my abdomen. I am having it done under sedation, which is good with me because they make me so fidgety. We then go back to see my "quarterback" so we can talk about all of my diagnosis. So far we KNOW that I have APLAS and most likely Fibromyalgia. They are still looking into the vasculitis. I think it would be pretty ironic if I have it, because the doctors back home kept saying it was very rare to have more than one thing going on. well, it seems that I might, and knowing how complicated I am I would have the rare option. I will let you all know when I know.
Well, this page isn't as good as the one a wrote before, but it will do. I hope everone is doing well. Trentt and Amy, I know Ryder has the flu, I hope the rest of you don't get it. Keep praying for my Pop please, and I will see everyone soon. I get home Sat. night.
Love,
Kinsley
Mayo-Day Two 2008
Mayo-Day 2
Posted Apr 7, 2009 8:59pm
Well, this will be quick tonight, as I am extremely exhausted. I had a follow up this morning with my "quarterback", Dr. Petersen. We talked about lab results, nothing major there...we pretty much expected what we heard, although we have not heard back from the Antiphospholipid Antibody Syndrome (APLAS) test, the rheumatologist expects it to be positive. That doesn't mean much either because it has to be positive a certain number of times in a certain number of months. The docs up here are still scrounging around in the hospital records and notes as well as waiting for more blood work and test results to come in. I have a Bone Density Screening and MRI and another two doctors appointments the next two days.
There were two somewhat alarming things that I learned today from Dr. Y.
#1 After he examined me and felt my joints and muscles around them he has decided there is a distinct possibility that I have Fibromyalgia. He said when people have prolonged hospitalizations and especially those who have spent time in ICU, (of course both apply to me)at some point something happens in the way certain things are firing in brain, and cause pain. This could explain all of the pain I have been having that does not seem to be related to other problems. I am constantly achy and my joints hurt. So that COULD be an answer to that. NOT like I need another diagnosis, but if it is, it is.
#2 Dr. Y. is not all that sure that chemo was the answer as a treatment to whatever I have. But, having said that he is not sure what he would have done either. (I think this is because they are still gathering info.) It scares me and somewhat upsets me to think I am going through chemo for no reason, but if it has helped in any way to heal my brain lesions then it was a good choice.
On a lighter note, Mom and I got to explore Mayo some more. It is really neat, we went to more shops and a museum. There is art all over the place here. When we left we walked back to the hotel outside. I was SO tired, but I needed some fresh air. We went to a jewelery store and got a Pandora charm to commemorate our trip to the Clinic. We also went into the coolest store. It is called Tangerine, and I plan on going again tomorrow. We are also going to an underground antique mall tomorrow that is right across the street from us. I also plan to take some pictures the next three days. I have a lot of really neat ideas and things to take pictures of.
I hope everyone is doing well. We are okay, have good mother/daughter time and learning some things about me. If anyone has questions feel free to ask. Please keep Pop in our prayers, he is not doing so well. He misses his other half, and is getting forgetful.
Love you all,
Kinsley
Posted Apr 7, 2009 8:59pm
Well, this will be quick tonight, as I am extremely exhausted. I had a follow up this morning with my "quarterback", Dr. Petersen. We talked about lab results, nothing major there...we pretty much expected what we heard, although we have not heard back from the Antiphospholipid Antibody Syndrome (APLAS) test, the rheumatologist expects it to be positive. That doesn't mean much either because it has to be positive a certain number of times in a certain number of months. The docs up here are still scrounging around in the hospital records and notes as well as waiting for more blood work and test results to come in. I have a Bone Density Screening and MRI and another two doctors appointments the next two days.
There were two somewhat alarming things that I learned today from Dr. Y.
#1 After he examined me and felt my joints and muscles around them he has decided there is a distinct possibility that I have Fibromyalgia. He said when people have prolonged hospitalizations and especially those who have spent time in ICU, (of course both apply to me)at some point something happens in the way certain things are firing in brain, and cause pain. This could explain all of the pain I have been having that does not seem to be related to other problems. I am constantly achy and my joints hurt. So that COULD be an answer to that. NOT like I need another diagnosis, but if it is, it is.
#2 Dr. Y. is not all that sure that chemo was the answer as a treatment to whatever I have. But, having said that he is not sure what he would have done either. (I think this is because they are still gathering info.) It scares me and somewhat upsets me to think I am going through chemo for no reason, but if it has helped in any way to heal my brain lesions then it was a good choice.
On a lighter note, Mom and I got to explore Mayo some more. It is really neat, we went to more shops and a museum. There is art all over the place here. When we left we walked back to the hotel outside. I was SO tired, but I needed some fresh air. We went to a jewelery store and got a Pandora charm to commemorate our trip to the Clinic. We also went into the coolest store. It is called Tangerine, and I plan on going again tomorrow. We are also going to an underground antique mall tomorrow that is right across the street from us. I also plan to take some pictures the next three days. I have a lot of really neat ideas and things to take pictures of.
I hope everyone is doing well. We are okay, have good mother/daughter time and learning some things about me. If anyone has questions feel free to ask. Please keep Pop in our prayers, he is not doing so well. He misses his other half, and is getting forgetful.
Love you all,
Kinsley
Mayo-Day One 2008
Mayo-Day 1
Posted Apr 6, 2009 9:17pm
I am going to backtrack a moment...we had a great flight yesterday, I ended up have a whole row of seats to myself on both flights. Apparently not many people go to Rochester, MN. On the second flight there were only 8 people or so. We had a shuttle to the hotel, and Mayo Clinic paid for it. The hotel room is very nice:) Thank you Suzanne for setting up the flight and rooms. When we got here, at 3ish, I slept until 8. We ate something and then I slept until this morning at 8.
I had to fast last night, so a woke up and we took a shuttle to Mayo, which we can see out of our back door, and is attached by sky way, but quite a walk. The Mayo Clinic itself is amazing. There is so much artwork on the walls and so many shops to look at. It is like our cab driver said, "it's a city under a city." So anyway, I filled out about eight pages of paperwork and then saw Dr. Petersen. He is a really nice man. He started at the beginning and asked me tons of questions. We reviewed images and talked about the order that things happened in, as well as how long certain issues had been going on, etc. He said that he was my new "quarterback" at Mayo, as Dr. Burkart is in Winston. He is coordinating ever thing as far as talking to different specialties and such. He asked me why I was here, and I said #1 to verify a diagnosis, #2 TO GET MY LIFE BACK! He agreed, and said he try to help me get it back.
So, after we finished there we waited about 30 minutes and they worked up an itinerary for the rest of my stay. It is amazing they can get one together so quickly! Not only that, it is detailed and they tell you exactly what you need to know as far as fasting and such. At some point I will have a Doppler to check for blood clots in my leg, as well as a bone density scan to make sure the chemo and prednisone are not affecting my bones too badly.
Day One (Today): I saw Dr. Petersen, had to pee in a cup, and had 18 VIALS of blood drawn. (Talk about light-headed)
Day 2: 11:00 am- Dr. Petersen again
1:45- Dr. Ytterberg- Rheumatology
Day 3: 8:30am- Hematology, Coagulation Lab/Consultation
Day 4: 1:30pm St. Marys Hospital for abdominal MRI (never had one of those)
Day 5: As of now we have no plans, but I am sure that will change as we get results of tests back.
We ate at an Italian place called Victoria's. It was SO YUMMY! I have pasta primavera, after having that much blood drawn I had to yet something good. We then looked at some of the shops underground as we walked back to the hotel through the sky way. It is really neat the way things are set up.
The weather is great, no snow. It was 36ish today, and I LOVED it. It was the first time in awhile that I have not sweat like crazy all day. I only had one episode of it today vs. 20.
I have heard from a lot of people that Nana's viewing and service went well and there were a lot of people there. I am so glad so many people were able to celebrate this wonderful woman's life. Cheston, thank you for going to everything in my place. NANA I LOVE YOU and hope I am where I should be.
My mom and I are getting ready to eat a little frozen pizza and popcorn and watch TV, so I am going to go. I hope everyone is doing well!
Much Love,
Kinsley
Posted Apr 6, 2009 9:17pm
I am going to backtrack a moment...we had a great flight yesterday, I ended up have a whole row of seats to myself on both flights. Apparently not many people go to Rochester, MN. On the second flight there were only 8 people or so. We had a shuttle to the hotel, and Mayo Clinic paid for it. The hotel room is very nice:) Thank you Suzanne for setting up the flight and rooms. When we got here, at 3ish, I slept until 8. We ate something and then I slept until this morning at 8.
I had to fast last night, so a woke up and we took a shuttle to Mayo, which we can see out of our back door, and is attached by sky way, but quite a walk. The Mayo Clinic itself is amazing. There is so much artwork on the walls and so many shops to look at. It is like our cab driver said, "it's a city under a city." So anyway, I filled out about eight pages of paperwork and then saw Dr. Petersen. He is a really nice man. He started at the beginning and asked me tons of questions. We reviewed images and talked about the order that things happened in, as well as how long certain issues had been going on, etc. He said that he was my new "quarterback" at Mayo, as Dr. Burkart is in Winston. He is coordinating ever thing as far as talking to different specialties and such. He asked me why I was here, and I said #1 to verify a diagnosis, #2 TO GET MY LIFE BACK! He agreed, and said he try to help me get it back.
So, after we finished there we waited about 30 minutes and they worked up an itinerary for the rest of my stay. It is amazing they can get one together so quickly! Not only that, it is detailed and they tell you exactly what you need to know as far as fasting and such. At some point I will have a Doppler to check for blood clots in my leg, as well as a bone density scan to make sure the chemo and prednisone are not affecting my bones too badly.
Day One (Today): I saw Dr. Petersen, had to pee in a cup, and had 18 VIALS of blood drawn. (Talk about light-headed)
Day 2: 11:00 am- Dr. Petersen again
1:45- Dr. Ytterberg- Rheumatology
Day 3: 8:30am- Hematology, Coagulation Lab/Consultation
Day 4: 1:30pm St. Marys Hospital for abdominal MRI (never had one of those)
Day 5: As of now we have no plans, but I am sure that will change as we get results of tests back.
We ate at an Italian place called Victoria's. It was SO YUMMY! I have pasta primavera, after having that much blood drawn I had to yet something good. We then looked at some of the shops underground as we walked back to the hotel through the sky way. It is really neat the way things are set up.
The weather is great, no snow. It was 36ish today, and I LOVED it. It was the first time in awhile that I have not sweat like crazy all day. I only had one episode of it today vs. 20.
I have heard from a lot of people that Nana's viewing and service went well and there were a lot of people there. I am so glad so many people were able to celebrate this wonderful woman's life. Cheston, thank you for going to everything in my place. NANA I LOVE YOU and hope I am where I should be.
My mom and I are getting ready to eat a little frozen pizza and popcorn and watch TV, so I am going to go. I hope everyone is doing well!
Much Love,
Kinsley
Mayo Clinic...FINALLY! 2008
Mayo Clinic..FINALLY!
Posted Apr 5, 2009 1:13pm
Well, Mom and I made it to the Mayo Clinc in MN. The plane ride went well. I have been having a lot of pain in my right tigh. We are hoping it is not another clot. We have a nice room and I have my first appointment in the morning at 9. I will write more later, but at the moment I am going to take a nap.
Just so everyone is aware, my Nana passed away on Thursday night. The veiwing is at Voglers in Clemmons from 6-8, and the service is there too at 1:00 tomorrow afternoon. The graveside is in Farmington after that. As you can imagine, I am very upset about not being able to be there. Please keep my family, especially Pop, in your prayers. He is missing his wife of 68 years very badly.
More later.
Kinsley
Posted Apr 5, 2009 1:13pm
Well, Mom and I made it to the Mayo Clinc in MN. The plane ride went well. I have been having a lot of pain in my right tigh. We are hoping it is not another clot. We have a nice room and I have my first appointment in the morning at 9. I will write more later, but at the moment I am going to take a nap.
Just so everyone is aware, my Nana passed away on Thursday night. The veiwing is at Voglers in Clemmons from 6-8, and the service is there too at 1:00 tomorrow afternoon. The graveside is in Farmington after that. As you can imagine, I am very upset about not being able to be there. Please keep my family, especially Pop, in your prayers. He is missing his wife of 68 years very badly.
More later.
Kinsley
Haircut, Birthday Party, Treatment and Deflating 2008
Haircut, Birthday Party, Treatment and Deflating
Posted Mar 25, 2009 4:17pm
Once again, it has been awhile since I have updated the page. Since the last time I wrote I got my results back on my MRI, and things are looking better! The doctors said they consider this a "small victory" (I consider it a pretty significant one myself). This means my brain lesions are looking better. My vision is back to normal, I can swallow normally, and my balance is better. I am pretty clumsy, so better for me. I was very worried about the prospect of my vision not coming back. That scared me a lot. The thought of not being able to drive, being dizzy all the time, and stumbling around was not very good one. Thank the Lord for that prayer being answered. As far as my back goes, the MRI didn't show any new fractures, and my verteabraplasty spot is healing well. That, too, is feeling much better. I can still tell when I do too much or sit in the same position too long it flares up, but nothing like before. Another prayer answered.
I went to the neurologist, and he confirmed that my brain looks better. He said by looking at the recent MRI and the older one that I would have my good and bad days. The lesion can still cause some blurry vision and headaches, which I have experienced a few times.
I went back to the rhuematologist also, and we decided on three more rounds of chemo, so I have two left. Each round gets increasingly worse. I am worn out, exhausted, have the cold sweats, and feel like I am going to puke for a little bit longer each round. I have been taking nausea meds and sleeping through the worst of it. They started me on a new medication that most people that have autoimmune diseases are on. It is supposed to help with inflammation, so hopefully my joints will feel better. They are deacreasing my prednisone WAHOO! I am feeling a little less bloated, and that makes me feel lots betting in its self.
I am still battling the Warfarin war. She can not figure out why I am having such a problem getting stable.
My nephrologist,(kidney doctor), is getting my in a Mayo Clinic, so we are waiting to gear back from them for an appointment. The doctor there is a specialist in vasculitis involving the kidneys, so hopefully he can confirm or rule out a diagnosis.
Medically, I think that is about it. Last weekend we had Trentt, Amy, E.C., Ryder, Mom, Debra, Dad, Vicky, DeeDee, Charlie and Pop over for a cookout to celebrate Ryder's birthday. We had a great time and it was so good to see everyone. It was very hard to see Pop over here without Nana. Please still keep them in your prayers! Being around Trentt, Amy and the boys makes me really miss living in Wilmington. I hate not being able to see them more often. I also miss the town of Wilmington. I felt very at home there, but I am in the right place for now. Other than that not much else has been going on with me. I don't really go out because I am afraid of getting sick and having to deal with that on top of everything else. I am trying to do a few art projects and I am reading a lot still. My mom took me to get my hair cut, and I really like having my hair short. It helps make it look thicker, and I like that since I have lost some. I hope everyone is doing well!
Love,
Kinsley
Posted Mar 25, 2009 4:17pm
Once again, it has been awhile since I have updated the page. Since the last time I wrote I got my results back on my MRI, and things are looking better! The doctors said they consider this a "small victory" (I consider it a pretty significant one myself). This means my brain lesions are looking better. My vision is back to normal, I can swallow normally, and my balance is better. I am pretty clumsy, so better for me. I was very worried about the prospect of my vision not coming back. That scared me a lot. The thought of not being able to drive, being dizzy all the time, and stumbling around was not very good one. Thank the Lord for that prayer being answered. As far as my back goes, the MRI didn't show any new fractures, and my verteabraplasty spot is healing well. That, too, is feeling much better. I can still tell when I do too much or sit in the same position too long it flares up, but nothing like before. Another prayer answered.
I went to the neurologist, and he confirmed that my brain looks better. He said by looking at the recent MRI and the older one that I would have my good and bad days. The lesion can still cause some blurry vision and headaches, which I have experienced a few times.
I went back to the rhuematologist also, and we decided on three more rounds of chemo, so I have two left. Each round gets increasingly worse. I am worn out, exhausted, have the cold sweats, and feel like I am going to puke for a little bit longer each round. I have been taking nausea meds and sleeping through the worst of it. They started me on a new medication that most people that have autoimmune diseases are on. It is supposed to help with inflammation, so hopefully my joints will feel better. They are deacreasing my prednisone WAHOO! I am feeling a little less bloated, and that makes me feel lots betting in its self.
I am still battling the Warfarin war. She can not figure out why I am having such a problem getting stable.
My nephrologist,(kidney doctor), is getting my in a Mayo Clinic, so we are waiting to gear back from them for an appointment. The doctor there is a specialist in vasculitis involving the kidneys, so hopefully he can confirm or rule out a diagnosis.
Medically, I think that is about it. Last weekend we had Trentt, Amy, E.C., Ryder, Mom, Debra, Dad, Vicky, DeeDee, Charlie and Pop over for a cookout to celebrate Ryder's birthday. We had a great time and it was so good to see everyone. It was very hard to see Pop over here without Nana. Please still keep them in your prayers! Being around Trentt, Amy and the boys makes me really miss living in Wilmington. I hate not being able to see them more often. I also miss the town of Wilmington. I felt very at home there, but I am in the right place for now. Other than that not much else has been going on with me. I don't really go out because I am afraid of getting sick and having to deal with that on top of everything else. I am trying to do a few art projects and I am reading a lot still. My mom took me to get my hair cut, and I really like having my hair short. It helps make it look thicker, and I like that since I have lost some. I hope everyone is doing well!
Love,
Kinsley
Trying to Motivate 2008
Trying to Motivate...
Posted Mar 5, 2009 1:23pm
Wow, it has been a really long time since I have updated my care page. I am sorry it has been so long to those that have been following my health by this page alone. I kept thinking, "after this next appointment or this next treatment I will update my page. There is no point until I have some more answers." But, I have realized there are no answers to anything at the moment. Nothing has really changed since December. No one is any more certain about a diagnosis or lack there of.
I had what was supposed to be my last treatment of chemo on February 18th, but at the doctors appointment before chemo they told Cheston and me they were not feeling too positive about only giving me those three treatments. Therefore, I will be having chemo again on the 18th of this month. I told them it was fine, I will have as many treatments as they deem fit, I just want to stop being sick. This last treatment was a lot harder than the previous ones. They upped the dose and I could definitely tell the difference. I felt a lot worse the next week almost. My fabulous friend Rachel took time off of work and a day off of school to come and stay with me Thursday night through Sunday. It was nice to have her here, although I slept the majority of the time. I have to say I can not seem to get enough sleep these days. I seem to have my days and nights mixed up though. I stay up late and sleep a lot during the day. Then I have those days where I sleep all night and all day. After my last treatment (it was a Wednesday) I slept from Saturday night until Tuesday afternoon. I guess that is the nature of the beast. (Or treatment.)
I am still battling the Warfarin war. (haha get it? WARfarin WAR. I'm a dork.) I go to the heart clinic every week thanks to my wonderful Aunt Deb who has to take me. I swing from 5.6 down to 1.1 in a week. No one is sure why I am so sensitive to it. So that is a constant battle.
I had an MRI this past week. I went on Thursday to have a 2 hour MRI of my brain and spine, and they had to reschedule it because it was ordered with contrast and I am not allowed to have contrast unless I have dialysis afterward to get rid of it. So, I went back on Sunday to have it done because Dr. Burkart said ABSOLUTELY NO CONTRAST. MY 2 hour MRI ended up being an hour and a half. Well, I get a call the next day (which was Monday, the snow day:) and I had to go back last night (Wednesday) to get some more pictures done. We do not have the results yet, and as soon as I know something I will post it. I am going to add some pictures of the dogs from the snow day, take a look at how much fun they had in the snow. They absolutely loved it.
Enough about the medical aspect. I know I said I sleep A LOT, and I mean A LOT, but I also lay in bed and watch quite a bit of TV. HGTV is my new favorite channel. It makes me feel like I should be doing something around here though. Dad and Vicky came into town a month or so ago and redecorated three rooms in our house. It looks fabulous. I love it. We get so many compliments on it. There are so many other little things that need to be done around here, but I start on it and I think, "You know, I don't want to do this anymore." Then I stop and go back to bed. I wish I was motivated enough to do some stuff I want to get done. But I am not. And that is okay I have learned. It was a very hard lesson for me to learn. It's very hard for me to do nothing. I always feel like I need to be productive.
I have decided I am going to start a book club though. I have been working on getting that together. I am really excited about it. If anyone wants to join let me know. I will be sending out evites and info about it soon. I have been reading so much lately and I hate not being able to talk about it with anyone, so it has inspired me to get a book club together.
Mentally I think I am feeling better. I have been getting a little cabin fever, and I feel like going to school and getting some things packed up in my room. There is a new middle school opening and I am moving to that school to teach only 8th grade. I am really excited about it. I figure if I am thinking about work I must be feeling better. Before I couldn't think of anything but how bad I felt.
On a heavier note, a friend of mine from high school had a baby last week, and he was born with a rare skin disease. He is in the NICU at Baptist. I wanted to let all you prayer warriors know so you could put their family on your prayer list. His name is Jonah. I am adding the link to their story in here because it is a very touching one. Patrice and Matt lost their first baby at 37 weeks and this baby boy is very sick. So far there are over 2,000 people across the country praying for this amazing baby boy. Here is the link, please read and pray. http://patriceandmattwilliams.blogspot.com
Also, please continue to pray for my grandparents. I love them so much, and I hate to see them in the condition they are in. Nana is finally settled in a nursing home, but she is not liking it very much. Pop, bless his heart, goes to see her every day. He is not in very good condition either, but he is determined to see the love of his life every day.
I think this is it for now. Thanks again for all the prayers and concern!
Much Love,
Kinsley
Posted Mar 5, 2009 1:23pm
Wow, it has been a really long time since I have updated my care page. I am sorry it has been so long to those that have been following my health by this page alone. I kept thinking, "after this next appointment or this next treatment I will update my page. There is no point until I have some more answers." But, I have realized there are no answers to anything at the moment. Nothing has really changed since December. No one is any more certain about a diagnosis or lack there of.
I had what was supposed to be my last treatment of chemo on February 18th, but at the doctors appointment before chemo they told Cheston and me they were not feeling too positive about only giving me those three treatments. Therefore, I will be having chemo again on the 18th of this month. I told them it was fine, I will have as many treatments as they deem fit, I just want to stop being sick. This last treatment was a lot harder than the previous ones. They upped the dose and I could definitely tell the difference. I felt a lot worse the next week almost. My fabulous friend Rachel took time off of work and a day off of school to come and stay with me Thursday night through Sunday. It was nice to have her here, although I slept the majority of the time. I have to say I can not seem to get enough sleep these days. I seem to have my days and nights mixed up though. I stay up late and sleep a lot during the day. Then I have those days where I sleep all night and all day. After my last treatment (it was a Wednesday) I slept from Saturday night until Tuesday afternoon. I guess that is the nature of the beast. (Or treatment.)
I am still battling the Warfarin war. (haha get it? WARfarin WAR. I'm a dork.) I go to the heart clinic every week thanks to my wonderful Aunt Deb who has to take me. I swing from 5.6 down to 1.1 in a week. No one is sure why I am so sensitive to it. So that is a constant battle.
I had an MRI this past week. I went on Thursday to have a 2 hour MRI of my brain and spine, and they had to reschedule it because it was ordered with contrast and I am not allowed to have contrast unless I have dialysis afterward to get rid of it. So, I went back on Sunday to have it done because Dr. Burkart said ABSOLUTELY NO CONTRAST. MY 2 hour MRI ended up being an hour and a half. Well, I get a call the next day (which was Monday, the snow day:) and I had to go back last night (Wednesday) to get some more pictures done. We do not have the results yet, and as soon as I know something I will post it. I am going to add some pictures of the dogs from the snow day, take a look at how much fun they had in the snow. They absolutely loved it.
Enough about the medical aspect. I know I said I sleep A LOT, and I mean A LOT, but I also lay in bed and watch quite a bit of TV. HGTV is my new favorite channel. It makes me feel like I should be doing something around here though. Dad and Vicky came into town a month or so ago and redecorated three rooms in our house. It looks fabulous. I love it. We get so many compliments on it. There are so many other little things that need to be done around here, but I start on it and I think, "You know, I don't want to do this anymore." Then I stop and go back to bed. I wish I was motivated enough to do some stuff I want to get done. But I am not. And that is okay I have learned. It was a very hard lesson for me to learn. It's very hard for me to do nothing. I always feel like I need to be productive.
I have decided I am going to start a book club though. I have been working on getting that together. I am really excited about it. If anyone wants to join let me know. I will be sending out evites and info about it soon. I have been reading so much lately and I hate not being able to talk about it with anyone, so it has inspired me to get a book club together.
Mentally I think I am feeling better. I have been getting a little cabin fever, and I feel like going to school and getting some things packed up in my room. There is a new middle school opening and I am moving to that school to teach only 8th grade. I am really excited about it. I figure if I am thinking about work I must be feeling better. Before I couldn't think of anything but how bad I felt.
On a heavier note, a friend of mine from high school had a baby last week, and he was born with a rare skin disease. He is in the NICU at Baptist. I wanted to let all you prayer warriors know so you could put their family on your prayer list. His name is Jonah. I am adding the link to their story in here because it is a very touching one. Patrice and Matt lost their first baby at 37 weeks and this baby boy is very sick. So far there are over 2,000 people across the country praying for this amazing baby boy. Here is the link, please read and pray. http://patriceandmattwilliams.blogspot.com
Also, please continue to pray for my grandparents. I love them so much, and I hate to see them in the condition they are in. Nana is finally settled in a nursing home, but she is not liking it very much. Pop, bless his heart, goes to see her every day. He is not in very good condition either, but he is determined to see the love of his life every day.
I think this is it for now. Thanks again for all the prayers and concern!
Much Love,
Kinsley
Update 2008
Update:)
Posted Jan 20, 2009 8:29pm
I am happy to say that chemo went really well on Wednesday! They got the IV in right away and I didn't get sick while I was there. Cheston went with me and hung out while I got my treatment, then I went home and slept. I woke up about 4:30 in the morning really sick, and I continued to be sick until Friday. I continue to be nauseated off and on. I have had a pretty constant headache too. But, overall it was not too bad of an experience. My Dad came up and spent Thursday and most of Friday with me, so it was nice to see him. My mom spent Friday evening with me, so we are getting quality time out of this at least.
I went to the eye specialist on Friday to have them check my vision and make sure my eyesight was coming back like it was supposed to, and there was no sign that I had even had any problems. So, that was great news. My vision is back to what it was before I got the lesions on my brain. The lesions may still be there, but they have either healed enough to make a difference or the prednisone and chemo are doing their job.
My blood work looks a lot better too, which is GREAT. I think that most of my problems at this point are side effects of medicines I am taking. I still have some left flank pain, which is attributed to my kidney, and some nerve pain in my back and leg, but I am taking less and less pain medicine and I think I just feel better a the root of things. (I hope I am right.)
Most of you know that my grandparents are sick too, please keep them in your prayers. Our family is going through a lot of stress and emotional upheaval right now, especially since we are scattered around the state (and in SC). Thank you so much for all of the prayers for me and my health and my family.
Kinsley
Posted Jan 20, 2009 8:29pm
I am happy to say that chemo went really well on Wednesday! They got the IV in right away and I didn't get sick while I was there. Cheston went with me and hung out while I got my treatment, then I went home and slept. I woke up about 4:30 in the morning really sick, and I continued to be sick until Friday. I continue to be nauseated off and on. I have had a pretty constant headache too. But, overall it was not too bad of an experience. My Dad came up and spent Thursday and most of Friday with me, so it was nice to see him. My mom spent Friday evening with me, so we are getting quality time out of this at least.
I went to the eye specialist on Friday to have them check my vision and make sure my eyesight was coming back like it was supposed to, and there was no sign that I had even had any problems. So, that was great news. My vision is back to what it was before I got the lesions on my brain. The lesions may still be there, but they have either healed enough to make a difference or the prednisone and chemo are doing their job.
My blood work looks a lot better too, which is GREAT. I think that most of my problems at this point are side effects of medicines I am taking. I still have some left flank pain, which is attributed to my kidney, and some nerve pain in my back and leg, but I am taking less and less pain medicine and I think I just feel better a the root of things. (I hope I am right.)
Most of you know that my grandparents are sick too, please keep them in your prayers. Our family is going through a lot of stress and emotional upheaval right now, especially since we are scattered around the state (and in SC). Thank you so much for all of the prayers for me and my health and my family.
Kinsley
Tight as a Tick and Ready to Explode 2008
Tight as a Tick and Ready to Explode
Posted Jan 13, 2009 4:52pm
Sorry it has been awhile since my last update. I have not felt motivated to write. I am so extremely swollen and tight from my prednisone, I can't stand it. When I smile I feel like my face is going to crack. About the only activity I can stand is laying in bed having hot flashes (they are so bad), sleeping, reading, (when I can focus)watching T.V. and spending quality time with the dogs. They like it when mommy is lazy.
I have been having extreme discomfort in my feet. They feel swollen but don't look it and when I walk I feel like they are getting ready to split open. They just burn and ache. My hands started doing that yesterday, so typing is not too comfortable, but I felt the need to update everyone on what is going on. I have also have a constant headache and achy muscles and joints. I think the combination of all of the above is causing me to by really tired and somewhat cranky. I keep thinking a hot shower or bath would really help, but for some reason the hot water in MY bathroom doesn't last long. I don't get that. Cheston's shower is fine. He said it was a user error, but it is clearly not. Something else to get fixed.
I went to the doctor on Friday and not much has changed. He, as well as my hemoc/oncologist are still undecided about what it is exactly that I have. And here I thought they figured it out. The tests they were waiting on to confirm APLAS, in their eyes, came back negative. My rheumatologist is positive it is APLAS and not vasculitis, so we are in the same place as before I went into the hospital as far as diagnosis goes. Well, not really since another possibility is on the table, but it feels the same. At least the course of treatment is the same. I am not sure I could have picked between two different ones. I am going to see a doctor in Chapel Hill that I saw once before that actually specializes and is on the nation board for APLAS. I am also going to see someone at Mayo Clinic that specializes in vasculitis in the kidneys. Hopefully that will either confirm one or the other or give us some ideas about long term treatment.
I go tomorrow for chemo again, so keep me in your thoughts. I hope things go as smoothly as they did the first time. I don't want to get sick. Cheston is going with me tomorrow, Dad is coming into town to stay on Thursday and Mom is taking off Friday. I have two more doctors appointments on Friday. I will let you know later this week how that goes.
I am trying to figure out if I can send individual people messages on here. I know people send me private ones and I would like to respond to you privately, but I can't figure out how. I know I keep asking people for reading material, thank you the ones of you that have offered suggestions. I just finished reading the Twilight series over the weekend, and I have to say that is one of the BEST series of books I have ever read. I will be re-reading them. I had heard a lot about the movie and I really didn't think I would enjoy them, but I got really, really into them. They just pulled me in and drug me away. Beautiful books I think.
I hope everyone has a good week.
kej
Posted Jan 13, 2009 4:52pm
Sorry it has been awhile since my last update. I have not felt motivated to write. I am so extremely swollen and tight from my prednisone, I can't stand it. When I smile I feel like my face is going to crack. About the only activity I can stand is laying in bed having hot flashes (they are so bad), sleeping, reading, (when I can focus)watching T.V. and spending quality time with the dogs. They like it when mommy is lazy.
I have been having extreme discomfort in my feet. They feel swollen but don't look it and when I walk I feel like they are getting ready to split open. They just burn and ache. My hands started doing that yesterday, so typing is not too comfortable, but I felt the need to update everyone on what is going on. I have also have a constant headache and achy muscles and joints. I think the combination of all of the above is causing me to by really tired and somewhat cranky. I keep thinking a hot shower or bath would really help, but for some reason the hot water in MY bathroom doesn't last long. I don't get that. Cheston's shower is fine. He said it was a user error, but it is clearly not. Something else to get fixed.
I went to the doctor on Friday and not much has changed. He, as well as my hemoc/oncologist are still undecided about what it is exactly that I have. And here I thought they figured it out. The tests they were waiting on to confirm APLAS, in their eyes, came back negative. My rheumatologist is positive it is APLAS and not vasculitis, so we are in the same place as before I went into the hospital as far as diagnosis goes. Well, not really since another possibility is on the table, but it feels the same. At least the course of treatment is the same. I am not sure I could have picked between two different ones. I am going to see a doctor in Chapel Hill that I saw once before that actually specializes and is on the nation board for APLAS. I am also going to see someone at Mayo Clinic that specializes in vasculitis in the kidneys. Hopefully that will either confirm one or the other or give us some ideas about long term treatment.
I go tomorrow for chemo again, so keep me in your thoughts. I hope things go as smoothly as they did the first time. I don't want to get sick. Cheston is going with me tomorrow, Dad is coming into town to stay on Thursday and Mom is taking off Friday. I have two more doctors appointments on Friday. I will let you know later this week how that goes.
I am trying to figure out if I can send individual people messages on here. I know people send me private ones and I would like to respond to you privately, but I can't figure out how. I know I keep asking people for reading material, thank you the ones of you that have offered suggestions. I just finished reading the Twilight series over the weekend, and I have to say that is one of the BEST series of books I have ever read. I will be re-reading them. I had heard a lot about the movie and I really didn't think I would enjoy them, but I got really, really into them. They just pulled me in and drug me away. Beautiful books I think.
I hope everyone has a good week.
kej
Tolerable 2008
Posted Jan 5, 2009 11:00pm
I guess I should start by saying I am sorry I have not updated my page in a few days! I have been so busy, tired and trying to re-adjust to home life that I have not felt like typing (or thinking for that matter). My best friend Rachel, from college, came up to visit on Thursday and she is still here, and let me tell you she has been a Godsend. She has taken me to two doctor appointments and carted me around town to run errands since she has been here. It is nice to know there is someone that can take you places and I don't have to worry about them missing work or school or something else important. On top of that she has helped me with laundry, cleaning etc. I hate she has to leave tomorrow, I have so enjoyed having her around. I guess I will just give everyone the rundown of what I have been doing since I have been home from my home away from home, the North Tower of North Carolina Wake Forest Baptist Hospital.
On Friday I had my first appointment with the heart clinic. They have a program where they have you come in once or twice a week and have your blood (INR) checked to make sure your coumadin is doing its job. I never knew about this clinic until now. It is a relief to be able to get immediate results. Before I had to have lab work drawn and then wait a few days to hear back about changes in meds or whatnot. This gives results in 20 seconds, like checking blood sugar, and she makes changes right there based on what my INR is. It has made me more comfortable because to be honest sometimes I feel like a walking time bomb. I am afraid some days that I will throw a clot and drop dead if my meds have not been regulated right, but this clinic has helped to alleviate some of that anxiety. I know that sounds bad that I think like that sometimes, but I think it is normal, especially when you have a clotting disorder. I have my days where I seem to dwell on being sick more than others. Those are the hard days, and the days I wish I had someone that could be here with me the whole day. For those of you that are interested I am getting adjusted the the correct INR level. On Friday I was at 3.2 and they want me between 2.5-3. When I went today I was at 2.06. I swing from low to high very quickly, so hopefully when I go back on Monday I will be perfect. When I was in the hospital (and a few times at home) I went from 2 to 6.5 overnight and started having severe nosebleeds and started peeing blood. So, like I said it is nice to have such tight control over it now.
My high dose of prednisone has also kicked in, and my face and shoulders are so tight I can barely move. I definitely have a "moon face". When I start to swell like this I hate to go out in public. I feel so bad about myself and the way I look, even though I know I cannot help it. I am slowly being weened down to a low dose, but it cannot come quick enough for me. All I want to do is eat sweets, the one thing I don't need of course. The plan is to keep me on 5-10mg until I finish chemo. The doctors said it should not only help with my brain lesions but with the side effects of chemo as well.
I also look like I have been beaten from all of my bruises and holes from my permacath and PICC line. My foot is extremely swollen and bruised from an IV there, I can hardly wear anything on them. My whole foot is purple. Hopefully I will heal up soon. I got to stop my Lovenox shots on Friday, so my belly is starting to heal a bit. I forget how sore and bruised it is and bump into counters and such. I remember when that happens. OUCH. Just a little side note here, for those of you that don't know what a PICC line is, it is essentially an IV that is put in under ultrasound, but it goes in your upper arm (or mine always has) and it has two lines coming out. This allows one line for IV hookup and one line for drawing blood. It is the greatest thing ever for those of us that have no veins. My only complaint is they refuse to insert them soon enough. They had to do an IV under ultrasound the first day I was there, why not go ahead and do the PICC? We all knew I would be back for one, and sure enough after I was stuck for the 12th time for an IV they decided I needed a PICC line. Well no crap. I told them that from the first stick. It makes me so mad when I am not listened to about that. I mean the phlebotomy people know my name and argue over who has to stick me. Give me a break. Sorry, it just makes me mad I have to go through all of that to get what I told them I needed from the first second I was there.
Anyways, Saturday night Cheston threw a party for my birthday, and we had a great time. It was so nice to be around my friends again. Even better that they all came to my house to hang out. It was a great birthday. I got lots of wonderful cards and gifts, and the best company I could ask for.
Sunday I had a bad day. I woke up to a very sore throat and stopped up nose and head. My feet felt like they were on fire on the bottom and still feel that way. I think it may be a side effect of something I am on. I went to bed at 2 Sat. night and woke at 8, then slept from 9-11, laid in bed and watched a movie and went back to sleep at 3-10 that night. I ate something and went back to bed at 12 and slept until 10 this morning. I think I have been doing too much since I have gotten out of the hospital. I am on my way to bed once again after this. I have a few more doctors appointments this week, and I will try to update everyone as I go. I feel somewhat better today, but I just feel weak and tired as well as achy all over. I think most of it is the prednisone, but I am sure my body is just overly exhausted too.
For the most part my homecoming was great, but I did come home to Dakota having a rip roaring ear infection and a backed up sink in the kitchen. Rachel and I took Kota to the vet today and got his ears checked out and got antibiotic drops, so hopefully he will feel better soon. In the process of taking him Ollie got out and ran off. We had to chase her down in the car. Luckily she just went around the block and was waiting in the front yard when we got back around the block. The plumber came and fixed the sink on Friday and then had to come back today because it backed up again. So, over all I am enjoying being home, but it is hard to adjust to being back here. Every single day is a new challenge for me. I never thought I would be dealing with a chronic illness at my age. It makes me wonder what the future has in store for me sometimes. I know I am blessed and ever so thankful that what I have isn't something more terrible than what I have, but there are days and moments that I have my "pity party" for myself. Though I am trying very hard to hold my head up and deal with it. I keep getting asked how I do it, how do I make it through whatever I happen to be going through at the time. Well, the answer is I don't have much of a choice. I deal with it or or I don't. I choose to deal with it. I also get asked how I am doing a lot. Sometimes I don't know how to answer that, but my dad and I were talking about it and I think the best answer is tolerable. I am not at my worst or my best. I am just tolerating what I can every moment and praying all I can that tolerable will turn into okay soon enough.
Thanks again for those of you that read this and keep up with me and pray for me and think about me. It is all appreciated. Remember if anyone has read a good book recently please let me know! Reading is the only thing I really truly enjoy doing when my eyesight is good enough!
Thanks and much love,
Kinsley
I guess I should start by saying I am sorry I have not updated my page in a few days! I have been so busy, tired and trying to re-adjust to home life that I have not felt like typing (or thinking for that matter). My best friend Rachel, from college, came up to visit on Thursday and she is still here, and let me tell you she has been a Godsend. She has taken me to two doctor appointments and carted me around town to run errands since she has been here. It is nice to know there is someone that can take you places and I don't have to worry about them missing work or school or something else important. On top of that she has helped me with laundry, cleaning etc. I hate she has to leave tomorrow, I have so enjoyed having her around. I guess I will just give everyone the rundown of what I have been doing since I have been home from my home away from home, the North Tower of North Carolina Wake Forest Baptist Hospital.
On Friday I had my first appointment with the heart clinic. They have a program where they have you come in once or twice a week and have your blood (INR) checked to make sure your coumadin is doing its job. I never knew about this clinic until now. It is a relief to be able to get immediate results. Before I had to have lab work drawn and then wait a few days to hear back about changes in meds or whatnot. This gives results in 20 seconds, like checking blood sugar, and she makes changes right there based on what my INR is. It has made me more comfortable because to be honest sometimes I feel like a walking time bomb. I am afraid some days that I will throw a clot and drop dead if my meds have not been regulated right, but this clinic has helped to alleviate some of that anxiety. I know that sounds bad that I think like that sometimes, but I think it is normal, especially when you have a clotting disorder. I have my days where I seem to dwell on being sick more than others. Those are the hard days, and the days I wish I had someone that could be here with me the whole day. For those of you that are interested I am getting adjusted the the correct INR level. On Friday I was at 3.2 and they want me between 2.5-3. When I went today I was at 2.06. I swing from low to high very quickly, so hopefully when I go back on Monday I will be perfect. When I was in the hospital (and a few times at home) I went from 2 to 6.5 overnight and started having severe nosebleeds and started peeing blood. So, like I said it is nice to have such tight control over it now.
My high dose of prednisone has also kicked in, and my face and shoulders are so tight I can barely move. I definitely have a "moon face". When I start to swell like this I hate to go out in public. I feel so bad about myself and the way I look, even though I know I cannot help it. I am slowly being weened down to a low dose, but it cannot come quick enough for me. All I want to do is eat sweets, the one thing I don't need of course. The plan is to keep me on 5-10mg until I finish chemo. The doctors said it should not only help with my brain lesions but with the side effects of chemo as well.
I also look like I have been beaten from all of my bruises and holes from my permacath and PICC line. My foot is extremely swollen and bruised from an IV there, I can hardly wear anything on them. My whole foot is purple. Hopefully I will heal up soon. I got to stop my Lovenox shots on Friday, so my belly is starting to heal a bit. I forget how sore and bruised it is and bump into counters and such. I remember when that happens. OUCH. Just a little side note here, for those of you that don't know what a PICC line is, it is essentially an IV that is put in under ultrasound, but it goes in your upper arm (or mine always has) and it has two lines coming out. This allows one line for IV hookup and one line for drawing blood. It is the greatest thing ever for those of us that have no veins. My only complaint is they refuse to insert them soon enough. They had to do an IV under ultrasound the first day I was there, why not go ahead and do the PICC? We all knew I would be back for one, and sure enough after I was stuck for the 12th time for an IV they decided I needed a PICC line. Well no crap. I told them that from the first stick. It makes me so mad when I am not listened to about that. I mean the phlebotomy people know my name and argue over who has to stick me. Give me a break. Sorry, it just makes me mad I have to go through all of that to get what I told them I needed from the first second I was there.
Anyways, Saturday night Cheston threw a party for my birthday, and we had a great time. It was so nice to be around my friends again. Even better that they all came to my house to hang out. It was a great birthday. I got lots of wonderful cards and gifts, and the best company I could ask for.
Sunday I had a bad day. I woke up to a very sore throat and stopped up nose and head. My feet felt like they were on fire on the bottom and still feel that way. I think it may be a side effect of something I am on. I went to bed at 2 Sat. night and woke at 8, then slept from 9-11, laid in bed and watched a movie and went back to sleep at 3-10 that night. I ate something and went back to bed at 12 and slept until 10 this morning. I think I have been doing too much since I have gotten out of the hospital. I am on my way to bed once again after this. I have a few more doctors appointments this week, and I will try to update everyone as I go. I feel somewhat better today, but I just feel weak and tired as well as achy all over. I think most of it is the prednisone, but I am sure my body is just overly exhausted too.
For the most part my homecoming was great, but I did come home to Dakota having a rip roaring ear infection and a backed up sink in the kitchen. Rachel and I took Kota to the vet today and got his ears checked out and got antibiotic drops, so hopefully he will feel better soon. In the process of taking him Ollie got out and ran off. We had to chase her down in the car. Luckily she just went around the block and was waiting in the front yard when we got back around the block. The plumber came and fixed the sink on Friday and then had to come back today because it backed up again. So, over all I am enjoying being home, but it is hard to adjust to being back here. Every single day is a new challenge for me. I never thought I would be dealing with a chronic illness at my age. It makes me wonder what the future has in store for me sometimes. I know I am blessed and ever so thankful that what I have isn't something more terrible than what I have, but there are days and moments that I have my "pity party" for myself. Though I am trying very hard to hold my head up and deal with it. I keep getting asked how I do it, how do I make it through whatever I happen to be going through at the time. Well, the answer is I don't have much of a choice. I deal with it or or I don't. I choose to deal with it. I also get asked how I am doing a lot. Sometimes I don't know how to answer that, but my dad and I were talking about it and I think the best answer is tolerable. I am not at my worst or my best. I am just tolerating what I can every moment and praying all I can that tolerable will turn into okay soon enough.
Thanks again for those of you that read this and keep up with me and pray for me and think about me. It is all appreciated. Remember if anyone has read a good book recently please let me know! Reading is the only thing I really truly enjoy doing when my eyesight is good enough!
Thanks and much love,
Kinsley
Home Sweet Home 2008
Home Sweet Home
Posted Jan 1, 2009 1:10pm
Yesterday was a long and blessed day. I had Apheresis at 9:00, which my aunt DeeDee came up for, then I went to get my permacath removed. Apheresis was once again very tiring and I slept through most of it, but it was my last treatment. I hope the last one period, but the last for the moment at least. After that I was taken straight down to special procedures, where they removed my permacath. Since I didn't have it that long (10 days or so) it was not too big of a deal to remove. All they did was numb me up with Novocaine and then pull it out. The tricky part is to stop the bleeding once it comes out. Being on blood thinners makes this hard to do. The doctor that pulled it had a really hard time getting it to stop bleeding, I think he applied pressure for about 45 minutes and it was still bleeding. It was a strange feeling, he put A LOT of pressure on it, to the point where I about passed out. He told me to sit up more to stop the bleeding and when I did it opened the wound again.
I finally made it back to my room and my friend from work was there. I was really excited to see him, he is the only visitor I have had from work. While he was there they had to put a 5 pound sandbag on the wound from my permacath to get it to stop bleeding again. (It is still oozing by the way.) THEN, the doctors and a few nurses came in to tell me the GREAT news that they were going to send me home if I was ready! Of course I was ready, but apparently I was not as excited as they had hoped. I think I had been in there so long I had to think about if I was really ready to go home and take care of myself. But once I thought about it for a minute I was ready to go. I just have to give myself shots of the blood thinner Lovenox until my blood gets to the therapeutic range again.
Mom and Cheston picked me up when they got off work. I was so good to see them. Mom and I came home and did some stuff around the house and got me settled in. Cheston got home from his brothers about 10 and we semi-celebrated the New Year. I laid in the bed and Cheston drank a glass of champagne. Big night. Anyways, it is good to be home and once again I thank everyone for their thoughts and prayers and hope you had a great New Year's Eve!
Much Love,
Kinsley
Posted Jan 1, 2009 1:10pm
Yesterday was a long and blessed day. I had Apheresis at 9:00, which my aunt DeeDee came up for, then I went to get my permacath removed. Apheresis was once again very tiring and I slept through most of it, but it was my last treatment. I hope the last one period, but the last for the moment at least. After that I was taken straight down to special procedures, where they removed my permacath. Since I didn't have it that long (10 days or so) it was not too big of a deal to remove. All they did was numb me up with Novocaine and then pull it out. The tricky part is to stop the bleeding once it comes out. Being on blood thinners makes this hard to do. The doctor that pulled it had a really hard time getting it to stop bleeding, I think he applied pressure for about 45 minutes and it was still bleeding. It was a strange feeling, he put A LOT of pressure on it, to the point where I about passed out. He told me to sit up more to stop the bleeding and when I did it opened the wound again.
I finally made it back to my room and my friend from work was there. I was really excited to see him, he is the only visitor I have had from work. While he was there they had to put a 5 pound sandbag on the wound from my permacath to get it to stop bleeding again. (It is still oozing by the way.) THEN, the doctors and a few nurses came in to tell me the GREAT news that they were going to send me home if I was ready! Of course I was ready, but apparently I was not as excited as they had hoped. I think I had been in there so long I had to think about if I was really ready to go home and take care of myself. But once I thought about it for a minute I was ready to go. I just have to give myself shots of the blood thinner Lovenox until my blood gets to the therapeutic range again.
Mom and Cheston picked me up when they got off work. I was so good to see them. Mom and I came home and did some stuff around the house and got me settled in. Cheston got home from his brothers about 10 and we semi-celebrated the New Year. I laid in the bed and Cheston drank a glass of champagne. Big night. Anyways, it is good to be home and once again I thank everyone for their thoughts and prayers and hope you had a great New Year's Eve!
Much Love,
Kinsley
Thin Blood and Greasy Hair 2008
Thin Blood and Greasy Hair
Posted Dec 30, 2008 1:22pm
I guess I should start by saying that yesterday was not a great day. It was not even an okay day. The previous three nights all I did was deal with getting an IV that would work long enough to get me to Monday morning, so they could put in a PICC line. (By the way I am learning how to spell medical terms correctly now. My mom will be very happy. What I thought was pheresis is actually Apheresis. Silent A. How about that?) For those of you that don't know the PICC line is used for those patients that have absolutely no veins, which would include me, and you would understand if you saw my arms and feet. Anyway, they do the PICC by ultrasound and a hollow tube is inserted in your upper arm and threaded with a wire into your main vein to your heart. This means blood and be drawn here too, so I get poked less over all. I should have had one from day one, but it is hard to convince doctors of this sometimes.(*medical people, listen to the patient if they are chronically sick! We know our body by now!*) After this I was taken straight to apheresis. As I have said before, this does not hurt, it is just a very tiring and emotionally draining process. I never thought of how much my body is actually going through physically that it is really not supposed to go through. Plus I was very tired and nauseated because the night before my phosphates where up by a 10th of a point and I had to drink this nasty stuff to make me go to the bathroom. Well that never happened and I just ended up sick to my tummy. Apheresis was very tiring and long and I slept basically the whole time. My BP dropped again and I also needed more Calcium to warm me up.
I finally got back to my room after the long morning and collapsed in bed, where all I wanted to do was go to sleep. As soon as I drifted off here come the Nurse Assistants to take my BP and all that mess. I then woke to my Heparin level being elevated to above 200, and it is supposed to be between 70-90. This means my blood was extremely thin and needless to say I was covered in blood. I was taken off the drip for about 5 hours in order to stop the bleeding, but every time I moved there was a trail of blood that followed. Patsy, Renna, Cheston and Dad were here at the time, I am sure that was gross for them. (But I really did enjoy their visit, it was the highlight of my last 2 days.)
So, all of that meant NO SHOWER because they were afraid I would open up whatever clotting had taken place. So at this point I have enough grease in my hair to fry chicken. Especially since my hair is short now, it gets greasier even quicker. Dad and I went to bed early last night because once the bleeding was under control there was really nothing else to do. To Shana, I AM reading the Twilight series, and I absolutely LOVE it. I am reading New Moon right now. Can we say ADDICTED?
Tomorrow I have my last round of Apheresis for this point in time. It may be decided I need it again later, but this is it for now. Right after I have the treatment I will go down and have the permacath in my neck removed. When I was having the PICC line placed it was very interesting to watch on the x-ray screen because both the cath and the PICC go to your heart, and you can see them meeting in there. They had to play around a little to get them to where they wouldn't touch.
I have to say that over all I think I am feeling a little bit better and more optimistic. I am ready to go home, and I hope to get there by my birthday (2nd) at least. I start Coumadin (or Warfarin, whatever you want to call it) again tonight, so I am praying to get home quickly.
Some of my docs came in this morning, and eveyone is still feeling pretty good about my diagnosis, and we are still going to peruse Mayo Clinic, Cleavland Clinic and Chapel Hill. We also found out today there is a clinic that ONLY takes care of regulating Coumdin and keeping your INR where it needs to be. I will also start going to a pain clinic for all the pain I have on a daily basis. My next round of chemo for those that want to know is Jan. 14th. The docs said after this round I will have a better idea about how sick I will get. I think that pretty much gets us up to speed. I am still bleeding just a bit, but I am going to take a nap now and I am hoping when I get up I can take a MUCH NEEDED shower and feel like a semi new woman. If anyone wants to visit feel free! You may want to call first, it is 702-6808.
Kinsley
PS*BRING CHOCOLATE:)
Posted Dec 30, 2008 1:22pm
I guess I should start by saying that yesterday was not a great day. It was not even an okay day. The previous three nights all I did was deal with getting an IV that would work long enough to get me to Monday morning, so they could put in a PICC line. (By the way I am learning how to spell medical terms correctly now. My mom will be very happy. What I thought was pheresis is actually Apheresis. Silent A. How about that?) For those of you that don't know the PICC line is used for those patients that have absolutely no veins, which would include me, and you would understand if you saw my arms and feet. Anyway, they do the PICC by ultrasound and a hollow tube is inserted in your upper arm and threaded with a wire into your main vein to your heart. This means blood and be drawn here too, so I get poked less over all. I should have had one from day one, but it is hard to convince doctors of this sometimes.(*medical people, listen to the patient if they are chronically sick! We know our body by now!*) After this I was taken straight to apheresis. As I have said before, this does not hurt, it is just a very tiring and emotionally draining process. I never thought of how much my body is actually going through physically that it is really not supposed to go through. Plus I was very tired and nauseated because the night before my phosphates where up by a 10th of a point and I had to drink this nasty stuff to make me go to the bathroom. Well that never happened and I just ended up sick to my tummy. Apheresis was very tiring and long and I slept basically the whole time. My BP dropped again and I also needed more Calcium to warm me up.
I finally got back to my room after the long morning and collapsed in bed, where all I wanted to do was go to sleep. As soon as I drifted off here come the Nurse Assistants to take my BP and all that mess. I then woke to my Heparin level being elevated to above 200, and it is supposed to be between 70-90. This means my blood was extremely thin and needless to say I was covered in blood. I was taken off the drip for about 5 hours in order to stop the bleeding, but every time I moved there was a trail of blood that followed. Patsy, Renna, Cheston and Dad were here at the time, I am sure that was gross for them. (But I really did enjoy their visit, it was the highlight of my last 2 days.)
So, all of that meant NO SHOWER because they were afraid I would open up whatever clotting had taken place. So at this point I have enough grease in my hair to fry chicken. Especially since my hair is short now, it gets greasier even quicker. Dad and I went to bed early last night because once the bleeding was under control there was really nothing else to do. To Shana, I AM reading the Twilight series, and I absolutely LOVE it. I am reading New Moon right now. Can we say ADDICTED?
Tomorrow I have my last round of Apheresis for this point in time. It may be decided I need it again later, but this is it for now. Right after I have the treatment I will go down and have the permacath in my neck removed. When I was having the PICC line placed it was very interesting to watch on the x-ray screen because both the cath and the PICC go to your heart, and you can see them meeting in there. They had to play around a little to get them to where they wouldn't touch.
I have to say that over all I think I am feeling a little bit better and more optimistic. I am ready to go home, and I hope to get there by my birthday (2nd) at least. I start Coumadin (or Warfarin, whatever you want to call it) again tonight, so I am praying to get home quickly.
Some of my docs came in this morning, and eveyone is still feeling pretty good about my diagnosis, and we are still going to peruse Mayo Clinic, Cleavland Clinic and Chapel Hill. We also found out today there is a clinic that ONLY takes care of regulating Coumdin and keeping your INR where it needs to be. I will also start going to a pain clinic for all the pain I have on a daily basis. My next round of chemo for those that want to know is Jan. 14th. The docs said after this round I will have a better idea about how sick I will get. I think that pretty much gets us up to speed. I am still bleeding just a bit, but I am going to take a nap now and I am hoping when I get up I can take a MUCH NEEDED shower and feel like a semi new woman. If anyone wants to visit feel free! You may want to call first, it is 702-6808.
Kinsley
PS*BRING CHOCOLATE:)
Pin Cushion 2008
Pin Cushions
Posted Dec 28, 2008 9:04pm
My IV blew last night. Cheston and I were up until 2 am getting a new IV put in. Then it blew today. Between last night and tonight I have been stuck nine times, the tenth being the IV that got started in my foot. (Last resort, I hate my feet getting stuck.) I am getting a pickline in the morning, which in my opinion I should have had all along. I also have apheresis in the morning. My dad came in to town today, so he will be here with me tomorrow for treatment.
I was hoping to go home today or tomorrow, but the docs think it is in my best interest to stay until all my apheresis treatments are complete, (Wed.) and then until my INR is thereputic. I will most likely still have to give myself shots when I get home to regulate my blood consistancy. SO, I am hoping and praying I will be out of here on my b-day, but I am having serious doubts about that. Friday will come too quick, and my blood is too slow. I am going stir crazy still, so feel free to come see me! Jamie came and saw me today and that helped to pass the time a bit. It is always good to see friends and familiar faces. I hope everyone has a good week at work!
Kinsley
Posted Dec 28, 2008 9:04pm
My IV blew last night. Cheston and I were up until 2 am getting a new IV put in. Then it blew today. Between last night and tonight I have been stuck nine times, the tenth being the IV that got started in my foot. (Last resort, I hate my feet getting stuck.) I am getting a pickline in the morning, which in my opinion I should have had all along. I also have apheresis in the morning. My dad came in to town today, so he will be here with me tomorrow for treatment.
I was hoping to go home today or tomorrow, but the docs think it is in my best interest to stay until all my apheresis treatments are complete, (Wed.) and then until my INR is thereputic. I will most likely still have to give myself shots when I get home to regulate my blood consistancy. SO, I am hoping and praying I will be out of here on my b-day, but I am having serious doubts about that. Friday will come too quick, and my blood is too slow. I am going stir crazy still, so feel free to come see me! Jamie came and saw me today and that helped to pass the time a bit. It is always good to see friends and familiar faces. I hope everyone has a good week at work!
Kinsley
Boredom 2008
Boredom
Posted Dec 27, 2008 7:19pm
Today was a better day. I had a rough day yesterday, I am ready to go home. Mentally at least. Unfortunately, according to my blood work I am not allowed to yet. I was very frustrated sitting here staring at these four walls, knowing I could not break free of them yet. I wanted so badly to go shopping and buy myself something. I cannot tell you the last time I was able to do that. I just wanted to go window shopping even. Then mom came over and she and I got out of the room last night and visited Brenners. For those of you that have not had the chance to visit Brenners Children's Hospital, it is beautiful around the holidays. Bright and cheery, each floor is decorated like a part of N.C, (the sea, the mountains, etc.) and each floor has many pretty trees and lights, just what I needed to see. It really makes me humble to think of all the families with little kids that are in the hospital. At least I am at an age where I can process and somewhat understand what is going on. Children cannot grasp why they feel the way they do, and unfortunately a lot of them have known nothing but sickness for their whole existence. It saddens my heart.
I talked to Nana last night, she is going through a lot of the same things I am going through. It is interesting how our diagnosis and treatments/drug regimens seem to line up. She, however, is having a lot of pain that I am not experiencing. As you keep me in your prayers, please keep my Nana in them too. It makes me sad to talk to her right now. She has always been the one of the most positive people I know. She has been through cancers, lymphoma, congestive heart failure, diabetes, and other problems and through it all has held her head high and not complained a bit. She has always had this unshakable faith in the Lord, and it brings me to my knees to see her going through the pain she is going through with dialysis treatments and the like. I do not question her faith, but I think is going through a lot of physical pain and needs the extra love, encouragement and prayers to help sustain her right now. I can only imagine how my parents feel knowing how I feel about my 84 year old Nana.
I didn't sleep well last night, the line they put in for pheresis is healing, and it just feels very sore and uncomfortable. I hope I will not have to have this line too much longer. There is a high risk of infection with this line, so the less it is accessed the better.
I woke today in a better frame of mind. Mom spent the night last night, and when we got up I got a good shower and the nurse was able to clean up my access line. Those of you that know me well enough know how anal and picky I am about things being clean and having all of the tape and stuff off my body. After that mom and I went to the gift shop and browsed and ate at the bagel place downstairs. It helped to get out of the room. I then took a much needed nap once the nurse gave me pain meds. I just woke up a little while ago, Ashley came to visit me:) It was nice to see her. I miss hanging out in a normal situation. I can't wait to be able to do that again. I am feeling okay today, just tired and drained. I have been having some tummy issues today though. I am still on steroids, trying to taper off of them from chemo, and I am having major hot flashes from them. I sit here and drip sweat. I hate it. I hate being hot all the time. I also have been keeping a slight fever, only 99ish, but that is a fever for someone who is usually in the 97s.
Tomorrow my dad is coming in and spending the night, so I am happy to get to see him. He will be with me for my pheresis treatment on Monday morning. I guess this is it for tonight, thanks again to all of you that keep up with me and pray for me!
Kinsley
Posted Dec 27, 2008 7:19pm
Today was a better day. I had a rough day yesterday, I am ready to go home. Mentally at least. Unfortunately, according to my blood work I am not allowed to yet. I was very frustrated sitting here staring at these four walls, knowing I could not break free of them yet. I wanted so badly to go shopping and buy myself something. I cannot tell you the last time I was able to do that. I just wanted to go window shopping even. Then mom came over and she and I got out of the room last night and visited Brenners. For those of you that have not had the chance to visit Brenners Children's Hospital, it is beautiful around the holidays. Bright and cheery, each floor is decorated like a part of N.C, (the sea, the mountains, etc.) and each floor has many pretty trees and lights, just what I needed to see. It really makes me humble to think of all the families with little kids that are in the hospital. At least I am at an age where I can process and somewhat understand what is going on. Children cannot grasp why they feel the way they do, and unfortunately a lot of them have known nothing but sickness for their whole existence. It saddens my heart.
I talked to Nana last night, she is going through a lot of the same things I am going through. It is interesting how our diagnosis and treatments/drug regimens seem to line up. She, however, is having a lot of pain that I am not experiencing. As you keep me in your prayers, please keep my Nana in them too. It makes me sad to talk to her right now. She has always been the one of the most positive people I know. She has been through cancers, lymphoma, congestive heart failure, diabetes, and other problems and through it all has held her head high and not complained a bit. She has always had this unshakable faith in the Lord, and it brings me to my knees to see her going through the pain she is going through with dialysis treatments and the like. I do not question her faith, but I think is going through a lot of physical pain and needs the extra love, encouragement and prayers to help sustain her right now. I can only imagine how my parents feel knowing how I feel about my 84 year old Nana.
I didn't sleep well last night, the line they put in for pheresis is healing, and it just feels very sore and uncomfortable. I hope I will not have to have this line too much longer. There is a high risk of infection with this line, so the less it is accessed the better.
I woke today in a better frame of mind. Mom spent the night last night, and when we got up I got a good shower and the nurse was able to clean up my access line. Those of you that know me well enough know how anal and picky I am about things being clean and having all of the tape and stuff off my body. After that mom and I went to the gift shop and browsed and ate at the bagel place downstairs. It helped to get out of the room. I then took a much needed nap once the nurse gave me pain meds. I just woke up a little while ago, Ashley came to visit me:) It was nice to see her. I miss hanging out in a normal situation. I can't wait to be able to do that again. I am feeling okay today, just tired and drained. I have been having some tummy issues today though. I am still on steroids, trying to taper off of them from chemo, and I am having major hot flashes from them. I sit here and drip sweat. I hate it. I hate being hot all the time. I also have been keeping a slight fever, only 99ish, but that is a fever for someone who is usually in the 97s.
Tomorrow my dad is coming in and spending the night, so I am happy to get to see him. He will be with me for my pheresis treatment on Monday morning. I guess this is it for tonight, thanks again to all of you that keep up with me and pray for me!
Kinsley
New Do 2008
The New Do
Posted Dec 26, 2008 6:27pm
Christmas Day proved to be a longer and harder day than I expected. Growing up we had our traditions as all families, but our traditions were, well, somewhat untraditional being from a family where the kids wanted to see Mom, Dad AND Santa as well as the hodge-podge of other extended family. I didn't really think it would be that big of a deal to be in the hospital, because I ended up being with Mom and Cheston the better part of the day. But, I had some alone time and I have to say I really missed sitting in a circle on the floor opening gifts one by one, fighting with Trentt over the last one opened. I missed being able to go to Dad and Vicky's and baking Christmas cookies, as well as spending time with them. But what I REALLY missed was the fact that all of us couldn't be together on such a special day. Pop is down in York with Dad, since Nana is in the assisted living facility where Vicky works.This is the first Christmas in my 26 years that I have not seen them on Christmas morning. It saddens me to think that I may not have that opportunity again. But, with me sick and Nana sick people in our family are spread pretty thin these days. On a lighter note, Trentt and Amy and the boys came in earlier this week and we did Christmas here at the hospital with them. I swear those are the two cutest boys on God's Great Green Earth. They have the ability to lighten my heart and my mind like no other. I hope they had a wonderful morning with Santa.
I got up and had the wonderful gift of my own personal hair dresser at the hospital on Christmas morning. Arthur and Tamera were generous enough to came and spread a sheet in the hall and get to snippin'. They really did not have to come do this on Christmas, but is is so heart warming to know there are peple out there caring enough to take time out on such a special day to come make my day a little brighter. I got a cute new do, an amazingly low mantinence hair cut, and I love it.
I had my third round of apheresis today. (I hope I am spelling that right.) It was nice because of the holiday the cancer center was closed, so they came to my room to do the treatment. My blood pressure dropped quicker today than the previous two times. Within the first ten minutes my BP went down to 97/61, so she just adjusted the fluid exchanage so it wasn't as fast. Apheresis is a very interesting feeling. It tires me out, but being able to visualize all of the "BAD" antibodies coming out of me seems to help my mental status. Apparently the process of apheresis slows down my PT/INR time, so it is taking wwwwaaaayyy too long to get to the number I need to be at to go home. It is very tricky, especially in me, to get the perfect blood consistancy. It can't be to thick because I have the clotting disoreder, but if it is too thin I run the risk of another organ hemmorage. And I really don't want to end up in ICU again. This is the first time I have been in the hospital in a year and a half where I actually feel like being awake, so needless to say I am going stir crazy. I have cabin fever and I am driving myself and the nurses crazy. Plus I have a headache that will not go away for anything.
Suzanne, you may regret setting this page up. If I am bored I will be on it.:)
I do want to thank all of you that have left messages, encouragement and prayers for me. I do believe in the power of prayer and I am gracious for them all. It amazes me on a daily basis that there are so many people out there that do not know me and are willing to pray for me and offer such support to me and my family. Until tomorrow...Kinsley
Posted Dec 26, 2008 6:27pm
Christmas Day proved to be a longer and harder day than I expected. Growing up we had our traditions as all families, but our traditions were, well, somewhat untraditional being from a family where the kids wanted to see Mom, Dad AND Santa as well as the hodge-podge of other extended family. I didn't really think it would be that big of a deal to be in the hospital, because I ended up being with Mom and Cheston the better part of the day. But, I had some alone time and I have to say I really missed sitting in a circle on the floor opening gifts one by one, fighting with Trentt over the last one opened. I missed being able to go to Dad and Vicky's and baking Christmas cookies, as well as spending time with them. But what I REALLY missed was the fact that all of us couldn't be together on such a special day. Pop is down in York with Dad, since Nana is in the assisted living facility where Vicky works.This is the first Christmas in my 26 years that I have not seen them on Christmas morning. It saddens me to think that I may not have that opportunity again. But, with me sick and Nana sick people in our family are spread pretty thin these days. On a lighter note, Trentt and Amy and the boys came in earlier this week and we did Christmas here at the hospital with them. I swear those are the two cutest boys on God's Great Green Earth. They have the ability to lighten my heart and my mind like no other. I hope they had a wonderful morning with Santa.
I got up and had the wonderful gift of my own personal hair dresser at the hospital on Christmas morning. Arthur and Tamera were generous enough to came and spread a sheet in the hall and get to snippin'. They really did not have to come do this on Christmas, but is is so heart warming to know there are peple out there caring enough to take time out on such a special day to come make my day a little brighter. I got a cute new do, an amazingly low mantinence hair cut, and I love it.
I had my third round of apheresis today. (I hope I am spelling that right.) It was nice because of the holiday the cancer center was closed, so they came to my room to do the treatment. My blood pressure dropped quicker today than the previous two times. Within the first ten minutes my BP went down to 97/61, so she just adjusted the fluid exchanage so it wasn't as fast. Apheresis is a very interesting feeling. It tires me out, but being able to visualize all of the "BAD" antibodies coming out of me seems to help my mental status. Apparently the process of apheresis slows down my PT/INR time, so it is taking wwwwaaaayyy too long to get to the number I need to be at to go home. It is very tricky, especially in me, to get the perfect blood consistancy. It can't be to thick because I have the clotting disoreder, but if it is too thin I run the risk of another organ hemmorage. And I really don't want to end up in ICU again. This is the first time I have been in the hospital in a year and a half where I actually feel like being awake, so needless to say I am going stir crazy. I have cabin fever and I am driving myself and the nurses crazy. Plus I have a headache that will not go away for anything.
Suzanne, you may regret setting this page up. If I am bored I will be on it.:)
I do want to thank all of you that have left messages, encouragement and prayers for me. I do believe in the power of prayer and I am gracious for them all. It amazes me on a daily basis that there are so many people out there that do not know me and are willing to pray for me and offer such support to me and my family. Until tomorrow...Kinsley
Christmas Morning 2008
Christmas Morning
Posted Dec 25, 2008 8:52am
Well, fist of all, Merry Christmas to everyone! I am still in bed at the hospital waiting for my fiance to wake, and I thought I would check out this webpage that my cousin, Suzanne, set up for me. Those of you that have people asking about me and you want to refer them to this page, please feel free to do so. I do not have too many email addresses. I think this is a great idea, and I am going to try and post on here a few times a week. It is very strange to wake in the hospital on Christmas morning, instead of my warm, cuddly bed. But, it is okay, this is the best place for me at the moment.
The first post that was sent out was the email most of you got about what I am having done this round in the hospital. This past Monday I had all of the proceedures done that we had planned. I have the permacath in my chest, which is being used for my plasmaphresis. I think this is actually a pretty neat process to watch. This machine pulls out about 1/3 of my blood and seperates it and puts it back. My plasma, where the "bad antibodies" are, are seperated and left hanging in a bag to be thrown away. I look at it as getting rid of the bag stuff and now my blood is getting nice and clean. As you can imagine, if you have that much blood moving in and out of you body there are most likely going to be side effects. The only ones I really have had are a bad taste in my mouth from the combo of this and chemo, as well as getting very cold. When I get cold I start to almost vibrate from the inside out. They will give a bolis of calcium in my IV when I get cold, and that helps warm me up. I have had two rounds of this, but we are hoping I only need three more and then can have the permacath removed. It is annoying because it absolutely cannot get wet. I was very tired after my treatment yesterday, so I am hoping tomorrow will be better since I have a break today.
I also had the MRI with contrast on Monday, after I had my permacath (line) put it. This was to be positive I didn't have a brain tumor or major infection and such. Just to rule out as much as possible. After that I had one treatment of dialysis to filter out all of the dye, which is considered extremely harmful to kidneys that are not functioning normal, as mine are not. That lasted 3 hours, which I slept through. Then I had the spinal tap, and I have to say that did not feel good at all. If you are blessed enought not to have had one, what they do is lay you on you stomach and insert a really long needle into you lower spine to draw out spinal fluid. You have to lay very still, and it is very hard to do this while someone is inserting a needle a few inches long into your bone. We are waiting at this point to get the formal reading of the MRI back, but from what can be read by my team of doctors, they say it looks much better. I think they want to get info back from the spinal tap before they comment too much.
Now, as for the Cytoxan, or chemo. I started that last Thursday. It was not as bad as I expected, I guess I just never dreamed that this would be my life at as 26 (almost 27). During infusion I didn't get sick, but the 2 days after I felt pretty sick to my tummy. There are many side effects, as with any drugs, they main one for me being lowering the rates of fertility. For those of you that know me you know children are really important to me. (More on that later I am sure...this is one that tends to lay on my heart, even though there are many options out there.) I will most likely lose some of my hair, maybe not all. They are not sure, but my hairdresser is coming to give me a Christmas Do. I am excited to get it cut. I have been so hot, and trying to keep it clean will be easier. I am also back on steroids for a short time, so my face is super round again.
The docs just came and left, and I may get to go home tomorrow. If my blood is thick enough I will get to go home after pheresis. I am so ready to get in my own bed and be with Cheston and my dogs. Well, I guess this is it for now. I can tell I will be on here a lot. I love you guys and I hope you all have a Happy and Blessed Christmas.
Posted Dec 25, 2008 8:52am
Well, fist of all, Merry Christmas to everyone! I am still in bed at the hospital waiting for my fiance to wake, and I thought I would check out this webpage that my cousin, Suzanne, set up for me. Those of you that have people asking about me and you want to refer them to this page, please feel free to do so. I do not have too many email addresses. I think this is a great idea, and I am going to try and post on here a few times a week. It is very strange to wake in the hospital on Christmas morning, instead of my warm, cuddly bed. But, it is okay, this is the best place for me at the moment.
The first post that was sent out was the email most of you got about what I am having done this round in the hospital. This past Monday I had all of the proceedures done that we had planned. I have the permacath in my chest, which is being used for my plasmaphresis. I think this is actually a pretty neat process to watch. This machine pulls out about 1/3 of my blood and seperates it and puts it back. My plasma, where the "bad antibodies" are, are seperated and left hanging in a bag to be thrown away. I look at it as getting rid of the bag stuff and now my blood is getting nice and clean. As you can imagine, if you have that much blood moving in and out of you body there are most likely going to be side effects. The only ones I really have had are a bad taste in my mouth from the combo of this and chemo, as well as getting very cold. When I get cold I start to almost vibrate from the inside out. They will give a bolis of calcium in my IV when I get cold, and that helps warm me up. I have had two rounds of this, but we are hoping I only need three more and then can have the permacath removed. It is annoying because it absolutely cannot get wet. I was very tired after my treatment yesterday, so I am hoping tomorrow will be better since I have a break today.
I also had the MRI with contrast on Monday, after I had my permacath (line) put it. This was to be positive I didn't have a brain tumor or major infection and such. Just to rule out as much as possible. After that I had one treatment of dialysis to filter out all of the dye, which is considered extremely harmful to kidneys that are not functioning normal, as mine are not. That lasted 3 hours, which I slept through. Then I had the spinal tap, and I have to say that did not feel good at all. If you are blessed enought not to have had one, what they do is lay you on you stomach and insert a really long needle into you lower spine to draw out spinal fluid. You have to lay very still, and it is very hard to do this while someone is inserting a needle a few inches long into your bone. We are waiting at this point to get the formal reading of the MRI back, but from what can be read by my team of doctors, they say it looks much better. I think they want to get info back from the spinal tap before they comment too much.
Now, as for the Cytoxan, or chemo. I started that last Thursday. It was not as bad as I expected, I guess I just never dreamed that this would be my life at as 26 (almost 27). During infusion I didn't get sick, but the 2 days after I felt pretty sick to my tummy. There are many side effects, as with any drugs, they main one for me being lowering the rates of fertility. For those of you that know me you know children are really important to me. (More on that later I am sure...this is one that tends to lay on my heart, even though there are many options out there.) I will most likely lose some of my hair, maybe not all. They are not sure, but my hairdresser is coming to give me a Christmas Do. I am excited to get it cut. I have been so hot, and trying to keep it clean will be easier. I am also back on steroids for a short time, so my face is super round again.
The docs just came and left, and I may get to go home tomorrow. If my blood is thick enough I will get to go home after pheresis. I am so ready to get in my own bed and be with Cheston and my dogs. Well, I guess this is it for now. I can tell I will be on here a lot. I love you guys and I hope you all have a Happy and Blessed Christmas.
Catching Up
I have spent a few days trying to decide the best way to update everyone on what is going on in my life. I discovered I can cut and paste from my care pages where I kept my previous blog. SO, I am going to cut and paste everything from that so I can have it all in one place AND update the past year of medical history. I am toying with the idea of trying my hand at writing a book since I have an extremely unusual medical history. I have had quite a few people encourage me to try it. This will also help me keep some structure and help me with an outline if I decide to try it. I know a lot of this will be boring, but I think this will be a therapeutic outlet for me. And let's be honest-I seriously doubt I will have a lot of followers:) So without further ado, I am going to start at December 2008. I will post each entry as separate blog entries.
Posted Dec 22, 2008 9:02pm
Hello All,
I just wanted to let everyone know what is going on in "Kinsley's World of Health." During the end of October/start of November my blood work was looking better. Then the week before Thanksgiving I fell down the stairs at Trentt and Amy's house and hit the back of my my head. Being on blood thinners, my parents thought I should to the ED. I started having vision issues, balance issues, etc. A week later things were not better, they were getting worse, so I went back to the ED, this time I had lesions on my brain stem. I could not get in to see a rhuemotologist and nephrologist quick enough so I was admitted to the day hospital this past Tuesday, and I am still here.
We were not here expecting to get a diagnosis, especially since it has been almost 2 years of not going anywhere, just maintaining what I have. Then, the new rheumotolgist came in after reviewing my case and he is really familiar with this disease and is convinced it is what I have. I have all of the symptoms, but the only problem with it is the test for it. It has only showed up positive one time. When I was tested this week it was negative again. Dr. Mishra says being on warfarin (blood thinners I am on) will cause the test to show up negative. So, my hematologist/oncologist wants to run two more tests before they will say without doubt that this is what it is. The name of the disease is Antiphospholipid Antibody Syndrome. My type would be catastrophic because it has affected more than one organ or system in my body. Things seem to line up with the progression of the disease and how things have been brought on.
The reason past treatments have not worked is because my body was basically rejecting itself and the drugs were not strong enough to kick its butt. With all of this being said, I am going to include a website if you care to browse, and also tell you what they plan as far as treatment for me. Treatment makes me a little uneasy right now, but I will get through it and I hope to feel better than I have ever felt in the past. I am waiting for my blood to get thick enough (which it is now) to have a perma cath put in my neck. This will also access to my jugular without having to be stuck all the time. I am number one on the list Monday morning. I will be somewhat sedated to do this. Then I will have a MRI of my brain with contrast to make sure there is no tumor and or infection, which is not expected. After that I will have ONE treatment on dialysis to get all of the dye out of my system, because it is so harmful to my kidneys. (I guess I should say at this point that I have had a lot of damage to my left kidney from vasculitis, and it is in the process of dying.)Then, I will have a spinal tap for the same reason, just to rule out any fungal/bacterial type infections. After that I will be hooked up to a machine that will take out all of the bad antibodies in my blood. I don't know how many sessions I will have yet, but the original goal was Mon-Wed and be done with it. Depending on my blood work will depend on how often I have to have the plasmapherisis done. Now, that gets as many bad antibodies out as possible, and I am taking chemo to prevent more from forming. I started chemo on Thursday. (The chemo drug I will be taking is Cytoxan.)
Anyway, this is what is going on at the moment. I am in Room 808 in the North tower and my number is 702-6808. I hope to be home for the holidays, but I am not holding my breath on that one at this point. I hope this finds you all doing well! If anyone would like to visit feel free!
http://www.apsfa.org/index.html
Love,
Kinsley
Posted Dec 22, 2008 9:02pm
Hello All,
I just wanted to let everyone know what is going on in "Kinsley's World of Health." During the end of October/start of November my blood work was looking better. Then the week before Thanksgiving I fell down the stairs at Trentt and Amy's house and hit the back of my my head. Being on blood thinners, my parents thought I should to the ED. I started having vision issues, balance issues, etc. A week later things were not better, they were getting worse, so I went back to the ED, this time I had lesions on my brain stem. I could not get in to see a rhuemotologist and nephrologist quick enough so I was admitted to the day hospital this past Tuesday, and I am still here.
We were not here expecting to get a diagnosis, especially since it has been almost 2 years of not going anywhere, just maintaining what I have. Then, the new rheumotolgist came in after reviewing my case and he is really familiar with this disease and is convinced it is what I have. I have all of the symptoms, but the only problem with it is the test for it. It has only showed up positive one time. When I was tested this week it was negative again. Dr. Mishra says being on warfarin (blood thinners I am on) will cause the test to show up negative. So, my hematologist/oncologist wants to run two more tests before they will say without doubt that this is what it is. The name of the disease is Antiphospholipid Antibody Syndrome. My type would be catastrophic because it has affected more than one organ or system in my body. Things seem to line up with the progression of the disease and how things have been brought on.
The reason past treatments have not worked is because my body was basically rejecting itself and the drugs were not strong enough to kick its butt. With all of this being said, I am going to include a website if you care to browse, and also tell you what they plan as far as treatment for me. Treatment makes me a little uneasy right now, but I will get through it and I hope to feel better than I have ever felt in the past. I am waiting for my blood to get thick enough (which it is now) to have a perma cath put in my neck. This will also access to my jugular without having to be stuck all the time. I am number one on the list Monday morning. I will be somewhat sedated to do this. Then I will have a MRI of my brain with contrast to make sure there is no tumor and or infection, which is not expected. After that I will have ONE treatment on dialysis to get all of the dye out of my system, because it is so harmful to my kidneys. (I guess I should say at this point that I have had a lot of damage to my left kidney from vasculitis, and it is in the process of dying.)Then, I will have a spinal tap for the same reason, just to rule out any fungal/bacterial type infections. After that I will be hooked up to a machine that will take out all of the bad antibodies in my blood. I don't know how many sessions I will have yet, but the original goal was Mon-Wed and be done with it. Depending on my blood work will depend on how often I have to have the plasmapherisis done. Now, that gets as many bad antibodies out as possible, and I am taking chemo to prevent more from forming. I started chemo on Thursday. (The chemo drug I will be taking is Cytoxan.)
Anyway, this is what is going on at the moment. I am in Room 808 in the North tower and my number is 702-6808. I hope to be home for the holidays, but I am not holding my breath on that one at this point. I hope this finds you all doing well! If anyone would like to visit feel free!
http://www.apsfa.org/index.html
Love,
Kinsley
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