Today was the fourth consecutive nap-free day -- yeayyy!
More good news: I'm down to one phlebotomy per week. We broke my record on Monday: 30 minutes to draw 1 pint.
My hematocrit is down to 52 (we're heading for 45), out of the danger zone.
Blood pressure back to good range; no more blood-shot eyes.
I started taking the chemo pills (HU) before bedtime and that seems to help me sleep at night (and therefore less drowsy during the day).
It's been two challenging months -- the symptoms, the tests, the diagnosis, and commencing treatment...
So much for which to be grateful: wonderfully supportive family and friends, attentive physicians and nurses, scientists who study stem cells, and better living through chemistry...
If you enjoy good health, please take a moment right now to breathe deeply and appreciate.
Keep the quality in your life... live, love and laugh!
Wednesday, November 04, 2009
Wednesday, October 28, 2009
It's official -- I do have a brain
Today was the only day this week without a medical appointment, but I did receive two bits of news.
First, Kaiser approved a referral to an MPD specialist at Emory University Hospital -- I'm very happy to be able to get the perspective of someone who works with a lot of patients with a myeloproliferative disorder.
The second news came in a phone call from my internist. The MRI & MRA done on my head and neck on Monday showed no clots (great news). But it does show white matter changes which could indicate demyelinating disease (multiple sclerosis). She referred me to a neurologist and I've got an appointment for December 2nd.
Hopefully we'll get some better insight to the headaches and blotchy vision that continues to disrupt my daily activities.
My blood pressure is under control and this provides great relief. EKG is normal and I'll continue to calibrate the blood pressure meds with my internist as the hematocrit improves with the phlebotomies and hydrea.
Tomorrow I'll be at Emory for a nuclear medicine test of the red blood cells.
Friday is phlebotomy day -- this will set me up for a great weekend!
Happy Halloween!
First, Kaiser approved a referral to an MPD specialist at Emory University Hospital -- I'm very happy to be able to get the perspective of someone who works with a lot of patients with a myeloproliferative disorder.
The second news came in a phone call from my internist. The MRI & MRA done on my head and neck on Monday showed no clots (great news). But it does show white matter changes which could indicate demyelinating disease (multiple sclerosis). She referred me to a neurologist and I've got an appointment for December 2nd.
Hopefully we'll get some better insight to the headaches and blotchy vision that continues to disrupt my daily activities.
My blood pressure is under control and this provides great relief. EKG is normal and I'll continue to calibrate the blood pressure meds with my internist as the hematocrit improves with the phlebotomies and hydrea.
Tomorrow I'll be at Emory for a nuclear medicine test of the red blood cells.
Friday is phlebotomy day -- this will set me up for a great weekend!
Happy Halloween!
Wednesday, October 14, 2009
We've Got a Plan and We're Working It
Robert and I met with my hematologist on Tuesday and established a course of action.
Since the HGB and hematocrit levels aren't falling very quickly, I'm going to continue with 2 phlebotomies a week and begin a regimine of 500 mg of hydrea (hydroxyurea or HU) daily.
My blood pressure is still too high (165/110) so I went back to the internist to check the dosage of the BP meds. Those have been adjusted, so it should be improving soon.
So today is my first day of the chemo and blood pressure meds with the warfarin (blood thinner) -- makes me feel old to have a handful of pills in the morning!
I am still easily tired and my vision is annoyingly blotchy -- this is most likely due to the high blood pressure I am told.
I attended the World Class Leaders reception for Leadership Gwinnett this evening -- It was so great to focus on something other than this illness!
The phases of dealing with a life altering illness are much better read about than experienced. It is tough to strike a healthy balance between reading everything one can find on the illness, treatments, side effects and clinical trials and work assignments and family life. All three must be squeezed between naps, which are no longer voluntary.
Last week, I felt an incredible sense of relief that there is a "name" and real cause for the extreme fatigue and other symptoms that have been gaining steam in recent months. It's not all in my head; I'm not a hypochondriac... funny how the self-doubts can mount when there are no answers.
After the relief came the overwhelming desire to fully understand the disease -- what EXACTLY is it, how does it happen, what happens next... mix one diagnosis with others and what do they mean?
Right now, I'm okay with developing a series of questions. Each answer seems to lead to three more questions.
I am so GRATEFUL that we have gifted humans who choose to study the sciences -- and never underestimate the importance stem cell research has on all our lives. The results of their persistent curiousity is already giving me more time.
Better living through chemistry!
peace,
m
Since the HGB and hematocrit levels aren't falling very quickly, I'm going to continue with 2 phlebotomies a week and begin a regimine of 500 mg of hydrea (hydroxyurea or HU) daily.
My blood pressure is still too high (165/110) so I went back to the internist to check the dosage of the BP meds. Those have been adjusted, so it should be improving soon.
So today is my first day of the chemo and blood pressure meds with the warfarin (blood thinner) -- makes me feel old to have a handful of pills in the morning!
I am still easily tired and my vision is annoyingly blotchy -- this is most likely due to the high blood pressure I am told.
I attended the World Class Leaders reception for Leadership Gwinnett this evening -- It was so great to focus on something other than this illness!
The phases of dealing with a life altering illness are much better read about than experienced. It is tough to strike a healthy balance between reading everything one can find on the illness, treatments, side effects and clinical trials and work assignments and family life. All three must be squeezed between naps, which are no longer voluntary.
Last week, I felt an incredible sense of relief that there is a "name" and real cause for the extreme fatigue and other symptoms that have been gaining steam in recent months. It's not all in my head; I'm not a hypochondriac... funny how the self-doubts can mount when there are no answers.
After the relief came the overwhelming desire to fully understand the disease -- what EXACTLY is it, how does it happen, what happens next... mix one diagnosis with others and what do they mean?
Right now, I'm okay with developing a series of questions. Each answer seems to lead to three more questions.
I am so GRATEFUL that we have gifted humans who choose to study the sciences -- and never underestimate the importance stem cell research has on all our lives. The results of their persistent curiousity is already giving me more time.
Better living through chemistry!
peace,
m
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