Dr. Silverman and Michele's uterus...
Hi Friends!
I'm trying to get back on the blogwagon -- so here's what's going on today. I just sent the kids and Bill off to school and work, and I am waiting for Annie (my Alice) to come and drive me to see the gynecologist, Dr. Silverman. (Always fun, isn't it ladies???) Today I need to have a uterine biopsy done as I've had some unexplained bleeding after menopause and apparently my uterine lining is much thicker than it should be. I am followed closely by the gynecologist, because the chemotherapy (Rituxan) which is currently saving me from my lupus -- ironically puts me at increased risk for breast, cervical, uterine, and bladder cancer.
So, that will be our fun outing for today. I am really not feeling well. Super bad lupus headache and chest pain. So, yeah -- why not throw in messing with my uterus??? Wednesday I go back to the cardiologist and to see Dr. Cohen. And Thursday I am doing my second cycle of Rituxan at Los Robles. And then on Monday, the 22nd, I am seeing the neurologist for brain testing. I also have a cystoscopy scheduled with the urologist that day. If you've never had a camera put into your bladder just for fun -- well, that's probably a good thing:-) I don't recommend it, but I do it cuz it would be silly to die of bladder cancer which is usually easily treatable.
Bill is looking for a replacement vehicle to buy since I torched our Expedition. We have 2 more weeks left with our rental of an Expedition -- so hopefully, he'll find something soon...
More tomorrow, I hope ---
Much Love,
Shel
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Tuesday, November 16, 2010
Sunday, November 14, 2010
MAYBE IT WAS MORE THAN JUST A BUMP IN THE ROAD???
Hi Friends!
It was more like a fiery crash of the road...and then my truck exploded...
There's a reason I haven't blogged for a while. First, I came down with pericarditis and was hospitalized. Basically the lupus attacked my pericardium (the lining around my heart) causing severe pain, swelling, and some fluid built up. My blood pressure and heart rate were super-high. I spent several days in the hospital on high-dose steroids, anti-inflammatories and heavy-duty pain meds. I was then sent home to follow up out-patient. Now I'm used to this type of thing -- lupus is a systemic disease in that it attacks all of your systems. So, I needed to follow up with several specialists...
And then on my way from one doctor to the next in Thousand Oaks -- and yes, I was driving myself, and yes I was cleared to do so, I appear to have suffered a catatonic seizure while driving. I became disoriented, confused, and was completely unable to move. I was in the SUV alone when it left Rolling Oaks Drive, shearing off a electrical transformer and crashing at high speed before the vehicle burnt to the ground while I watched. It was rather dramatic to say the least. I had covered my day in prayer and God truly sent angels to protect me. I was pulled out of our Expedition, and put in a lady's car who then drove me away from the fire. We waited in front of BorderLine for the Los Robles ambulance to come get me, and we called Bill to tell him I was OK considering what had just happened.
I suffered chemical burns to my arms from the airbags, bruising from the seat belt, and a concussion from my head hitting the seat back and the steering wheel. But thank God, I didn't break anything (shocking considering my osteoporosis) or have a problems with my port which was hooked up with a needle for chemo/testing. It nicely stayed in place.
So, the basic concern is that I seem to be having seizures -- not a good sign for someone with a history of lupus attacking the brain. Obviously my days of driving are over, and we're just glad that a truck can be replaced. I was immediately switched off of my methotrexate (that remission was way too short if you ask me!!!) and put back on the more aggressive Rituxan chemotherapy. I have had home health nursing here providing me with IV steroids and hydrations and monitoring my general health, because I really really really don't want to go back to the hospital.
Bill's parents came and stayed with us for a week. They were a huge help and a fun distraction for the kids. We celebrated my 40th birthday on Friday, Nov. 12 -- and it felt like a huge accomplishment.
I really don't know much except for the lupus is once again in full flare. Tomorrow I am meeting with the cardiologist to discuss its effects on my heart. Tuesday I am having a uterine biopsy, because of some female abnormalities. Wednesday I meet with Dr. Cohen to discuss and plan out our lupus kick-butt treatment. And Thursday, I am scheduled for Rituxan (chemo) at Los Robles. I am also waiting to hear when the neurologist can squeeze me in to discuss my brain issues... it's almost funny:-0
Anyway, that's what I know...meanwhile I am supposed to be resting in bed. And since Bill surprised me with a laptop for my birthday -- I now never need to leave my room...I have been allowed to take a short walk up and down my street each day so that I don't have circulatory issues...but other than that -- my chest and head hurt too much to do anything else.
I'll blog again when I know something pertinent. The pictures of the accident and my 40th birthday are up on FB. Sorry, but I do not have the energy to post pictures on this blog anymore.
Much Love,
Michele
It was more like a fiery crash of the road...and then my truck exploded...
There's a reason I haven't blogged for a while. First, I came down with pericarditis and was hospitalized. Basically the lupus attacked my pericardium (the lining around my heart) causing severe pain, swelling, and some fluid built up. My blood pressure and heart rate were super-high. I spent several days in the hospital on high-dose steroids, anti-inflammatories and heavy-duty pain meds. I was then sent home to follow up out-patient. Now I'm used to this type of thing -- lupus is a systemic disease in that it attacks all of your systems. So, I needed to follow up with several specialists...
And then on my way from one doctor to the next in Thousand Oaks -- and yes, I was driving myself, and yes I was cleared to do so, I appear to have suffered a catatonic seizure while driving. I became disoriented, confused, and was completely unable to move. I was in the SUV alone when it left Rolling Oaks Drive, shearing off a electrical transformer and crashing at high speed before the vehicle burnt to the ground while I watched. It was rather dramatic to say the least. I had covered my day in prayer and God truly sent angels to protect me. I was pulled out of our Expedition, and put in a lady's car who then drove me away from the fire. We waited in front of BorderLine for the Los Robles ambulance to come get me, and we called Bill to tell him I was OK considering what had just happened.
I suffered chemical burns to my arms from the airbags, bruising from the seat belt, and a concussion from my head hitting the seat back and the steering wheel. But thank God, I didn't break anything (shocking considering my osteoporosis) or have a problems with my port which was hooked up with a needle for chemo/testing. It nicely stayed in place.
So, the basic concern is that I seem to be having seizures -- not a good sign for someone with a history of lupus attacking the brain. Obviously my days of driving are over, and we're just glad that a truck can be replaced. I was immediately switched off of my methotrexate (that remission was way too short if you ask me!!!) and put back on the more aggressive Rituxan chemotherapy. I have had home health nursing here providing me with IV steroids and hydrations and monitoring my general health, because I really really really don't want to go back to the hospital.
Bill's parents came and stayed with us for a week. They were a huge help and a fun distraction for the kids. We celebrated my 40th birthday on Friday, Nov. 12 -- and it felt like a huge accomplishment.
I really don't know much except for the lupus is once again in full flare. Tomorrow I am meeting with the cardiologist to discuss its effects on my heart. Tuesday I am having a uterine biopsy, because of some female abnormalities. Wednesday I meet with Dr. Cohen to discuss and plan out our lupus kick-butt treatment. And Thursday, I am scheduled for Rituxan (chemo) at Los Robles. I am also waiting to hear when the neurologist can squeeze me in to discuss my brain issues... it's almost funny:-0
Anyway, that's what I know...meanwhile I am supposed to be resting in bed. And since Bill surprised me with a laptop for my birthday -- I now never need to leave my room...I have been allowed to take a short walk up and down my street each day so that I don't have circulatory issues...but other than that -- my chest and head hurt too much to do anything else.
I'll blog again when I know something pertinent. The pictures of the accident and my 40th birthday are up on FB. Sorry, but I do not have the energy to post pictures on this blog anymore.
Much Love,
Michele
Tuesday, October 12, 2010
Cameron's Perspective of the loopy journey...
Hi Friends!
Cam wrote this essay for his English class. I thought he could do my blog today since he expressed his feelings so well.
Love,
Shel
Cameron Bland, 10/12/10
In this statement, I will be telling you about a life-changing experience. What happened to my family and me was traumatic. In many cases, the family might have split up and turned against each other. Instead our family learned to pull together, and I came out of the experience a better person. About three years ago, my Mom got very sick. She developed lupus, which is a disease in which your white-blood cells attack your vital organs such as your heart, your brain, your lungs, and your kidneys instead of protecting your body, as they should.
Before this happened, my Mom was a stay-at-home Mom. She was very energetic and would practically do all the household chores for us. After she got sick, she was in and out of the hospital all the time. When she was home, she was in bed most of the time. I have a large family. Besides my Mom and Dad, there are four children in our family. I have one younger sister named Molly who was eleven years old at the time. I have two younger brothers. When my Mom got sick, Nathaniel was nine years old and Isaac was five years old. I was fourteen years old when it happened and just starting high school.
Before this happened, I always thought this could happen to someone else but not to me. Then before I knew what was happening, my whole life changed. Instead of my Mom taking care of me, I began to help take care of her. Sometimes I had to stay home from school to watch my little brothers when she had a doctor’s appointment or was very sick from her chemotherapy. My Dad has to travel for work at times, and when he did I took on a lot of responsibility.
My Mom was going through chemotherapy. I had to be very careful because if I got even remotely sick, she could get deathly sick. She had no immune system to protect her body against even a common cold. We learned to wash our hands and sanitize the house against germs. This helped, but she still caught infections sometimes. I felt stressed out and very sad when she kept going to the hospital.
We were short on money sometimes, because of all the hospital stays and medications. I couldn’t afford the latest I-pods, cell phones, and video games that other teenagers had. Some bullies even made fun of me for this. My parents weren’t able to pay me allowance anymore even though I now did a lot of household chores. I learned to make do with less.
Many people were exceptionally kind to me during this time. My teachers understood why I had to miss school and supported me during this time. I have a family friend named Annie who helped a lot. She is sort of like an aunt to me. She kept things positive with her cheerful personality. No matter how stressful things were, I knew that when Annie came things would be fun. She came and helped a lot. She often came “bearing gifts” and stayed for a week or two.
It’s been 3 years now, and my Mom is doing much better. I am proud of how I handled this experience, and I think it taught me valuable life lessons. First of all, life isn’t fair. If it were, my Mom wouldn’t be sick. I also learned that the illness of one person in a family affects everyone. At fourteen, I had to grow up fast and my younger siblings had to grow up faster. I now have the ability to supervise others and mediate conflicts, thanks to my arguing brothers. I learned quickly how to prevent the spread of illness by taking care of myself. I learned how to keep calm even when stressed. I learned to be content with what I had rather than always wanting more. I never knew how nice other people could be, and it inspires me to be that nice. In conclusion, my Mom’s illness taught me important life skills that will help me to succeed in college and beyond.
***And I'll say it again, I have the best kids in the world:-)
Cam wrote this essay for his English class. I thought he could do my blog today since he expressed his feelings so well.
Love,
Shel
Cameron Bland, 10/12/10
In this statement, I will be telling you about a life-changing experience. What happened to my family and me was traumatic. In many cases, the family might have split up and turned against each other. Instead our family learned to pull together, and I came out of the experience a better person. About three years ago, my Mom got very sick. She developed lupus, which is a disease in which your white-blood cells attack your vital organs such as your heart, your brain, your lungs, and your kidneys instead of protecting your body, as they should.
Before this happened, my Mom was a stay-at-home Mom. She was very energetic and would practically do all the household chores for us. After she got sick, she was in and out of the hospital all the time. When she was home, she was in bed most of the time. I have a large family. Besides my Mom and Dad, there are four children in our family. I have one younger sister named Molly who was eleven years old at the time. I have two younger brothers. When my Mom got sick, Nathaniel was nine years old and Isaac was five years old. I was fourteen years old when it happened and just starting high school.
Before this happened, I always thought this could happen to someone else but not to me. Then before I knew what was happening, my whole life changed. Instead of my Mom taking care of me, I began to help take care of her. Sometimes I had to stay home from school to watch my little brothers when she had a doctor’s appointment or was very sick from her chemotherapy. My Dad has to travel for work at times, and when he did I took on a lot of responsibility.
My Mom was going through chemotherapy. I had to be very careful because if I got even remotely sick, she could get deathly sick. She had no immune system to protect her body against even a common cold. We learned to wash our hands and sanitize the house against germs. This helped, but she still caught infections sometimes. I felt stressed out and very sad when she kept going to the hospital.
We were short on money sometimes, because of all the hospital stays and medications. I couldn’t afford the latest I-pods, cell phones, and video games that other teenagers had. Some bullies even made fun of me for this. My parents weren’t able to pay me allowance anymore even though I now did a lot of household chores. I learned to make do with less.
Many people were exceptionally kind to me during this time. My teachers understood why I had to miss school and supported me during this time. I have a family friend named Annie who helped a lot. She is sort of like an aunt to me. She kept things positive with her cheerful personality. No matter how stressful things were, I knew that when Annie came things would be fun. She came and helped a lot. She often came “bearing gifts” and stayed for a week or two.
It’s been 3 years now, and my Mom is doing much better. I am proud of how I handled this experience, and I think it taught me valuable life lessons. First of all, life isn’t fair. If it were, my Mom wouldn’t be sick. I also learned that the illness of one person in a family affects everyone. At fourteen, I had to grow up fast and my younger siblings had to grow up faster. I now have the ability to supervise others and mediate conflicts, thanks to my arguing brothers. I learned quickly how to prevent the spread of illness by taking care of myself. I learned how to keep calm even when stressed. I learned to be content with what I had rather than always wanting more. I never knew how nice other people could be, and it inspires me to be that nice. In conclusion, my Mom’s illness taught me important life skills that will help me to succeed in college and beyond.
***And I'll say it again, I have the best kids in the world:-)
Wednesday, September 29, 2010
A BUMP IN THE ROAD...
Hi Friends,
I couldn't blog yesterday because yesterday was crazy. The high of getting some good news from Dr. Cohen Monday morning was overshadowed by the sounds of children coughing and crying and having fevers late Monday - early Tuesday morning. So, I got up Tuesday morning and instead of driving to T.O. to get my chemo meds -- I drove Cam and Isaac to Urgent Care. Nate stayed home. Bill went to work. Molly went to school.
Well, I got to Urgent Care and was immediately surrounded by a full waiting room of puking, coughing, sneezing, contagious people. I immediately asked for a face mask to maybe protect myself a bit, and then I was stared at as if I was the contagious person.
I filled out all the paperwork, and waited -- and we finally got in and saw a very nice doctor. I don't know if it helped -- but they put me in the coldest room that they NEVER use and they sprayed the room with disinfectant before I came in. It's enough that I've already been exposed to my kids -- didn't really need more.
Cam and Isaac have strep throat. And while we were meeting with the doctor, I received the cell phone call that Molly was sick and needed to be picked up from school. The doctor said she didn't want me to have to come back and she was nice enough to write Molly a prescription without seeing her. It was pretty much a no-brainer that she had strep...
So, we left Urgent Care around noon, picked up Molly at school -- and I took all the sicklies home, fed them lunch, medicated their symptoms, and left for Thousand Oaks. I drove to my favorite pharmacy and picked up my chemo meds with no problem from Rajiv. He also filled the prescriptions for my kids, and told me to call Dr. Cohen about the strep. At the same time, the doctor from Urgent Care called my cell to say she looked again at the strep test and it was really bad -- so "you need to call your doctor, because I've been thinking about you and I'm worried..." Thanks Rajiv and new doctor -- I'm concerned, too...
So, I drove back to Oxnard and medicated everyone with their antibiotics and Cam is taking cough medicine with codeine. He's hugging me a lot -- SO, I for one, like the codeine:-) I called Dr. Cohen and he agreed we needed to medicate me preventatively... because by that time I had a slight sore throat and my chest hurt, and for me -- everything always turns into pneumonia. By that time, Bill was on his way home from work and off I went to CVS to pick up my antibiotics. I started those last night and my throat already feels better. The kids are looking somewhat better, and I'm hoping Cam and Molly can go back to school tomorrow + tomorrow night is Open House.
For today we've all been sleeping, resting, and trying to get better. I'm hoping Nate and Bill will escape the illness...that the other kids get better...and that this doesn't interfere with my shot in the butt this weekend...Thank goodness for the B-12 shot I got on Monday as it's helping with energy:-)
Much Love,
Michele
I couldn't blog yesterday because yesterday was crazy. The high of getting some good news from Dr. Cohen Monday morning was overshadowed by the sounds of children coughing and crying and having fevers late Monday - early Tuesday morning. So, I got up Tuesday morning and instead of driving to T.O. to get my chemo meds -- I drove Cam and Isaac to Urgent Care. Nate stayed home. Bill went to work. Molly went to school.
Well, I got to Urgent Care and was immediately surrounded by a full waiting room of puking, coughing, sneezing, contagious people. I immediately asked for a face mask to maybe protect myself a bit, and then I was stared at as if I was the contagious person.
I filled out all the paperwork, and waited -- and we finally got in and saw a very nice doctor. I don't know if it helped -- but they put me in the coldest room that they NEVER use and they sprayed the room with disinfectant before I came in. It's enough that I've already been exposed to my kids -- didn't really need more.
Cam and Isaac have strep throat. And while we were meeting with the doctor, I received the cell phone call that Molly was sick and needed to be picked up from school. The doctor said she didn't want me to have to come back and she was nice enough to write Molly a prescription without seeing her. It was pretty much a no-brainer that she had strep...
So, we left Urgent Care around noon, picked up Molly at school -- and I took all the sicklies home, fed them lunch, medicated their symptoms, and left for Thousand Oaks. I drove to my favorite pharmacy and picked up my chemo meds with no problem from Rajiv. He also filled the prescriptions for my kids, and told me to call Dr. Cohen about the strep. At the same time, the doctor from Urgent Care called my cell to say she looked again at the strep test and it was really bad -- so "you need to call your doctor, because I've been thinking about you and I'm worried..." Thanks Rajiv and new doctor -- I'm concerned, too...
So, I drove back to Oxnard and medicated everyone with their antibiotics and Cam is taking cough medicine with codeine. He's hugging me a lot -- SO, I for one, like the codeine:-) I called Dr. Cohen and he agreed we needed to medicate me preventatively... because by that time I had a slight sore throat and my chest hurt, and for me -- everything always turns into pneumonia. By that time, Bill was on his way home from work and off I went to CVS to pick up my antibiotics. I started those last night and my throat already feels better. The kids are looking somewhat better, and I'm hoping Cam and Molly can go back to school tomorrow + tomorrow night is Open House.
For today we've all been sleeping, resting, and trying to get better. I'm hoping Nate and Bill will escape the illness...that the other kids get better...and that this doesn't interfere with my shot in the butt this weekend...Thank goodness for the B-12 shot I got on Monday as it's helping with energy:-)
Much Love,
Michele
Monday, September 27, 2010
Visit to My DD (Dear Doctor)
Hi Friends,
I saw Doctor Cohen today and he was a real pick-me-up:-) He agrees that the methotrexate is working, and I can take it for a very long time. And I don't have to do the chemo infusion of Rituxan that I was scheduled for this month. So happy day for me AND since the methotrexate in pill form is making me so pukey...I get to switch to a shot form. Thank God I have a sweet husband who has no problem shooting me up (with legal drugs of course), so I am golden. Never thought I'd be so happy to get a shot in my butt -- a real pain in the ass, for most people -- but not for me. And because it's a shot, it's supposed to bypass your stomach, which should be helpful. I also got more percocet and permission to stay on it forever if necessary. However, since it takes 6 months for the methotrexate to achieve its complete effects -- I'm hopefully going to continue to get better and be able to go down or maybe even completely get off it at some point.
So, the only glitch today was getting the RX filled for all the shots. I spent an hour at CVS, and ended up calling Dr. Cohen on his cell phone and having him talk to the pharmacist. Still too much confusion, because it's a larger dose than they're used to giving. So, tomorrow, I am going to see Rajiv in Thousand Oaks -- he's the pharmacist in Dr. Cohen's old office building...and Dr. Cohen and I decided it will work better to have him do it. They sure make us sick people work to get chemo drugs...I mean do they really have a problem with people coming in and wanting them? Trust me, they're good for staying alive -- but not much fun:-) So back to Thousand Oaks tomorrow -- I am going to go first thing after I wake up, and then since that will probably take forever -- I'll come home and sleep after the outing. And I'll feel better knowing that the drugs are here for my Saturday shot. Cameron is still sick enough to stay home from school, but well enough to be my substitute teacher while I'm off on my outing.
So, good night for now. According to Dr. Cohen, I need to be OK with a few bumps in the road -- but I'm hoping for smoother sailing for now...
Much Love,
Michele
I saw Doctor Cohen today and he was a real pick-me-up:-) He agrees that the methotrexate is working, and I can take it for a very long time. And I don't have to do the chemo infusion of Rituxan that I was scheduled for this month. So happy day for me AND since the methotrexate in pill form is making me so pukey...I get to switch to a shot form. Thank God I have a sweet husband who has no problem shooting me up (with legal drugs of course), so I am golden. Never thought I'd be so happy to get a shot in my butt -- a real pain in the ass, for most people -- but not for me. And because it's a shot, it's supposed to bypass your stomach, which should be helpful. I also got more percocet and permission to stay on it forever if necessary. However, since it takes 6 months for the methotrexate to achieve its complete effects -- I'm hopefully going to continue to get better and be able to go down or maybe even completely get off it at some point.
So, the only glitch today was getting the RX filled for all the shots. I spent an hour at CVS, and ended up calling Dr. Cohen on his cell phone and having him talk to the pharmacist. Still too much confusion, because it's a larger dose than they're used to giving. So, tomorrow, I am going to see Rajiv in Thousand Oaks -- he's the pharmacist in Dr. Cohen's old office building...and Dr. Cohen and I decided it will work better to have him do it. They sure make us sick people work to get chemo drugs...I mean do they really have a problem with people coming in and wanting them? Trust me, they're good for staying alive -- but not much fun:-) So back to Thousand Oaks tomorrow -- I am going to go first thing after I wake up, and then since that will probably take forever -- I'll come home and sleep after the outing. And I'll feel better knowing that the drugs are here for my Saturday shot. Cameron is still sick enough to stay home from school, but well enough to be my substitute teacher while I'm off on my outing.
So, good night for now. According to Dr. Cohen, I need to be OK with a few bumps in the road -- but I'm hoping for smoother sailing for now...
Much Love,
Michele
"I'm not crazy..."
"I've just been in a very bad mood for the past 40 years."
Hi Friends!
Yes, I watched Steel Magnolias yesterday. I also watched Outsourced, Sister Act, Dead Man Walking, GI Jane and a bunch of other movies this weekend. I watched movie after movie while laying in bed. I was trying to take my mind off the internal war going on in my body. Saturday and Sunday were miserable -- I was so sick that I questioned my decision to do chemo at all. I was so sick that while my 14 year old daughter helped me take a bath, I questioned whether this time of my life was just a bad dream. Molly...She's the best nurse ever -- better than any "real" nurse I've ever had, but I'm her Mom and I worry. So I asked Molly if it's hard to have a sick Mom. And she honestly replied that it is, because she has a lot of responsibility -- but that she doesn't mind. And she told me that it's OK to not do the chemo. She doesn't know what she'd do if she were me...Sometimes I don't know what I'd do if I were me, and I am. I get it...
By the end of Sunday, it was better...not good, but better. I was able to move from my bed to the living room sofa. Bill made blueberry pancakes for dinner. I used to make dinner. I started the tradition of having breakfast for dinner of Sunday years ago back when I grocery shopped, cooked, cleaned and exercised... The pancakes were good...I kept them down, along with some rice, gatorade and popsicles. Now it's Hurray for me...I can eat:-)
By the end of the night, I was able to go to bed and snuggle up with SuperMan and actually sleep. Once again, SuperMan came and saved the day, catching Lois Lane as she was tumbling wildly toward the ground...
Today Bill went to work, and Molly went to school. Cam is still home sick with the same flu that I have. I wish that I could take care of him, not that a 17 year old "needs" taking care of...but it's a Mom thing, I guess. Nate and Isaac have routines and are able to learn and grow without me "supervising their learning" for today...I feel Ok today, but I am aware that if I push it -- I will start tumbling again. For today, I'll take it easy...call my friends, go see Dr. Cohen this afternoon.
A lot of people ask how I do it...I get it, I asked that about other people when they were sick. I do it, one step at a time, one moment at a time...I do it because it's the road I've been placed on. On good days, I do it with joy. On bad days, I do it while bitching. But what's important is that I do it...I've tried to quit on several occasions and God hasn't accepted my resignation. My family still needs me. And I still have more to learn.
So for now, I'm still on the sandy, beach road -- good, ocean-views and I'm not the driver, but thanks to all who are driving for me right now...
Much Love,
Michele
Hi Friends!
Yes, I watched Steel Magnolias yesterday. I also watched Outsourced, Sister Act, Dead Man Walking, GI Jane and a bunch of other movies this weekend. I watched movie after movie while laying in bed. I was trying to take my mind off the internal war going on in my body. Saturday and Sunday were miserable -- I was so sick that I questioned my decision to do chemo at all. I was so sick that while my 14 year old daughter helped me take a bath, I questioned whether this time of my life was just a bad dream. Molly...She's the best nurse ever -- better than any "real" nurse I've ever had, but I'm her Mom and I worry. So I asked Molly if it's hard to have a sick Mom. And she honestly replied that it is, because she has a lot of responsibility -- but that she doesn't mind. And she told me that it's OK to not do the chemo. She doesn't know what she'd do if she were me...Sometimes I don't know what I'd do if I were me, and I am. I get it...
By the end of Sunday, it was better...not good, but better. I was able to move from my bed to the living room sofa. Bill made blueberry pancakes for dinner. I used to make dinner. I started the tradition of having breakfast for dinner of Sunday years ago back when I grocery shopped, cooked, cleaned and exercised... The pancakes were good...I kept them down, along with some rice, gatorade and popsicles. Now it's Hurray for me...I can eat:-)
By the end of the night, I was able to go to bed and snuggle up with SuperMan and actually sleep. Once again, SuperMan came and saved the day, catching Lois Lane as she was tumbling wildly toward the ground...
Today Bill went to work, and Molly went to school. Cam is still home sick with the same flu that I have. I wish that I could take care of him, not that a 17 year old "needs" taking care of...but it's a Mom thing, I guess. Nate and Isaac have routines and are able to learn and grow without me "supervising their learning" for today...I feel Ok today, but I am aware that if I push it -- I will start tumbling again. For today, I'll take it easy...call my friends, go see Dr. Cohen this afternoon.
A lot of people ask how I do it...I get it, I asked that about other people when they were sick. I do it, one step at a time, one moment at a time...I do it because it's the road I've been placed on. On good days, I do it with joy. On bad days, I do it while bitching. But what's important is that I do it...I've tried to quit on several occasions and God hasn't accepted my resignation. My family still needs me. And I still have more to learn.
So for now, I'm still on the sandy, beach road -- good, ocean-views and I'm not the driver, but thanks to all who are driving for me right now...
Much Love,
Michele
Saturday, September 25, 2010
DECISIONS, DECISIONS...
Hi Friends,
Thanks for your continued love, support, and prayers. I like that I am allowed to make the decisions regarding my medical treatment -- it's my body, my quality of life, etc. But sometimes I don't like the choices. Today for example -- Saturday is my megadose of methotrexate (where I take 8 chemo pills at once), and usually I'm pretty sick for Saturday and Sunday -- then OK for the rest of the week. Well, today I had two choices. 1. Take the chemo pills on top of already having the flu. Better for the lupus, but could make me VERY pukey and possibly dehydrated and needing IV fluids. or 2. Skip the methotrexate for this week. Better for the flu recovery, but after 8 weeks we finally had the methotrexate to a therapeutic level. So, I'd be taking the chance that lupus crap would be back and it might takes weeks to get back to my current pre-flu health.
I thought for a while, and consulted SuperMan and Dear Doctor, who both said it was up to me to decide whether I could handle the treatment today. And I'm SO invested in this remission that I chose to take the pills. I hope it was the right choice long-term. Because short-term it has been a really sucky day spent mostly on the floor next to my toilet. I remember the first time I was hospitalized in the oncology ward at LosRobles, and all I could hear was the sounds of people wretching and crying. It was so sad. Now I can say I feel their pain. I'm spending so much time on my bathroom floor that I'm seriously considering moving a pillow and blanket in there:-(
Of course, I'd have to bring in the netbook, too. I've been watching NetFlix for most of the day -- so far, The Man Without A Face, Good Will Hunting, and Outsourced. I have to keep my mind off the sick feeling...
SuperMan is home and he cooked dinner, did all the weekly chores with the kids, and just now got groceries. He brought me GatorAde and popsicles for hydration, so I'm working on the hydration:-) I think I can, I think I can....
But for today, lupus sucks, chemo sucks, menopause at 39 (brought on by the chemo) sucks:-) IT ALL BITES...except SuperMan and the kids taking care of me. But Isaac and Cam are still pretty sick themselves...
Gonna call Bill for a popsicle...yum, dinner:-)
Love to all!
Michele
Thanks for your continued love, support, and prayers. I like that I am allowed to make the decisions regarding my medical treatment -- it's my body, my quality of life, etc. But sometimes I don't like the choices. Today for example -- Saturday is my megadose of methotrexate (where I take 8 chemo pills at once), and usually I'm pretty sick for Saturday and Sunday -- then OK for the rest of the week. Well, today I had two choices. 1. Take the chemo pills on top of already having the flu. Better for the lupus, but could make me VERY pukey and possibly dehydrated and needing IV fluids. or 2. Skip the methotrexate for this week. Better for the flu recovery, but after 8 weeks we finally had the methotrexate to a therapeutic level. So, I'd be taking the chance that lupus crap would be back and it might takes weeks to get back to my current pre-flu health.
I thought for a while, and consulted SuperMan and Dear Doctor, who both said it was up to me to decide whether I could handle the treatment today. And I'm SO invested in this remission that I chose to take the pills. I hope it was the right choice long-term. Because short-term it has been a really sucky day spent mostly on the floor next to my toilet. I remember the first time I was hospitalized in the oncology ward at LosRobles, and all I could hear was the sounds of people wretching and crying. It was so sad. Now I can say I feel their pain. I'm spending so much time on my bathroom floor that I'm seriously considering moving a pillow and blanket in there:-(
Of course, I'd have to bring in the netbook, too. I've been watching NetFlix for most of the day -- so far, The Man Without A Face, Good Will Hunting, and Outsourced. I have to keep my mind off the sick feeling...
SuperMan is home and he cooked dinner, did all the weekly chores with the kids, and just now got groceries. He brought me GatorAde and popsicles for hydration, so I'm working on the hydration:-) I think I can, I think I can....
But for today, lupus sucks, chemo sucks, menopause at 39 (brought on by the chemo) sucks:-) IT ALL BITES...except SuperMan and the kids taking care of me. But Isaac and Cam are still pretty sick themselves...
Gonna call Bill for a popsicle...yum, dinner:-)
Love to all!
Michele
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