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
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