Writing this post haste for a friend of friend who is wondering about this procedure.
The week before I began chemo treatments, I had a port surgically installed. A port is a device installed inside your body that allows what I've come to think of as main-veining directly into the bloodstream to avoid deterioration, burns and other ugliness that might come with all the puncturing that comes with chemo treatments and the many blood draws. Medication can be administered as well as blood drawn through a port. Mine was installed in the upper portion of my chest below my collar bone.
The surgery that I had to install the port was brief. They wheeled me in on a stretcher after giving me a local numbing injections. I was awake for the entire operation. There was pain, there was blood. There are many detailed descriptions of this on line. I look for a good one and post it.
It was worth it to have this done.
The port I have is called a dignity port because it's supposedly buried deeply enough in the skin that it's not visible. I can always see mine. I notice people glancing at it, trying not to star if I wear clothing that reveals that part of my chest. No one was ever brave enough to ask me about it.
In the aftermath of the port, I am glad that I have it. It saved me being used as a pin cushion. It prevented blowing my veins.
Please be warned that anyone with a port needs to be insistant that it be used or you will find yourself still being punctured in the arm. Just say NO! Insist that they use the port. Only a nurse can access your port. Phlebotomists are not trained to use a port. All nurses are not experienced with accessing a port and sometimes it can be a problem. When I was admitted to WCA (a local hospital) the first nurse to try (sans numbing cream) didn't quite get it or didn't think he had and another nurse was called in. Ports are a new thing for many nurses who are not used to cancer patients.
Even though I had my port accessed, the blood suckers would come in the very early hours of the morning to try and draw my blood while I was sleep during my stay at WCA. I almost let them do it once because I was so sound asleep but I managed to wake up and fend them off. After that I wrote "NO" on my the crease of both my arms with a black sharpie.
When I was going through my treatments at Rosewell, they would often schedule me to go to the Phlebotomists before hand. I had to refuse that appointment and arrive early at the oncologist, because they would forget to schedule me properly as a patient who had a port. There was no way I was going to let them puncture my veins when I had the port. I had the port installed for a reason and they were going to use it.
One note, I'm not sure about this and I can't find the reference but I remember reading that it's better to have the port on the opposite side of the heart, in the right side of the chest rather than the left. I can't remember why. I had mine on the left side, opposite the side of my breast cancer which is what was recommended. I'm not sure why. That, I need to research further. This is something to take note of. I write that for anyone who might be about to go for and has gone for the same and is reading this.
I'm glad I had the port installed. I know it saved me a lot of grief. Ports save veins. The chemicals used in chemo can cause burns and reactions in the arms. Veins get chewed up.
They say you won't even know you have it. This is not true. I am always aware of my port and it lends itself to me being more cautious with that part of my body. I have a fear of being bumped into, hugged too hard or falling. Having an active young child who is very physical is cause for some of this concern. The area where the port is installed is sensitive. It feels tight sometimes and I can feel it.
What I am told is very expensive numbing cream they gave me to put on an hour before hand, I don't know if it made a difference. What made the most difference was the skill of the nurse using the port, some nurse were so good it was nothing and others not so much. There were several times when I was in situations where I didn't know in advance (hospital and emergency visits) that they would access my port so I had no time to put on the cream.
I was told by some of the nurses that people who are thinner tend to be more sensitive with the port. That made be feel good because I'm not that thin but if anyone thinks I am then I am going be happy to hear that.
I have been diagnosed with triple negative breast cancer. This is my journey. This blog is to communicate my situation to those who care to know; to share what is going on with my treatment, inform, educate and have a space to let it out. I also want to post the good stuff that is happening in my little world despite it all so that I can give the Tulip a magical place where we can share our life and history both past and in the making. Some of that will be here or on the the other blog.
Monday, December 31, 2012
Finally! Unmedicated Sleep in Brooklyn & Cookies
Who's baking cookies? That's what I woke up to today at 9:30am. And they were GREEN chocolate chip cookies. What a great way to start the last day of the year. This was all the Tulip's idea who woke up at 4 something AM!!!
Last night, was the first night in ages that I slept with no medication. I've been laying there trying til 1, 2, 3, 4am, eventually caving to pop a pill. Does Melatonin count? It's an over the counter supplement so I'm going to say no. That's all I took last night. This makes me happy.
This is a big hurdle for me considering I've been taking meds for sleep since I started the chemo treatments about four months ago.
I did wake up maybe one or two times with hot flashes. I'm trying a few new things like turning around the glowing clock face beside the bed at night, making it as dark as possible. I want a sleeping mask. Sleep has been an issue for me for years and their is a connection between sleep issues, light at night and cancer.
http://www.breastcancer.org/risk/factors/light_exp
INSOMNIA sucks. HOT FLASHES suck.
I've been trying supplements for the hot flashes too. I'll put up another blog post about those. They are the main reason I can not get more than 4 hours of uninterrupted sleep. The latest supplement I am trying on the unrelenting advise of my sister is Krill Oil. $35 for a bottle of krill oil. Maybe the whales are onto something?
I've eaten my oatmeal, organic steel cut irish oatmeal that takes 30 minutes of cooking time. The hardcore breakfast of a fighter. Now, if I can make it to MOMA on the subway and back, that will be progress.
Did I mention I had a GREEN chocolate chip cookie for breakfast. The fun just keeps coming!!!
Last night, was the first night in ages that I slept with no medication. I've been laying there trying til 1, 2, 3, 4am, eventually caving to pop a pill. Does Melatonin count? It's an over the counter supplement so I'm going to say no. That's all I took last night. This makes me happy.
This is a big hurdle for me considering I've been taking meds for sleep since I started the chemo treatments about four months ago.
I did wake up maybe one or two times with hot flashes. I'm trying a few new things like turning around the glowing clock face beside the bed at night, making it as dark as possible. I want a sleeping mask. Sleep has been an issue for me for years and their is a connection between sleep issues, light at night and cancer.
http://www.breastcancer.org/risk/factors/light_exp
INSOMNIA sucks. HOT FLASHES suck.
I've been trying supplements for the hot flashes too. I'll put up another blog post about those. They are the main reason I can not get more than 4 hours of uninterrupted sleep. The latest supplement I am trying on the unrelenting advise of my sister is Krill Oil. $35 for a bottle of krill oil. Maybe the whales are onto something?
I've eaten my oatmeal, organic steel cut irish oatmeal that takes 30 minutes of cooking time. The hardcore breakfast of a fighter. Now, if I can make it to MOMA on the subway and back, that will be progress.
Did I mention I had a GREEN chocolate chip cookie for breakfast. The fun just keeps coming!!!
Friday, December 21, 2012
Pathology Results
My surgeon called me last night, a day early, to let me know the results of my pathology.
The news was good. The best I could hope for. They found only dead cancer cells in the tissue removed where the tumor used to be and in the nodes. It appears that I have had a complete pathologic response to the chemo and what ever else was happening to my body.
In the early new year, I have an appointment with the medical oncologist and we will decide what my next course of treatment will be. There may be more chemo. There may not be. There will likely be more radiation.
I have some time now to take deep breaths, recover from the surgery, continue to recover from the pneumonia and the side effects of the chemo.
In the early new year, I have an appointment with the medical oncologist and we will decide what my next course of treatment will be. There may be more chemo. There may not be. There will likely be more radiation.
I have some time now to take deep breaths, recover from the surgery, continue to recover from the pneumonia and the side effects of the chemo.
Computer drawing for Mama from Tulip
Kiss the Sky
Sounds wonderful doesn't it? Kissing the sky. The simple sound of the phrase running through my mind and over my tongue relaxes me.
Kissing the sky is a simple exercise that most anyone can do. Even in the midst of struggling through chemo or pneumonia as I did. I picked up this exercise up when I'd lost so much weight I noticed my the skin on my neck needed tightening. Yes, saggy neck skin like a a turkey. The dreaded turkey neck. This exercise with help tone your the muscle of face and neck as well as your skin.
It was with much relief that I found this exercise.
Here we go:
-Stand the you feet apart creating a solid foundation
-Bring you chin toward you chest, inhaling and slowly raise it, tilting your head gently and slowly back so you are looking up at the sky/ceiling
-Exhale as you puck up and give the sky a big fat elongated kiss
-Hold the kiss for a minimum count of 8. Inhaling, bring your head back down. You will feel and see (if you sneak a peak in the mirror) your neck muscles tightening and then relaxing when you stop "the kiss".
-Repeat a 5-10 times, building up as you start slowly so as not to over do it.
For more facial exercises and tips you can go here
http://facialexercisesguide.com.
because that's all your getting from me.
*notice - consult your physician before attempting any exercise program. I'm not a doctor, I'm a chick who wants to feel better and share that with you.
Kissing the sky is a simple exercise that most anyone can do. Even in the midst of struggling through chemo or pneumonia as I did. I picked up this exercise up when I'd lost so much weight I noticed my the skin on my neck needed tightening. Yes, saggy neck skin like a a turkey. The dreaded turkey neck. This exercise with help tone your the muscle of face and neck as well as your skin.
It was with much relief that I found this exercise.
Here we go:
-Stand the you feet apart creating a solid foundation
-Bring you chin toward you chest, inhaling and slowly raise it, tilting your head gently and slowly back so you are looking up at the sky/ceiling
-Exhale as you puck up and give the sky a big fat elongated kiss
-Hold the kiss for a minimum count of 8. Inhaling, bring your head back down. You will feel and see (if you sneak a peak in the mirror) your neck muscles tightening and then relaxing when you stop "the kiss".
-Repeat a 5-10 times, building up as you start slowly so as not to over do it.
For more facial exercises and tips you can go here
http://facialexercisesguide.com.
because that's all your getting from me.
*notice - consult your physician before attempting any exercise program. I'm not a doctor, I'm a chick who wants to feel better and share that with you.
Friday, December 14, 2012
Surgery
Arriving at NY Prespeterian at 8am, I had two procedures to go through before I had my surgery
Dye injection
A blue dye is injected into the upper part of my breast that I am told to massage so that it enters the lymph nodes. This is to see which lymph nodes are fed my a direct link to the breast and those are the ones that are removed during surgery.
Poking breast with a wire
I can't remember the name of this procedure but what is done is rather fascinating. Basically, they inject me with some sort of local anesthesia to numb the area and they commence poking me in the breast with a wire seeking out the marker that was placed in the tumor back in August. They hook the wire around the tiny marker by poking and prodding over and over again, running in and out of the room while they x-ray until it's perfectly hooked. They let me see the x-ray, I wish I had my iphone with me so I could have taken a pic. It was a happy moment when they completed the procedure.
This is done so that the surgeon has a guideline to find the tumor site and remove that tissue. I found this to be very clever and using foresight by many medical professions. I think that Dr that did my original biopsy back in August for placing that there.
The Surgery
I don't remember much about this except coming into the room and getting strapped onto a table like jesus on the cross. Many people where moving about the room, everyone was masked and friendly enough behind those masks. They asked a lot of questions about my breathing because I was still recovering from the pneumonia. I wasn't coughing up anything yellow or dark and my lungs were clear so they went ahead.
I woke up from a dragon demon dream in recovery, moaning from the pain. All the Game of Thrones reading I suspect. I hated to leave that for the reality of a recovery room. It seemed like I'd been out for a while. My throat hurt like a bitch. I was spitting up blood. It was from shoving a tube down my throat (tracheal intubation) while I was anesthetized. Oh yes, every thing hurt. Turn up the meds, pleazzzze.
I was in and out of consciousness. They gave me some Ginger Ale eventually and moved me to the recovery room The surgeon came into to see me along with nurses and I don't remember who all else. Eventually, I was moved into a recovery.
One thing I want to mention is that I happened to have some Slipper Elm Bark on hand. I knew there was a reason I was carrying it around in my bag. It was so helpful and they effect on my ravaged painful throat was almost instant. Sometimes it the small things.
We spent a long time in recovery. It was a tight space with a lot of activity. From where I sat I could see the front desk and there was lots of activity with many many visitors coming in and out. I wanted out of there. I wanted chinese food. They gave me a horrid dry turkey sandwich which I nibbled on. When I dressed and stood to leave, a tidal wave of nausea hit me. I thought I was going to heave. It took all of my mental concentration to not do that. My body couldn't take it when I was still recovering from pneumonia and just post surgery. I begged it not do it. I made about 10 trips or more to the toilet with diarrhea. The nurses were trying to get in touch with the on call hospital doctor to get me a pill to help. It took a long long long time for that doctor to get back and me to get that pill. Thank you nurses for holding out, waiting with me and getting pill.
I was the last one to leave the recovery area waiting for the pill. It helped soooo much. We didn't leave until close to 9-10pm. I wanted chinese food again. I got it. It was the best Chinese food ever.
Review of pre-sugery:
The one thing I found unnerving about this surgery was how they moved me from place to place for all the procedures. I had to wear a hospital gown, pants, robe and these itchy little socks. They had me walking around in public halls, taking elevators and going from place to place without any solid foot wear. This was not reassuring, felt plain sketchy and unsafe. I walked into surgery with those some sock on, IN PUBLIC HALLS. That didn't feel okay to me. I commented while I was escorted around by various medical staff for the pre-surgery treatments and they apologized but this was the way it was. How is that reducing infection? Me, dashing about the halls in the clothing I'll be wearing in surgery? I wish I had been permitted to wear my sneakers or advised to bring some type of footwear or loaned a pair of something like crocks.
Dye injection
A blue dye is injected into the upper part of my breast that I am told to massage so that it enters the lymph nodes. This is to see which lymph nodes are fed my a direct link to the breast and those are the ones that are removed during surgery.
Poking breast with a wire
I can't remember the name of this procedure but what is done is rather fascinating. Basically, they inject me with some sort of local anesthesia to numb the area and they commence poking me in the breast with a wire seeking out the marker that was placed in the tumor back in August. They hook the wire around the tiny marker by poking and prodding over and over again, running in and out of the room while they x-ray until it's perfectly hooked. They let me see the x-ray, I wish I had my iphone with me so I could have taken a pic. It was a happy moment when they completed the procedure.
This is done so that the surgeon has a guideline to find the tumor site and remove that tissue. I found this to be very clever and using foresight by many medical professions. I think that Dr that did my original biopsy back in August for placing that there.
The Surgery
I don't remember much about this except coming into the room and getting strapped onto a table like jesus on the cross. Many people where moving about the room, everyone was masked and friendly enough behind those masks. They asked a lot of questions about my breathing because I was still recovering from the pneumonia. I wasn't coughing up anything yellow or dark and my lungs were clear so they went ahead.
I woke up from a dragon demon dream in recovery, moaning from the pain. All the Game of Thrones reading I suspect. I hated to leave that for the reality of a recovery room. It seemed like I'd been out for a while. My throat hurt like a bitch. I was spitting up blood. It was from shoving a tube down my throat (tracheal intubation) while I was anesthetized. Oh yes, every thing hurt. Turn up the meds, pleazzzze.
I was in and out of consciousness. They gave me some Ginger Ale eventually and moved me to the recovery room The surgeon came into to see me along with nurses and I don't remember who all else. Eventually, I was moved into a recovery.
One thing I want to mention is that I happened to have some Slipper Elm Bark on hand. I knew there was a reason I was carrying it around in my bag. It was so helpful and they effect on my ravaged painful throat was almost instant. Sometimes it the small things.
We spent a long time in recovery. It was a tight space with a lot of activity. From where I sat I could see the front desk and there was lots of activity with many many visitors coming in and out. I wanted out of there. I wanted chinese food. They gave me a horrid dry turkey sandwich which I nibbled on. When I dressed and stood to leave, a tidal wave of nausea hit me. I thought I was going to heave. It took all of my mental concentration to not do that. My body couldn't take it when I was still recovering from pneumonia and just post surgery. I begged it not do it. I made about 10 trips or more to the toilet with diarrhea. The nurses were trying to get in touch with the on call hospital doctor to get me a pill to help. It took a long long long time for that doctor to get back and me to get that pill. Thank you nurses for holding out, waiting with me and getting pill.
I was the last one to leave the recovery area waiting for the pill. It helped soooo much. We didn't leave until close to 9-10pm. I wanted chinese food again. I got it. It was the best Chinese food ever.
Review of pre-sugery:
The one thing I found unnerving about this surgery was how they moved me from place to place for all the procedures. I had to wear a hospital gown, pants, robe and these itchy little socks. They had me walking around in public halls, taking elevators and going from place to place without any solid foot wear. This was not reassuring, felt plain sketchy and unsafe. I walked into surgery with those some sock on, IN PUBLIC HALLS. That didn't feel okay to me. I commented while I was escorted around by various medical staff for the pre-surgery treatments and they apologized but this was the way it was. How is that reducing infection? Me, dashing about the halls in the clothing I'll be wearing in surgery? I wish I had been permitted to wear my sneakers or advised to bring some type of footwear or loaned a pair of something like crocks.
Sunday, December 2, 2012
Back in Brooklyn
We're back in Brooklyn and it's good to be back. I'm so weak and surprised how little I can do without getting out of breath having chest and rib pain.
We managed to go to the coop on Sunday for groceries in the afternoon, even with it being an over crowded Sunday. People whacking and pushing as they do with the 1000 excuse me's, I'm so protective of my body and fearful of getting hurt, sick. It was good to be there, regardless. I love the Park Slope food coop.
We bought a Christmas tree from the Vermont guy up the block on Union which we are slowly decorating.
Walking up and down the stairs to wash laundry is a big accomplishment. I'm trying to sort out pieces of my life. Being away for 4 months, things built up and there is disarray. It was a mess before we left so suddenly because of the sequestering to the back of the house with the mold. I feel over-whelmed, like I am never going to get my life sorted.
At least the Christmas tree is up and we can get started with the holiday spirit. I'm not robbing my kid of the holiday even with all that I am going through.
We managed to go to the coop on Sunday for groceries in the afternoon, even with it being an over crowded Sunday. People whacking and pushing as they do with the 1000 excuse me's, I'm so protective of my body and fearful of getting hurt, sick. It was good to be there, regardless. I love the Park Slope food coop.
We bought a Christmas tree from the Vermont guy up the block on Union which we are slowly decorating.
Walking up and down the stairs to wash laundry is a big accomplishment. I'm trying to sort out pieces of my life. Being away for 4 months, things built up and there is disarray. It was a mess before we left so suddenly because of the sequestering to the back of the house with the mold. I feel over-whelmed, like I am never going to get my life sorted.
At least the Christmas tree is up and we can get started with the holiday spirit. I'm not robbing my kid of the holiday even with all that I am going through.
Wednesday, November 21, 2012
Pneumonia - Hospital Stay #2 - leaving Jamestown, NY
Writing this post discharge, it's 6am and I can't sleep so time to get this down.
Things went from bad to worse and I ended up admitted to the Roswell hospital on Wednesday, November 22nd with pneumonia in both lungs, the day I would have received Chemo #6.
Friday, November 16th - I am given the MRI that I begged for and a lung x-ray because I was was having coughing fits and trouble breathing as in air hunger.
WBC (white blood count) - 72k
Sat & Sun, Nov 17 & 18th - very rough days with the breathing. I couldn't make it to the bathroom with out being exhausted and out of breath. We go to the mall with me in a wheel chair so I can get the Tulip little high heel shoes, her first pair of dangly earrings and a backing for the quilt she is making with her Auntie. The shoes & earrings were likely not the best parenting choices. In my weakness, I wanted to see her happy so I caved on the requests that gone on for weeks.
Monday, Nov 19th - I called because I'd been so ill over the weekend. They asked me to rush in because of what the x-rays showed, citing I may have a pulmonary embolism (blot clots) in my lungs. They couldn't have noted this on Friday when the x-ray was taken along with that 73K + WBC count? WTF. We drive in and I am given a CT scan. Results show no blood clots in my legs or chest but both my lungs have pneumonia. They change my antibiotic and send me home with oxygen. I have to have oxygen 24/7.
Wednesday, Nov 21th - I called because I was not better, not even minutely. I call twice, 3 times because they don't call back. Eventually, they call back and tell me to comein but hurry because they are going to admit me. We are over an hour and a half away. They know this. Why wait so long? We pack for a hospital stay AGAIN and rush in. I should publish a list of what to bring to the hospital.
I'm admitted. There are a lot of doctors coming to see me. I like the infectious disease doctors, They seem to have it together and are concerned. They are switching up my antibiotics with intravenous, stronger antibiotics and I will be given more than one.
Hooked up to a machine, I am intravenously via my port pumped with lots of antibiotics. I was too sick to get the names of all of them but it couldn't have been good. I'll follow up on that, it'll be good info to know. There are breathing/pulmonary specialists who visit me everyday. I start to feel a little better.
It's rough. They switch my room. I was a roommate for a few hours, they move me again. I do yoga breathing exercises, I cough up phlegm. They are unable to diagnose what type of pneumonia I have. They never did test that excellent phlegm ball I coughed up and was saving for them on the counter in the designated container.
The DH stayed in Hope Lodge an excellent group home for people with family staying at Rosewell. It was free for him to stay there. Unlike my oncologist had told me was completely impossible.
Thursday, November 29th - I am discharged. They tell me the lung crackling is gone. I am given an oral prescription for an antibiotic, Cipro and not much else or any advice on recovery.
Friday, Nov 30th. I walk 3 miles, it's tough, I get very cold while walking. I am determined to pack & leave when we get back. I set up an appointment with an oncologist in NYC in the same facility as the surgeon I have an appointment with.
I call the BC center at Roswell for support for ongoing treatment recommendations, I get nothing. I cancel my future appointments with the center & Dr Edge, completely frustrated by what has happened to me.
We call the school in Brooklyn to see if they will still take the Tulip as they said. We get good news, they will. We're leaving.
On Friday, after the Tulip gets out of school, we pack and head out.
Things went from bad to worse and I ended up admitted to the Roswell hospital on Wednesday, November 22nd with pneumonia in both lungs, the day I would have received Chemo #6.
Friday, November 16th - I am given the MRI that I begged for and a lung x-ray because I was was having coughing fits and trouble breathing as in air hunger.
WBC (white blood count) - 72k
Sat & Sun, Nov 17 & 18th - very rough days with the breathing. I couldn't make it to the bathroom with out being exhausted and out of breath. We go to the mall with me in a wheel chair so I can get the Tulip little high heel shoes, her first pair of dangly earrings and a backing for the quilt she is making with her Auntie. The shoes & earrings were likely not the best parenting choices. In my weakness, I wanted to see her happy so I caved on the requests that gone on for weeks.
Monday, Nov 19th - I called because I'd been so ill over the weekend. They asked me to rush in because of what the x-rays showed, citing I may have a pulmonary embolism (blot clots) in my lungs. They couldn't have noted this on Friday when the x-ray was taken along with that 73K + WBC count? WTF. We drive in and I am given a CT scan. Results show no blood clots in my legs or chest but both my lungs have pneumonia. They change my antibiotic and send me home with oxygen. I have to have oxygen 24/7.
Wednesday, Nov 21th - I called because I was not better, not even minutely. I call twice, 3 times because they don't call back. Eventually, they call back and tell me to comein but hurry because they are going to admit me. We are over an hour and a half away. They know this. Why wait so long? We pack for a hospital stay AGAIN and rush in. I should publish a list of what to bring to the hospital.
I'm admitted. There are a lot of doctors coming to see me. I like the infectious disease doctors, They seem to have it together and are concerned. They are switching up my antibiotics with intravenous, stronger antibiotics and I will be given more than one.
Hooked up to a machine, I am intravenously via my port pumped with lots of antibiotics. I was too sick to get the names of all of them but it couldn't have been good. I'll follow up on that, it'll be good info to know. There are breathing/pulmonary specialists who visit me everyday. I start to feel a little better.
It's rough. They switch my room. I was a roommate for a few hours, they move me again. I do yoga breathing exercises, I cough up phlegm. They are unable to diagnose what type of pneumonia I have. They never did test that excellent phlegm ball I coughed up and was saving for them on the counter in the designated container.
The DH stayed in Hope Lodge an excellent group home for people with family staying at Rosewell. It was free for him to stay there. Unlike my oncologist had told me was completely impossible.
Thursday, November 29th - I am discharged. They tell me the lung crackling is gone. I am given an oral prescription for an antibiotic, Cipro and not much else or any advice on recovery.
Friday, Nov 30th. I walk 3 miles, it's tough, I get very cold while walking. I am determined to pack & leave when we get back. I set up an appointment with an oncologist in NYC in the same facility as the surgeon I have an appointment with.
I call the BC center at Roswell for support for ongoing treatment recommendations, I get nothing. I cancel my future appointments with the center & Dr Edge, completely frustrated by what has happened to me.
We call the school in Brooklyn to see if they will still take the Tulip as they said. We get good news, they will. We're leaving.
On Friday, after the Tulip gets out of school, we pack and head out.
Wednesday, November 14, 2012
The walk, the show
I did my walk today, all 3.5 plus miles. It took me twice as long as usual. It was not easy but I think it helped the leg pain. I got so cold. I couldn't move as fast to keep my body temp up. I'm so slow and weak. The pain isn't as bad today.
Last night, I watched The Parents show that friends recommended to me because one of the leads is going through breast cancer. I'm enjoying watching the show and texting with my friend each week through the show although it's been delayed because of the debates and the election.
There were moments on the show that made me physically cringe. When the leading lady heads into a chemo center for treatment, I could feel my whole body recoil, they even had the sound of the drip machine. The spouse of this women goes out drinking with what I think is his brother and makes comments about how women that go through chemo are "ghosts" and how scared he is. That remake was so hard to hear because I don't want to be a ghost and I don't want my anyone fighting the disease to be thought of as a ghost. It's a show I know but still it upset me. The steamy sex parts were much better. The point of me watching is that friends are remarking that the show portrays a more authentic experience of breast cancer. So I watch.
Last night, I watched The Parents show that friends recommended to me because one of the leads is going through breast cancer. I'm enjoying watching the show and texting with my friend each week through the show although it's been delayed because of the debates and the election.
There were moments on the show that made me physically cringe. When the leading lady heads into a chemo center for treatment, I could feel my whole body recoil, they even had the sound of the drip machine. The spouse of this women goes out drinking with what I think is his brother and makes comments about how women that go through chemo are "ghosts" and how scared he is. That remake was so hard to hear because I don't want to be a ghost and I don't want my anyone fighting the disease to be thought of as a ghost. It's a show I know but still it upset me. The steamy sex parts were much better. The point of me watching is that friends are remarking that the show portrays a more authentic experience of breast cancer. So I watch.
Hospital
First, the good news. For the first time since I gave birth to my daughter I am thin enough to wrench my wedding & engagement rings off my finger. This has been a goal of mine for so long. I discovered this when I was being wheeled to get a chest x-ray, just in case.
Bad news is that I had to get sick enough to wind up in the hospital to do it.
Bad news is that I had to get sick enough to wind up in the hospital to do it.
Discharged
I was discharged yesterday. There are so many medications I have to take now. The insurance company refused one I really need. It helped me so much with the reflux that was burning my throat and esophagus. I'm going to rant about insurance companies later. It'll take 10 blog posts to get it out. The won't let me have that but okayed some hard core pain reliever that some idiot women tried to high five me about that was standing behind me in line.
Attempts high five, "What'd you do to score the <name of drug edited>?"she asked me wide eyed and excited.
"I have cancer and I'm in a lot of pain." What else was I going to say? I locked the doors when I got back to the van worried she and her friend were going to rob me. Paranoid much?
It was snowing lightly when I came home. All the freak 60 degrees days in mid November I spent in the hospital. They wouldn't let me out side but I found I could open all the windows about 6 inches which was enough to feel the warm air and let the leaves blow inside from the wind tunnel next to my room. There was a dead bird out there decaying. It was something to look at besides brick walls.
Tulip wrote me a note that she left on the table hoping I was picking her up from school. I did. It was grand. Normality like that makes me so happy these days.
Attempts high five, "What'd you do to score the <name of drug edited>?"she asked me wide eyed and excited.
"I have cancer and I'm in a lot of pain." What else was I going to say? I locked the doors when I got back to the van worried she and her friend were going to rob me. Paranoid much?
It was snowing lightly when I came home. All the freak 60 degrees days in mid November I spent in the hospital. They wouldn't let me out side but I found I could open all the windows about 6 inches which was enough to feel the warm air and let the leaves blow inside from the wind tunnel next to my room. There was a dead bird out there decaying. It was something to look at besides brick walls.
Tulip wrote me a note that she left on the table hoping I was picking her up from school. I did. It was grand. Normality like that makes me so happy these days.
Tuesday, November 13, 2012
WCA Hospital
This didn't turn out the way I hoped. I'd been so sick after the chemo and previously with constant coughing, sinus, reflux. etc. I'd had an ongoing fever. I work up on Saturday and decided it was "strange enough" to still be running a temp that I would go to an urgent care center as Roswell advised. My throat hurt so damn much all I wanted a culture of my throat and make sure I didn't have strep.
So my mom takes me to the downtown Jamestown area called "Brooklyn Square" if you can believe it. I go in and pay my $30 co-pay. They do my vitals and let me promptly know they can not help me and with a fever as I am a chemo patient. They tell me I need to be at the hospital. They make me sign some papers about all the dangers of getting to the hospital if I don't use a ambulance, like traffic. ~sigh~
We go and get a humidifier before we go to the hospital. The plan had been to go to the mall to buy Tulip some shoes and me bra that will fit my changing body but no, I go to the hospital instead dreading the huge co-pay. I did call Rosewell first and the doctor I spoke to there wondered why the nurse had recommended I be sent to a urgent care center when what I needed to go to was the hospital. She told me to go directly to the hospital and how important it was, lectured me a bit which I needed because I was still hearing the "oh it's just the neulasta shot, take tylenol.
They checked me in to ER pretty quickly and took some blood through my port eventually. They had some trouble accessing the port but they did it eventually. I felt proud of them when the did. Ports aren't often seen here but they are a new trend so I guess I was a bit of a guinea pig.
Results of the blood draw came back....OMG 37000+ white blood cell count! The ER doctor has a face is serious and says that is alarmingly high and likely infection. The neulasta shots also make for a high white blood cell count my mother and I tell him but he thinks not that high. I just want my throat checked! Why will no one look at my throat and culture it? (Eventually they do) I give the ER doctor the number for Rosewell, he calls and confers with a doctor there. They agree I need to be admitted.
It the middle of my admission to the hospital, right after Tulip shows up to say good night to me. They announce a code C is coming, 2 minutes away, one minute into my room and whisk my kid out.....bye. Then I get wheeled out in the bed by the cutest nurse ever and up to my room new room.
SO here I am, it's getting late...maybe 9pm? I haven't eaten but yogurt today and I would like something to eat. There were busy, there were codes and I had to answer a lot of questions to many people. Eventually I got a tuna sandwich and went to bed.
So my mom takes me to the downtown Jamestown area called "Brooklyn Square" if you can believe it. I go in and pay my $30 co-pay. They do my vitals and let me promptly know they can not help me and with a fever as I am a chemo patient. They tell me I need to be at the hospital. They make me sign some papers about all the dangers of getting to the hospital if I don't use a ambulance, like traffic. ~sigh~
We go and get a humidifier before we go to the hospital. The plan had been to go to the mall to buy Tulip some shoes and me bra that will fit my changing body but no, I go to the hospital instead dreading the huge co-pay. I did call Rosewell first and the doctor I spoke to there wondered why the nurse had recommended I be sent to a urgent care center when what I needed to go to was the hospital. She told me to go directly to the hospital and how important it was, lectured me a bit which I needed because I was still hearing the "oh it's just the neulasta shot, take tylenol.
They checked me in to ER pretty quickly and took some blood through my port eventually. They had some trouble accessing the port but they did it eventually. I felt proud of them when the did. Ports aren't often seen here but they are a new trend so I guess I was a bit of a guinea pig.
Results of the blood draw came back....OMG 37000+ white blood cell count! The ER doctor has a face is serious and says that is alarmingly high and likely infection. The neulasta shots also make for a high white blood cell count my mother and I tell him but he thinks not that high. I just want my throat checked! Why will no one look at my throat and culture it? (Eventually they do) I give the ER doctor the number for Rosewell, he calls and confers with a doctor there. They agree I need to be admitted.
It the middle of my admission to the hospital, right after Tulip shows up to say good night to me. They announce a code C is coming, 2 minutes away, one minute into my room and whisk my kid out.....bye. Then I get wheeled out in the bed by the cutest nurse ever and up to my room new room.
SO here I am, it's getting late...maybe 9pm? I haven't eaten but yogurt today and I would like something to eat. There were busy, there were codes and I had to answer a lot of questions to many people. Eventually I got a tuna sandwich and went to bed.
Friday, November 9, 2012
My Oncologist Left and I am not getting the support I need
My Oncologist left Rosewell. I'm not happy about it. I was given a choice of a male or female doctor or told I could just stick with the PA's for the duration of my chemo. The female did keep the same days as mine did so I wouldn't need to switch.
I actually heard this rumor that my oncologist was leaving from an elderly lady in the waiting room and when I asked her further she pressed her finger to her lips and said it was likely a secret.
My oncologist sent me a letter but it went to the wrong address, my home address. I've told the folks at Rosewell repeatedly to send my mail to my parent's but it keeps not happening.
Chemo#4 was so hard on me, I've been so sick. I was looking for support & sent the note.
I've been sick with a cold for over four weeks and had severe laryngitis last week. I tried email but apparently now that my oncologist left, no one else finds email an acceptable form of communication so I was basically ignored.
This is what I sent:
I hope you can help me. I can't call, laryngitis. I need emails for further contact care. I was never given emails of new contacts. thank you.
I actually heard this rumor that my oncologist was leaving from an elderly lady in the waiting room and when I asked her further she pressed her finger to her lips and said it was likely a secret.
My oncologist sent me a letter but it went to the wrong address, my home address. I've told the folks at Rosewell repeatedly to send my mail to my parent's but it keeps not happening.
Chemo#4 was so hard on me, I've been so sick. I was looking for support & sent the note.
I've been sick with a cold for over four weeks and had severe laryngitis last week. I tried email but apparently now that my oncologist left, no one else finds email an acceptable form of communication so I was basically ignored.
This is what I sent:
I hope you can help me. I can't call, laryngitis. I need emails for further contact care. I was never given emails of new contacts. thank you.
see note I am trying to send:
I need more support. I am not doing well. The last chemo wrecked me. I didn’t get a card for the PA that met with me and I no longer have an oncologist as she left and I have no new contact info for help.
Respiratory Issues/Laryngitis
I’ve had a cold for over four (4) weeks. I cough all the time. I have severe laryngitis for the second time. My throat feels like there is a rubber ring in the back of it. My throat wasn’t even looked at the last time I was in after I said I’d been sick and had laryngitis. I do not have a fever.
Insurance refusal for mouth sore meds
I have more sores in my mouth. My insurance drug provider wouldn’t cover the prescription for the mouthwash unless they get a note from the doctor stating it’s a medical necessity.
Constipation, hemorrhoids, bleeding
I have very bad constipation and now have anal bleeding. I tried a stool softener, eating apricots & prunes, not working.
Reflux
I am having very bad reflux and don’t know what is causing it. I tried Pepcid, not working. I’ve heard Ranitidine helps with this.
Cold Sores
My lips are swollen and I think I am going to get a cold sore.
Sleeping
I continue to have sleep issues, mostly I believe because of the hot flashes and wonder why I was not prescribed Ambien CR - a time released sleeping pill that aids many that have the hot flashes during chemo like I do that wake them up.
Steroids
The first two nights after chemo, I had maybe one (1) hour sleep from 6am to 7am even with 2 ativan at 10pm and 1 ambien at 5am so I did not take the steroids the last day. I finally slept. I am so glad I don’t have to take those any more on this next four doses of chemo.
Glutamine
The PA I met with whose never I can’t even remember because I am so sick told me that Glutamine has no proven effectiveness for neuropathy, yet I found these studies.
Reduction of Paclitaxel-induced Peripheral Neuropathy with Glutamine
Oral glutamine is effective for preventing oxaliplatin-induced neuropathy in colorectal cancer patients.
Oral glutamine is effective for preventing oxaliplatin-induced neuropathy in colorectal cancer patients.
Again, I could use some help. I am displaced. I have no doctors where I am (Jamestown, NY) to call for an appointment. All my doctors are in NYC. I was counting on my oncologist for help.
Rosewell's website is difficult to navigate. I can't find emails for anyone else I might contact and I can't call. I have laryngitis.
xxxxx Real Name & ID removed
PS I finally found Dr O'connor's info on another website not Roswell's. I hope it works. I'ved added a few more hoping this gets through to someone
Aftermath of Chemo 5
*TMI alert*
I woke up with a fever this morning. I missed taking my kid to school for the first time and I missed my walk. I'm trying to get through this.
I thought the last one was bad but this is worse. I feel like someone kicked me in the vagina. This chemo is supposed to have cause neuropathy and it damn well better not cause neuropathy of my vagina. Am I going to get a friggin period? so much pelvic pain, I've never had this.
I've been running a fever (100-101.9) between doses of off brand tylenol and have sharp pains and aches everywhere, dry mouth, still coughing, dry mouth, sore throat, clogged sinuses and my ear hurts. I thought maybe I had the flu but now after doing more research on the side effects of this new chemo, Abraxane, I am convinced it's from that.
Yes, I called Roswell Cancer Center and was told to take the tylenol unless something "strange" happened. Strange like what? Anything strange and I should go to an urgent care center. They didn't even know that diarrhea was a side effect right after administration of Abraxane. I'm finding out otherwise on the interwebs and yet I am told I shouldn't give too much credence to what I read on the internet. I don't believe I am getting the support and assistance I need from Rosewell since my oncologist left. I'll write about that more else where. So what is strange? All this is strange to me.
I know I am bitching. It could be worse, I could be having this along with all the side effects of the steroids that I would have been given if I had the taxol. That would make me evil and the darkness would surely come back.
Anyway, I feel horrible. My kid laughed at me for still being in my pajama's when she came home from school. Geez, first time that has happened through all this and maybe ever. Mama gets dressed every morning but not this morning. The PJ's are Betsy Johnson! I look cute.They are worth wearing all day.
Good things I did
-neti potted
-plenty of fluids including gatorade mix & ginger with pomegranate juice
-ate grass feed yogurt
-decent lunch
-skipping dinner feel to blech
-I added some l-glutamine to my water
-lots of research on my condition
-worked on my blog
I can't spell for shit, chemo brain is taking hold. I need a spelling test every week like my daughter, all these new cancer related words I can't keep straight.
I woke up with a fever this morning. I missed taking my kid to school for the first time and I missed my walk. I'm trying to get through this.
I thought the last one was bad but this is worse. I feel like someone kicked me in the vagina. This chemo is supposed to have cause neuropathy and it damn well better not cause neuropathy of my vagina. Am I going to get a friggin period? so much pelvic pain, I've never had this.
I've been running a fever (100-101.9) between doses of off brand tylenol and have sharp pains and aches everywhere, dry mouth, still coughing, dry mouth, sore throat, clogged sinuses and my ear hurts. I thought maybe I had the flu but now after doing more research on the side effects of this new chemo, Abraxane, I am convinced it's from that.
Yes, I called Roswell Cancer Center and was told to take the tylenol unless something "strange" happened. Strange like what? Anything strange and I should go to an urgent care center. They didn't even know that diarrhea was a side effect right after administration of Abraxane. I'm finding out otherwise on the interwebs and yet I am told I shouldn't give too much credence to what I read on the internet. I don't believe I am getting the support and assistance I need from Rosewell since my oncologist left. I'll write about that more else where. So what is strange? All this is strange to me.
I know I am bitching. It could be worse, I could be having this along with all the side effects of the steroids that I would have been given if I had the taxol. That would make me evil and the darkness would surely come back.
Anyway, I feel horrible. My kid laughed at me for still being in my pajama's when she came home from school. Geez, first time that has happened through all this and maybe ever. Mama gets dressed every morning but not this morning. The PJ's are Betsy Johnson! I look cute.They are worth wearing all day.
Good things I did
-neti potted
-plenty of fluids including gatorade mix & ginger with pomegranate juice
-ate grass feed yogurt
-decent lunch
-skipping dinner feel to blech
-I added some l-glutamine to my water
-lots of research on my condition
-worked on my blog
I can't spell for shit, chemo brain is taking hold. I need a spelling test every week like my daughter, all these new cancer related words I can't keep straight.
Wednesday, November 7, 2012
Chemo #5
Chemo #5
This was supposed to be easy by all accounts. No more steroids! No more red death! I was getting the good stuff. Just one drip bag, fast and easy. No more meds. It started out good. It was less than an hour before my little buzzer rang to call me for my turn for chemo, a miracle compared to the over 2 almost 3 hour wait I'd had for Chemo #4 and 2 hours for Chemo #3.
Abraxane instead of Taxol this time. Abraxane I am told is a better choice for me then taxol, although they are essentially the same chemo drug but Abraxane uses a different solvent that does not cause the severe allergic reactions or side effects that the taxol does. They'll be a rant about this and insurance companies elsewhere.
The nurse hooked me up to the drip with my port and all is well. Drip, drip, drip. I'm drinking my water as I am supposed to. I've been sick with this nasty cough for a long ass time, 4 weeks so I coughing and hacking over dosing on Ricola cough drops as they're the only thing that helps. I'm reading my novel, eating a few high protein Newman's pretzels and thinking about going to get some food afterwards, in the time in between my appointment with the genetic counselor to go over my BRAC results. Yeah. The drip is done, the nurse comes in and unhooks me and I start coughing, coughing hard and BLLLLEEEEECHHH!!! Vomiting! Luckily, I am isolated (not sure why) and I have my own bathroom or it would have been all over the floor. I puke in the sink. I puke in toilet. I puke again and again and again. God...awful. Nurse comes in and checks on my meds. Yes upstairs when I saw a PA (no more oncologist for me), they gave me a prescription for something for the coughing but I won't be able to fill it til I get home which is hours away. I recover from the coughing and vomiting, drink a small cup of cool water real slow and make my way up to my appointment in genetics skipping lunch. I have no desire to eat after all that heaving. The appointment goes well. They check my cafe au lait spots, measuring and counting as well as checking other possible signs for neurofibromatosis which runs in one branch of my family. They decide that further testing is unnecessary as I don't exhibit enough signs to warrant it.
We make our way downstairs to leave and I have to pick up my appointment sheet for next time and oh no!...upset stomach. I run to the bathroom. Yes, massive diarrhea. I keeping trying to get out but no. Repeat x 6. wtf. How am I going to make it home? I call upstairs to the breast clinic and tell them what is going on. They have be come up and give me two anti-diarrhea pills.
Finally, we make it to the car and I pass out. My mother said I didn't even wake up for the gas or tool stop.
Run over by a truck feeling when we get back to the house. I go to bed at 9pm.
In the morning, I think I may have to miss taking my daughter to school and my walk. I do it anyway. I get home and feel beyond hot flash hot. I take my temp. 101.9. damn it. I call Rosewell. They say they'll call back. I wait. They tell me my white blood count is decent so I need to take tylenol. My mother gives me some knock off. I'm too sick to go to my kid's violin lesson that night. I don't know if the fever is from the chemo or I have a bug. Folks at Rosewell are not helpful. If any thing strange or different happens go to an urgent care center is what I am told. They're not around but for 9-5 basically M-F.
This was supposed to be easy by all accounts. No more steroids! No more red death! I was getting the good stuff. Just one drip bag, fast and easy. No more meds. It started out good. It was less than an hour before my little buzzer rang to call me for my turn for chemo, a miracle compared to the over 2 almost 3 hour wait I'd had for Chemo #4 and 2 hours for Chemo #3.
Abraxane instead of Taxol this time. Abraxane I am told is a better choice for me then taxol, although they are essentially the same chemo drug but Abraxane uses a different solvent that does not cause the severe allergic reactions or side effects that the taxol does. They'll be a rant about this and insurance companies elsewhere.
The nurse hooked me up to the drip with my port and all is well. Drip, drip, drip. I'm drinking my water as I am supposed to. I've been sick with this nasty cough for a long ass time, 4 weeks so I coughing and hacking over dosing on Ricola cough drops as they're the only thing that helps. I'm reading my novel, eating a few high protein Newman's pretzels and thinking about going to get some food afterwards, in the time in between my appointment with the genetic counselor to go over my BRAC results. Yeah. The drip is done, the nurse comes in and unhooks me and I start coughing, coughing hard and BLLLLEEEEECHHH!!! Vomiting! Luckily, I am isolated (not sure why) and I have my own bathroom or it would have been all over the floor. I puke in the sink. I puke in toilet. I puke again and again and again. God...awful. Nurse comes in and checks on my meds. Yes upstairs when I saw a PA (no more oncologist for me), they gave me a prescription for something for the coughing but I won't be able to fill it til I get home which is hours away. I recover from the coughing and vomiting, drink a small cup of cool water real slow and make my way up to my appointment in genetics skipping lunch. I have no desire to eat after all that heaving. The appointment goes well. They check my cafe au lait spots, measuring and counting as well as checking other possible signs for neurofibromatosis which runs in one branch of my family. They decide that further testing is unnecessary as I don't exhibit enough signs to warrant it.
We make our way downstairs to leave and I have to pick up my appointment sheet for next time and oh no!...upset stomach. I run to the bathroom. Yes, massive diarrhea. I keeping trying to get out but no. Repeat x 6. wtf. How am I going to make it home? I call upstairs to the breast clinic and tell them what is going on. They have be come up and give me two anti-diarrhea pills.
Finally, we make it to the car and I pass out. My mother said I didn't even wake up for the gas or tool stop.
Run over by a truck feeling when we get back to the house. I go to bed at 9pm.
In the morning, I think I may have to miss taking my daughter to school and my walk. I do it anyway. I get home and feel beyond hot flash hot. I take my temp. 101.9. damn it. I call Rosewell. They say they'll call back. I wait. They tell me my white blood count is decent so I need to take tylenol. My mother gives me some knock off. I'm too sick to go to my kid's violin lesson that night. I don't know if the fever is from the chemo or I have a bug. Folks at Rosewell are not helpful. If any thing strange or different happens go to an urgent care center is what I am told. They're not around but for 9-5 basically M-F.
Tuesday, November 6, 2012
Staging
Staging
The staging
of the cancer, 2B, is a clinical staging (based on imaging). This is not as
precise as pathological (surgical) staging. Due to the large size of my tumor
(6cm+) it was recommended that I receive neoadjuvant chemotherapy. This means that
chemotherapy is administered before surgery. When surgery is performed before
chemo, they are able to test the tumor and the nodes microscopically to see if
there is involvement and thus stage the cancer more accurately.
From all
the tests I have been given, it appears the cancer has not spread (metastasized).
I have nodes that are reactive, meaning that they are enlarged and responding
to the cancer.
When I went
for that first mammogram and ultrasound, the technician and doctor she called
in made note of the enlarged lymph nodes. When I came back two days later for
the biopsy, one of these nodes (the largest) was biopsied. It tested negative
for cancer.
The two (2)
simply means it has advanced locally.
Wednesday, October 24, 2012
Chemo #4
Chemo #4
Yesterday, I had my 4th AC chemo. It sucked. They were 2+ hours
behind so I was there from 8:30am til 3:30pm. I felt like I was going to heave
or pass out after the chemo was done. I'm not sure what happened. I've never
felt bad before. I was shaking. They gave me an Ativan after then I
passed out in the car on the way home.
My Oncologist is leaving :( so I have a choice of reassignment or
to continue with PA's. Issues discussed before my chemo.
Not Taxol - Abraxane next
I was then told that because I have bad side effects from the steroids, they are not going to give me taxol but instead I will be given a chemo drug that is the same as taxol but it's in a different carrier that doesn't cause this allergic reaction that most people have so I don't have to take the steroids. It's a more expensive drug, Abraxane and I was told that insurance companies don't approve it unless there is a good reason for it. Anyone else have this?
L-glutamine
When I met with the PA I mentioned that I was going to add
the l-glutamine to my list of what I would be taking. She said she was
going to talk to the pharmacist about it. She came back and reported that there
is no evidence that the l-glutamine helps in any way but I could still
take it.
Blue nails.
I also discussed the blue nails and nail pain. I asked about the icing
with the PA and my OC yesterday. They both said that the icing does not work
yet I see others mention their PA or OC telling them to do it. Any proven evidence? I
am so confused.
Saturday, October 13, 2012
Chemo #3
We're a third of the way there and this time there was excellent news. My Medical Oncologist palpated my breast and said she was unable to find a definitive mass to measure and that the tumor was now a "thickening". She confirmed my hopes. I can still fell a thick like mass in there but it's squishier now and difficult to make a judgement because I am obsessively touching my breasts several times a day trying to see if there is a change. I was desperate for my Oncologist's back up and I got it.The happiness I felt as this news washed over me in the way too hot examination room (These rooms are usually freezing) like a hot flash of joy. This news is so good for my prognosis. Response to chemo with triple negative is huge and though I still have a long way to go, this is a huge plus.
After the visit with my ocologist and reassuraces. We hopped down to the chemo center. Where we were told to except an hour to 2 hour wait, minimum. They still haven't managed to organize the waits time for chemo. We were lucky, we waited just over an hour.
I had a room with view
More deadly chemo drugs
We made it back in time to take the Tulip to her ice skating lesson which is a 4 generation event. I need to get some pics of all of there. Much thanks to my Grandmother of discovering this least to skate program as the Jamestown Savings Band Ice Arena. Tulip is loving it.Thursday, October 11, 2012
Family cancer History
There is now a sharable google document with detailed history of cancers for both sides of the family. This document was created as a resource in preparation for genetic consultation I received at Rosewell on 10/11/2012. I spent some time working on it and interviewing many family members but I could use more detailed info. If anyone in the family has need for this information or would like to review it please contact me directly.
I also put quite a bit of time into creating and updating family history on Geni.com as a resource for the family. If you should ever need it, it's there and please add to it.
I also put quite a bit of time into creating and updating family history on Geni.com as a resource for the family. If you should ever need it, it's there and please add to it.
Thursday, October 4, 2012
Shaving my head
Even with the buzz, my hair continued to fall out. I was using a sticky lint brush to take up the hairs that were falling out as was a recommended tip I'd found on one of the sites for people going through chemo. It worked for a while but then it was too much missing hair. The patchy bald spots were not me and I knew the day had come to shave it all off.
I'd read about many methods for shaving it off but when the time came. I did it with a hot wash cloth, regular double edged ladies leg shaver and some more shaving cream I borrowed from my dad. When that ran out, and I couldn't see the back of my head any longer, Al happened to be there for once. He helped finish the back with his shaving cream while I sat on the edge of the bath tub worrying that he was going to cut me, gouge me or make me bleed. Horror stories of people having razor burn, skin rashes, cuts and all sorts of goriness after chemo head shaving had me on edge. Luckily, we made it. We did get some aloe vera gel which seemed to work and I continue to apply that.
cute?
sexy?
I can work this.
Tuesday, October 2, 2012
I saw the wood chuck
It was raining today, pretty hard. I had on my big black muck boots, the sexy ones that give me blisters on my heels if I walk too far or don't wear the right socks. Those big boots allow me to walk over the graves in the cemetery, up through the hills that no one else seems to go. It's more rugged walking but easier on the body, off the beaten trail. That's where I've seen the holes in the ground, the unearthings and excavations of the some creature.
Today, I finally met the woodchuck that lives amongst the tombstones. I was almost on top of him today before we noticed each other and we had the moment of, "What?! Who are you?!?!" His fat little brown wood chuck body, dashed away pretty quickly and he dove into a hole. So much for making a friend in the grave yard. We have time, I'll see him again.
The ravens and the squirrels don't flee from me any more, they know my intentions hold no ill will with them. They used to scream, cackle and scold me, tell all their friends I was coming. It would seem they didn't tell the woodchuck today because I almost stepped on him before he noticed me.
And the cancer? That right breast of mine gets felt up day and night to see if it's growing smaller. I can't be sure. I want to say it is but I don't know. It seems a little softer, a bit smaller. Such a huge lump still there.
Friday, September 28, 2012
Buzzing
I buzzed what was left off today. It's gone, well almost. There's tiny little hairs still left. My sophisticated little hacked off semi-cute haircut that had me imaging myself to be a french fashionista is gone. There was too much hair in the drain, it was falling out on my phone when I would lean forward and every where else. Using a sticky roll lint brush to remove what's left as it falls is next, until I'm bald as a bowling ball.
Don't most people wonder what they look like with no hair? I always have. When I was younger, I used to have fantasies about shaving off my hair and taking off to Africa, traveling and not worrying about things like hair impeding my adventures. When I was pregnant, it was India. I imagined I would flee to India and live with the monks. These two dreams never came to fruition for me and I never found out what I looked like under my hair til now.
It's not so bad. There's a noticeable scar that I'm not sure where it came from and an ugly little sore that they told me was from the steroids. I was bashed in the head so many times as a kid and have so many head scars, somehow the origin of that one was missed.
I'm thinking about my friend Perry, aka Peewee. She rocked the shaved head for years. Where is that woman? I'm going to try to find her on FB or somewhere on the interwebs. I'm not sure if she's the FB type but I need her inspiration. Remembering the first time I saw her in the basement of the World, she was with that Dean guy of Dean & the Weenies. I'm not sure if they were the weenies yet but she came out and smashed plate after plate all over the floor with a saved head wild style and combat boots. I pretty much fell in love with her from that point on.
Back to me now...
At some point in the future my eyebrows, eyelashes and nose hairs will fall out. It'll be very alienesque. Maybe it'll inspire me to get back to my novel writing?
The constant nose drip sucks I hear, no more hair to hold the snot in. Appreciate those nose hairs while you have them. I am.
Sunday, September 23, 2012
The Tumor
It's large. 6cm x 5cm ish. That's huge. It's bigger than a golf ball, may 3 golf balls
6cm = 2.3622 inches
golf ball = the size of 1.68 inches (4.27 cm)
The most interesting representation of the tumor size I found was this ball gag
http://www.dhgate.com/extra-large-full-white-soft-leather-6-cm/p-ff8080813049bfcf01304f97e5dc3310.html
6cm = 2.3622 inches
golf ball = the size of 1.68 inches (4.27 cm)
The most interesting representation of the tumor size I found was this ball gag
http://www.dhgate.com/extra-large-full-white-soft-leather-6-cm/p-ff8080813049bfcf01304f97e5dc3310.html
Friday, September 21, 2012
Chemo Round 2
My chemo today was delayed because of a scheduling error. I was told my oncologist begged for me to receive the treatment in the facility on the seventh floor which is part of the research center where I had my first treatment. Volunteering for these research studies has it's benefits, it cushier up there with private rooms and a window with a view of the beautiful Buffalo skyline.Treatment went ok....they used my port today twice. First for the blood draw and then for chemo and all the lovely drugs that go with it so no blown veins.
The good news in that the tumor hasn't grown and is slightly, very slightly smaller. I thought it might be but I wasn't sure. I find myself obsessively checking my breast to see if it has. I didn't want to have too much false hope and be disappointed.
The other good news is that my Oncologist halved the dose of the steroids. I had a nasty reaction to the first round. My face and chest were beat red and swollen, I wasn't able to sleep, my thoughts were unhealthy and way too much crying. A double dose of the sleeping pill tonight without worrying about not waking up is in order. Not sleeping more that 2 hours for all those days sucked.
And more good news, I lost 4 pounds. I've been exercising most days with a 30 minute to one hour walk in the cemetery, nothing too hardcore. I tried jogging a little but my boobs are too big and they yank on the port, highly unpleasant.
Not sure if this is good news but my white blood cell went up. The oncologist didn't go over those with me in the appointment and I forgot so I asked for a print out during my chemo. I called to ask what the deal was with higher white cell count to see if I should I be concerned. The nurse called back and said it from the steroids. My mother and sister think it's because of the bone marrow shot that I get. Either way, it to be expected and better than the count going down. If it goes down, it's a sign of a weakened immune system and I have to go into protection mode with masks and not out in the general populace,
Right now, I feel weird; numb tingling in the mouth, a burning sensation on my scalp, dry eyeballs, racing heart and I'm shaking. My teeth hurt and the squishy feeling inside my guts is back. I am drinking a lot of water to flush things out. One of the chemo meds I am taking is called "The Red Death" and one of the side effects is red pee, like blood. It's not as dark as I imagined nor as bloody as described. I took a picture, maybe I'll publish it later when I started putting up the pics. Oh and I've got hot flashes. Awesome.
All and all I really don't feel that bad, considering. With the dose of the steroids cut in half there is concern for nausea and vomiting as that is the drugs sole purpose, to prevent me from heaving and feeling so sick I don't eat. I ate normally. I'd rather have nausea instead of no sleep and feeling psychotic.
There was a free movie at the Tulip's new school tonight for kids so we went to that. Whoopie! Let the good times roll, chemo treatment and a free movie in the same day. I could barely hear that movie, there were so many kids in there talking along the sound quality being poor. My Grandmother went with us, and she couldn't hear either but the screen was big. Pretty pictures! It was Lion King II and being Disney, good won over evil and there was a lot of nuzzling in the end. I like nuzzling.
My mother likes to knit for Roswell's blanket project while I get pumped with the chemo. The nurse has to inject it by hand, no drip.
Red Death Pee
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