I have been on a retreat with my Northwest Passage group for the last two days. Yesterday we did a ropes course that left me frustrated and doubting my physical abilities. I couldn't complete tasks that involved balance and visual impairments.
At one point I ended up in tears. Mad that my body wasn't cooperating with my brain. Frustrated that I seemed inadequate. Disappointed that I couldn't complete the task at hand. And most of all, scared that all of it was out of my control and terrified that this was only the beginning of what is to come.
Today we went rock climbing. Based on yesterdays experience, I was prepared for failure. But on the way there, I decided that I had to try. If I live my life in fear of what I can not do, the MS has already beaten me. If I try and things don't go according to plan, at least I know where my limitations lie. And just because things don't go well today, doesn't mean that they won't go better tomorrow.
So we hiked up to the top of Horse Thief Butte, just east of Dallesport, WA and prepared to repel down a rock cliff about 150 feet up. After we harnessed in, we called for belay on and walked backwards to the edge, putting all of our weight against the rope that was tied into the rock. Then, one step at a time, we began to walk backwards off the cliff face until we were fully supported by the harness and the rope. Dangling out over the open space and looking to the west at the snow covered face of Mt. Hood.
On the way down my hands went completely numb and I grew more exhausted with every step. But I made it! I made it all the way to the bottom, without having to stop and turn my decent over to my partner on belay. When I got there I collapsed into a quivering pile of jello. My right hand tremoring and cramping into a claw for about 30 minutes.
Yes, the tremor and the claw hand are embarrassing. The fact that I walked around tripping over grass and dust piles for about an hour after my decent is too. But I didn't care. I did it! I tried something I didn't think I could do. I pushed myself and worked up to my limits. Yes there was a trade off of being exhausted. I decided that I wasn't up to climbing anything in the afternoon. But I repelled. Right off the face of a cliff and into the unknown. And I am so glad that I did!
Saturday, 30 May 2009
Thursday, 28 May 2009
Stop the Presses!
So my crazy insurance company did an about face and decided to approve the chromosome test that they were not wanting to do yesterday. The good news there is that I don't have to do the bone marrow aspiration next week! Woohoo!!!
Also, while my white count is still up; the doctor told me when I went back for my second draw of the day, that he did NOT see any myleocystic leukocytes today! Plus, he was talking to a colleague about me today and was reminded of a rare blood disorder that doesn't do anything negative to you, it just gives you a high white count for no apparent reason (chronic non-specific leukocytosis is what I think he called it). In other words; it doesn't go away, they don't know what causes it and it involves the white cells. The good news; they monitor it and it doesn't seem to do anything bad to you.
So I have 1-2 weeks to wait for the chromosome test to come back. Pray that they don't see the Philadelphia Chromosome! Philadelphia is a great place to visit, but I don't need any souvenirs.
Also, while my white count is still up; the doctor told me when I went back for my second draw of the day, that he did NOT see any myleocystic leukocytes today! Plus, he was talking to a colleague about me today and was reminded of a rare blood disorder that doesn't do anything negative to you, it just gives you a high white count for no apparent reason (chronic non-specific leukocytosis is what I think he called it). In other words; it doesn't go away, they don't know what causes it and it involves the white cells. The good news; they monitor it and it doesn't seem to do anything bad to you.
So I have 1-2 weeks to wait for the chromosome test to come back. Pray that they don't see the Philadelphia Chromosome! Philadelphia is a great place to visit, but I don't need any souvenirs.
And the magic number is... not 16.9.
My white count is still up. In fact, it is up even higher than 2 weeks ago. I am waiting on the meylocystic leukocyte count, but my hematologist is guessing that it will be up too. If only the stock market would head up like my white count!
He has ordered a bone marrow aspiration next Friday morning. It should tell us definitively if I have CGL or CML. Both are pretty much the same thing, chronic meyleocystic leukemia. The good news is still that if that is the diagnosis, we will have caught it early and the treatment (Glevik) is very effective and has fewer side effects than many other forms of chemo.
So, we still don't know if I have cancer. And we aren't going to freak out about it. That means you. And me too!
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-7
He has ordered a bone marrow aspiration next Friday morning. It should tell us definitively if I have CGL or CML. Both are pretty much the same thing, chronic meyleocystic leukemia. The good news is still that if that is the diagnosis, we will have caught it early and the treatment (Glevik) is very effective and has fewer side effects than many other forms of chemo.
So, we still don't know if I have cancer. And we aren't going to freak out about it. That means you. And me too!
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-7
Wednesday, 27 May 2009
Waiting game
No news yet on when my neurology appointment will be. OHSU will not schedule an appointment without a referral in hand, and since my doctor made the referral yesterday, they don't have it just yet. Scheduling said they would call me when they had it, but I am not the most patient person when it comes to scheduling. I will let them be til Friday and then I am calling again.
I have my follow up appointment with the hematologist on Thursday. Still waiting for my insurance company to approve the additional testing that he wants to run. I am just hoping that the CBC will show that my white count is in a normal range and the hematologist and I can part ways.
I have my follow up appointment with the hematologist on Thursday. Still waiting for my insurance company to approve the additional testing that he wants to run. I am just hoping that the CBC will show that my white count is in a normal range and the hematologist and I can part ways.
Tuesday, 26 May 2009
The neck bone's connected to the...
I went and picked up my MRI report from my PCP today. I needed it to send into Aflac to receive payment under my Sickness Plan. I was also curious to see what exactly they had found. I am hoping when I see the neurologist that I will get to see my films too. I figure if you are going to pay 10k for pictures of your brain, you should at least get to see them. Heck, I might frame them at that price!
According to the findings I have an 8mm lesion in the left corpus callosum. That part of the brain is the largest area of white matter in the brain. The white matter is effected by demyelination that occurs in MS. The corpus callosum divides the hemispheres of the brain and coordinates communication between the two sides.
I also have an 11mm lesion posterior to the left lateral ventricle in the left parieto-occipital region of my brain. The parietal lobe plays roles in integrating sensory information from multiple locations in the body (guess that explains all my tingling sensations), the manipulation of objects and the knowledge of numbers and their relations. That last part made me laugh. Math has never been my "thing". I am blaming my poor little demyelinated 'mathy' nerve endings! I have to find the humor in this situation where I can.
Finally, I have a 6mm lesion in the posterior cervical cord at the c2-3 disc space. The c2-3 is higher in the neck, below the brain stem at the base of the skull. There is also a small bulge in my c5-6 space, but it is causing no significant canal stenosis.
So there you have it. A bunch of medical mumbo jumbo to let me know that my body has decided to chew on parts of my brain for a light snack. I feel oddly better knowing which parts of my brain are being munched on!
Who's on your team, who's on your team?
So when a crisis comes up in your life, do you have people to turn to? Not people to solve your problems. Not people to pick up the pieces. People who will walk beside you and share the burden. Love on you and listen to you.
I am so blessed to be surrounded by wonderful friends and family who are doing just that. I am still wrapping my brain around this diagnosis and what it all means, but I have been covered in love and prayers from around the world (literally) and I feel so blessed to have dozens of people who are walking through this with me.
They may not understand this any better than I do, but they are right there with me, encouraging me, sympathizing, listening and caring. And I couldn't ask for anything more.
So who is on your team? And more importantly, whose teams are you on?
If you have any encouragement from being united with Christ, if any comfort from his love, if any fellowship with the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and purpose. Philippians 2:1-2
Sunday, 24 May 2009
Either something is wrong or I am loosing my mind
In mid March I was running late for work (as usual) and was toweling off after a quick shower when I noticed that a band of skin under my breast bone felt.....weird. I looked in the mirror. No rash. I poked at it. No pain. It just felt like the skin had gone to sleep and was tingling. I chalked it up to a pinched nerve or sleeping funny and finished getting ready to head to the office.
The next day after my shower, I felt the same tingling. Three days later, still tingling. In fact now it was tingling all the time. All day long. I was busy and didn't have time to deal with it. I was leaving soon for a week in Mexico with one of my best girlfriends and figured it must be stress related from having to cram all my work in ahead of time.
April 1st arrived and the tingling had progressed to pain. It felt like someone had wrapped an ace bandage around the top of my ribs as tight as possible. It hurt to breathe. I was rubbing my stomach all day long. One of my co-workers begged me to call my Primary Care Physician. I was leaving for Mexico in 14 days. The last thing I needed was to be sick. I called my PCP's office and they had me come in that afternoon. My doctor was out, so I saw another doctor in the practice. He did a physical exam and drew blood. He assured me that it was probably a virus or a nerve issue and that we shouldn't worry too much about it. "I am sure we are not looking at anything like cancer, Parkinson's, MS or something serious." he told me.
Two days later I got a call that all my blood work was normal other than a mildly elevated white count. Call if I got worse or failed to improve, but otherwise we would assume it was a virus that would run its course. I figured the elevated white count and a virus would explain why I was so tired too. I figured that once I got out of the country and enjoyed some sun and relaxation, I would feel much better.
On April 15th we left for Puerta Vallarta. My hands and feet kept falling asleep on the plane. I figured I was dehydrated and really pushed a lot of water into my system the first 24 hours we were there. My stomach had finally stopped being numb all the time and I was on my first vacation in 5 years. It had to be stress and too much work. I just needed to relax.
On the 17th we went snorkeling. As I bent my neck forward to pull on my flippers, I felt an electrical current pulse through my body. I looked up in surprise and turned to my girlfriend to see if she had felt it too. Apparently not, since she was still getting into her wetsuit. I turned my attention back to the flippers and felt it again. Throughout the rest of the week I could produce the same result by pulling my chin down to my chest. The electrical pulse only lasted a second, but it was strange and alarming.
My hands were numb off and on for the rest of the trip as well. Thankfully it was a vacation and we had no scheduled agenda other than eat, sleep, swim, drink; repeat as necessary. I wasn't tired anymore, but I was also sleeping 8-10 hours a night and napping for 1-2 hours every afternoon. It was like I had sleeping sickness. I decided I was just really relaxed.
When I got home and wrapped my brain around working for a living again, I checked my voicemail and found a message from the doctors office. They wanted me to repeat the CBC panel. I went in, had the draw and once again my white count was elevated. No change in the past 3 weeks. They decided to refer me to a hematologist for further testing.
The hematologist was a fanatic about blood. I learned more about blood from him in the 3 hours we spent together than I ever did in biology class. He felt that my blood looked pretty normal, but he was concerned that my white count was STILL elevated 6 weeks after my first draw. He felt that we should run a special test to screen for myelomonocystic leukemia. He also ordered an MRI to, "rule out brain/spinal injury, tumors and MS". So I scheduled the appointment, bummed a Xanax off a girlfriend (hi, claustrophobic!) and spent 2.5 hours in a banging, clanging tube while being filled with magnetic waves and glow in the dark dye.
Two days later I began pestering the doctor for results. When I got his PA on the phone she said she would have to have the doctor call me back because he wanted to give me the results himself.
This can not be a good sign.
When the doctor called me back he said that there was no indication of tumors (whohoo!), no damage to the spinal cord other than a mildly bulging disc in my cervical area; which given the multiple car accidents I have been in, was not surprising and no big deal. But there were multiple lesions in both hemispheres of my brain and that I would need to get a referral to a neurologist.
Lesions? What lesions?
"Multiple Sclerosis. You have MS. The radiology report is very clear in its definitive diagnosis."
Not. what. I. wanted. to. hear.
Remember how we were ruling MS out? It wasn't on my list. Besides, I like my brain. Without lesions, thank you very much. And a chronic, incurable auto-immune disorder? Ummm, NO. No. NOOOOO! I want something we can fix. Something predictable. Something that will GO AWAY!
I just wanted a diagnosis. Not a life altering condition.
The next day after my shower, I felt the same tingling. Three days later, still tingling. In fact now it was tingling all the time. All day long. I was busy and didn't have time to deal with it. I was leaving soon for a week in Mexico with one of my best girlfriends and figured it must be stress related from having to cram all my work in ahead of time.
April 1st arrived and the tingling had progressed to pain. It felt like someone had wrapped an ace bandage around the top of my ribs as tight as possible. It hurt to breathe. I was rubbing my stomach all day long. One of my co-workers begged me to call my Primary Care Physician. I was leaving for Mexico in 14 days. The last thing I needed was to be sick. I called my PCP's office and they had me come in that afternoon. My doctor was out, so I saw another doctor in the practice. He did a physical exam and drew blood. He assured me that it was probably a virus or a nerve issue and that we shouldn't worry too much about it. "I am sure we are not looking at anything like cancer, Parkinson's, MS or something serious." he told me.
Two days later I got a call that all my blood work was normal other than a mildly elevated white count. Call if I got worse or failed to improve, but otherwise we would assume it was a virus that would run its course. I figured the elevated white count and a virus would explain why I was so tired too. I figured that once I got out of the country and enjoyed some sun and relaxation, I would feel much better.
On April 15th we left for Puerta Vallarta. My hands and feet kept falling asleep on the plane. I figured I was dehydrated and really pushed a lot of water into my system the first 24 hours we were there. My stomach had finally stopped being numb all the time and I was on my first vacation in 5 years. It had to be stress and too much work. I just needed to relax.
On the 17th we went snorkeling. As I bent my neck forward to pull on my flippers, I felt an electrical current pulse through my body. I looked up in surprise and turned to my girlfriend to see if she had felt it too. Apparently not, since she was still getting into her wetsuit. I turned my attention back to the flippers and felt it again. Throughout the rest of the week I could produce the same result by pulling my chin down to my chest. The electrical pulse only lasted a second, but it was strange and alarming.
My hands were numb off and on for the rest of the trip as well. Thankfully it was a vacation and we had no scheduled agenda other than eat, sleep, swim, drink; repeat as necessary. I wasn't tired anymore, but I was also sleeping 8-10 hours a night and napping for 1-2 hours every afternoon. It was like I had sleeping sickness. I decided I was just really relaxed.
When I got home and wrapped my brain around working for a living again, I checked my voicemail and found a message from the doctors office. They wanted me to repeat the CBC panel. I went in, had the draw and once again my white count was elevated. No change in the past 3 weeks. They decided to refer me to a hematologist for further testing.
The hematologist was a fanatic about blood. I learned more about blood from him in the 3 hours we spent together than I ever did in biology class. He felt that my blood looked pretty normal, but he was concerned that my white count was STILL elevated 6 weeks after my first draw. He felt that we should run a special test to screen for myelomonocystic leukemia. He also ordered an MRI to, "rule out brain/spinal injury, tumors and MS". So I scheduled the appointment, bummed a Xanax off a girlfriend (hi, claustrophobic!) and spent 2.5 hours in a banging, clanging tube while being filled with magnetic waves and glow in the dark dye.
Two days later I began pestering the doctor for results. When I got his PA on the phone she said she would have to have the doctor call me back because he wanted to give me the results himself.
This can not be a good sign.
When the doctor called me back he said that there was no indication of tumors (whohoo!), no damage to the spinal cord other than a mildly bulging disc in my cervical area; which given the multiple car accidents I have been in, was not surprising and no big deal. But there were multiple lesions in both hemispheres of my brain and that I would need to get a referral to a neurologist.
Lesions? What lesions?
"Multiple Sclerosis. You have MS. The radiology report is very clear in its definitive diagnosis."
Not. what. I. wanted. to. hear.
Remember how we were ruling MS out? It wasn't on my list. Besides, I like my brain. Without lesions, thank you very much. And a chronic, incurable auto-immune disorder? Ummm, NO. No. NOOOOO! I want something we can fix. Something predictable. Something that will GO AWAY!
I just wanted a diagnosis. Not a life altering condition.
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