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.
Thursday, January 3, 2013
Monday, December 31, 2012
Port Installation
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.
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.
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.
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