Thursday, December 24, 2009
This Christmas season, living with Polycythemia Vera (www.mpdfoundation.org) and its lovely side effects, I'm forced to re-set expectations and focus on getting and maintaining a reasonable level of healthiness. And guess what? The earth is still rotating on its axis even though I'm doing a fraction of what I've done in past years.
Searching for the bright side of living with a chronic, invisible illness, I've found a few:
1. Being immunosuppressed is a great reason to avoid crowded shopping areas and people you don't care to see. Getting a bargain is not worth getting a virus. And most people do not wash their hands enough!
2. Fatigue/exhaustion during the day provides opportunities for mandatory "cat naps." Ahhh... the oft-misunderstood delight of a brief respite during the day!
3. Family and friends are impressed with your accomplishments that previously would have barely attracted notice. So glad you came to that meeting! Dinner was great, mom! Thanks for making that extra trip when I forgot my project at home...
4. Someone else (like a wonderful teenage daughter) will do a lot of the gift wrapping that caused me great last-minute stress in previous years.
5. You get to know all the lab techs, nurses, and physicians with weekly/bi-weekly visits. You are not just another nameless co-pay in the health care industrial complex.
6. "Chemo brain" is a great excuse for forgetfulness. What was I going to tell you? Why did I open this drawer? Didn't I tell you ...?
7. While you don't get preferred parking spots, you can "fake it" pretty well and decide how public you want the illness to be. Since you don't look "sick" people don't assume the worst and bombard you with knowing looks of pity or fear.
8. You appreciate the "good" days so much more than ever before -- being able to go places, work, be an active parent and spouse, be a friend... No more taking healthy life for granted!
9. Side effects are just another way of forcing you to to pay attention to the present. Annoying? Painful? Frustrating? Yes! Yes! Yes! Living through this in the moment, step by step, is part of the journey.
10. Chronic illness is like a loofah sponge -- it forces you to shed the flakes from your life. Life is too short and time is too precious to spend on people / activities / thoughts that do not contribute positively.
So there's my Top Ten benefits of living with a chronic illness.
Please add others ... I'm interested to learn from you, too!
Sending best wishes for a Happy Hannakah, Merry Christmas, Sublime Solstice, Happy Kwanzaa, and all other celebrations you enjoy this time of year.
with peace and love,
Tuesday, November 17, 2009
Wednesday, November 04, 2009
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, October 28, 2009
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!
Wednesday, October 14, 2009
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!
Wednesday, October 07, 2009
I'm still tired by normal standards, but compared to the flat out exhaustion I've felt for so long, this is wonderful! I've got to remember to pace myself... vision fuzzy -- not good when applying eye makeup :) ...
okay -- it's 10 a.m. and I'd really like a nap right now. But I'm heading back to Kaiser for my second phlebotomy (11 a.m. appt).
3:00 p.m. -- Today's visit was an adventure -- we got a pint of blood in about 50 minutes today, thanks to the aspirin I took this morning. My blood pressure is too high (170/112), so I got to meet with a cardiologist, too. He started me on a diuretic and blood pressure medicine. He believes the high blood pressure is a caused by the blood issues. (I'm probably one of the only overweight people whose BP is ordinarily normal to low).
good news: The hematocrit fell from 69.1 to 63.4 after the first phlebotemy; should fall more after today's blood draw.
Still waiting for more lab results. Next phlebotomy is scheduled for Monday.
How does that song go? "the waiting is the hardest part..."
As I sat there today and saw patients come in for their chemotherapy treatments, I'm reminded to be grateful for all the good things in my life. I am a lucky girl, indeed!
Life is one big adventure!
Tuesday, October 06, 2009
I was so relieved when nurse Charlotte presented me with a clean needle instead of a bucket of leeches!
Two years after an unexpected and frightening surgery, I am back in the learning mode about blood. I've been taking warfarin (aka Coumadin) since October, 2007. After mesentary venous thrombosis and intestinal ischemia, the incredible Dr. David Brodeur tested and determined that my blood has Factor XII and Protein C deficiencies. These indicate that my blood likes to clot (hyper-coagulable); hence, the warfarin, which is a blood thinner.
[interesting factoid: warfarin is also known as rat poison. when rats eat the warfarin placed in bait, it causes them to bleed internally until they die -- pleasant thought, ehh?]
Today, for reasons unknown at this time, my bone marrow is producing too many red blood cells (RBCs) and they are too thick, creating a clotting risk. While I thought the warfarin protected me from all blood clots, I learned today that the drug affects the platelets, not the RBCs.
In researching (beyond Google) blood disorders, I found little helpful information from the patient perspective for the blood disorders that I manage. Those include alpha thalassemia trait, Factor XII and Protein C deficiencies, and way too many red blood cells (which could prove to be polycythemia vera).
Polycythemia vera is quite treatable, though not curable.
I’m working with a hematologist and we are awaiting results from blood drawn yesterday and today.
(I had to go back in today because the blood collected yesterday was so thick that they couldn’t get enough serum from the spinning they do).
Because the numbers were too high on the test results that did come back, I was “phlebotomized” this afternoon. They removed 1 pint (500 mL) of blood – it took more than an hour to get that out (should normally take 20-30 minutes). After removing the blood, they ran more tests.
Tomorrow, I will be phlebotomized again, followed by more tests. Maybe another round on Thursday or Friday, depending on how well the hematocrit falls. The objective is to get the hematocrit level down from 69 to 45-50.
We knew that my body was producing higher than normal RBCs and that they are irregular in shape (that’s the alpha thalassemia trait). But the numbers have increased a lot over the last few weeks which has caused other problems.
The hematologist is testing to confirm whether I have the condition called Polycythemia Vera. http://www.mayoclinic.com/health/polycythemia-vera/DS00919
It could be another week before the specialty test results are back. She will most likely send me to Emory for a bone marrow test as well. [Remember that our blood is made by the bone marrow – and mine seems to have gone a little wild with the RBC production].
I must say that I feel better emotionally that we are close to nailing a medical reason for the chronic fatigue, dizzy spells, etc. that have kept me off my “A” game for the past month and a half. (I knew something was wrong when my 2 mugs of coffee in the morning had no measureable impact on me).
I am going to share the journey and the information I discover, in hopes that others can benefit and also contribute their information for a broader learning experience for us all.
Every day is an adventure!
Friday, March 06, 2009
1. You know the ups and downs are coming, but they still manage to upset your stomach.
2. If you don't strap youself in, you'll be in for emotional bumps and bruises.
3. You feel like raising your hands in the air and screaming out loud.
4. Squeals of delight can turn into shrieks of fear for no apparent reason.
5. The person next to you goes from being "cool" to grabbing onto you for protection in a nanosecond.
6. Just when you think everything is level and calm, there is another dive around the corner.
7. You feel a bit off balance when the ride is over, but you'd do it all over again!
8. The ride creates fond memories and funny stories for everyone.
Add your examples here...
Sunday, February 15, 2009
I read "What to Expect When You're Expecting" and "Your Pregnancy Week by Week" from cover to cover for both of my pregnancies. Given that my daughter was 7 months old when I became pregnant with her brother, this was quite a rapid re-read for me. (I rarely read anything twice -- except for recipes).
I consumed parenting books like they were bloomin' onions and beer (favorites of mine) for their first six or seven years. How does each child track with their developmental milestones? I wasn't so concerned with them keeping pace with the Jones', but I was vigilant to ensure that hubby and I do nothing to impede their progress.
Nothing -- even teenager stories from friends whose kids are further along the development continuum -- prepared me for going through middle school again.
The Teenage Brain has moved into our home. Here's a recent example:
Home from school at 5:00 p.m.
Son: "Hey mom -- can I go play tennis with (insert friend's name here)?
Mom: "What homework do you have?"
Mom: "Are you sure? Nothing due tomorrow?"
Mom: "Okay. You can go, but you have to be home by 7:30 pm."
Son: "Thanks, mom! You're the best!"
Fast forward to 9:00 p.m.
Mom: "Hey son, go upstairs and take a shower before you go to bed."
Son: "I can't go to bed now. I have to study for my social studies test."
Mom: "When is the social studies test?"
Son: "Tomorrow." (said with an earnest tone)
Mom: "TOMORROW? Are you kidding me? You told me you didn't have any homework tonight!"
Son: "I don't have HOMEWORK tonight. I just have to study." (again, completely earnest; no sly tone)
Mom: "What part of "study" isn't homework, son?"
Son: "Homework is an assignment that is due. Studying is just reading the book and notes."
Mom: "What about WordMasters and compilation units?"
Son: "Those are homework."
Mom: "So how much time do you think you will need to study tonight in order to get an A on the test tomorrow?"
Son: "I don't need to get an A on the test. All I need is an 88 and I'll still keep my A average."
Mom inhales deeply and exhales slowly. Why is hubby out of town right now?
Mom: "Son, we have two problems here. First, studying IS homework. I feel you misled me this afternoon so you could play tennis. Second, it doesn't matter what your average will be, you are expected to get an A on your social studies test. You are smart and capable. You have 50 minutes to study, get a shower, brush your teeth and get in bed."
Son: "But mom..."
Mom: "No 'A', no tennis. You are good at math -- you can figure out how to accomplish all this in the next 50 minutes."
No one told me that investigative interview techniques would be required to get full information from my kid.
Another lesson learned... good thing he's adorable!