4 months have passed since I got the most devastating news of my life.
4 months...filled with anxiety, feelings of deep terror, of hopelessness, of despair. Trying to decide how I feel about dying. How I feel about leaving everyone and everything in a way that I have not done before.
4 months...filled with hope, feelings of immeasurable gratitude, of inspiration, of determination. Trying to decide how I feel about living. How I feel about being here, now, and for many years to come, yet changed forever.
The back and forth has been like breathing.
Or both sides of one coin, spinning high through the air.
Right now, the chances of the coin landing LIFE SIDE UP are better and better every day.
I look at myself in the mirror.
I am as hairless and flat chested as a pre-pubescent girl.
There are gashes across my chest, and dark bruises where my lovely breasts used to be. It hurts to move my body. But I am a dancer, so I move.
Sometimes, it hurts just to breathe. But I breathe all the deeper for it.
I do my exercises, and I do my stretches, and I keep working toward being able to open my arms wide.
Wide enough to welcome all that is to come. No matter what it is.
I am waiting for the grief over the loss of my breasts, but right now, the most important thing is healing from the physical shock of having surgery, so the grief will come in its own time.
I don't need to force it, or to rush it.
And today, it's my birthday.
Time to celebrate, to be here now, and be happy....and to begin again.
There is a light, As from many candles..... that is coming from all over the world as people pray for me, hope for me, dance for me, burn candles for me, sing chants for me....and love me.
That light is strong, and it keeps me focused on the path ahead. That light celebrates me, and celebrates my life. I visualize myself taking it all in, and growing ever stronger by it's power.
To everyone out there, I say thank you. Little words that are inadequate to the task...but they're all I have.
Here's to the coin landing LIFE SIDE UP....
Tuesday, April 28, 2015
Sunday, April 26, 2015
Quiet house
After having someone here in the house to help me out for the first 10 days after surgery, it seems oddly quiet this afternoon.
Cathy continued to provide me with infinite comfort and help through her stay. Dave took her to the airport on Tuesday afternoon, and she had a lay over in Salt Lake for 2 hours...she did not get to her home until almost 2 am her time, I think.
I can never thank her enough for all that she did for me, and for Dave, during this ordeal.
My sister arrived Wednesday afternoon. She missed out on the really rough first few days of my recovery, but was here to get me through the second phase.
It was wonderful to have her help in the kitchen and around the house while I tested my ability to raise and use my arms a little more each day. She encouraged me to go out and take a walk with her one day, and her being here got me up and out of the house!!
Also? She's my sister, and I have missed her horribly. It was a joy to know we were under the same roof for a few days. Her presence brought me a great deal of peace, and a feeling of being myself again.
Anyway.... the post op visit to the surgeon was Thursday afternoon. The surgeon took out the drains (that was a somewhat uncomfortable experience, but I was SO GLAD to get it done!!) and had the pathology report for us, and the news was good.
The original cancer (invasive ductal carcinoma) that was found in the right breast was almost completely gone because of the chemo, but what remained was the second type (tubular lobular in-situ) that they found initially only in the left breast.
Now we know why that type was present on the left....it traveled there from the right!
Still NO idea how this was all hidden in my tissue for possibly years without being discovered by annual mammograms and follow up ultra sounds.
Anyway, there were two lymph nodes removed on the right that were intramammary (not up in the axilla), but no other lymph nodes were found, not even the one that biopsied positive originally.
There was one lymph node that responded to the sentinel node procedure on the left side, and was thus removed.
That one was tested for pathology, and was found to be benign.
So, all in all, I had FAR fewer lymph nodes removed than was speculated (sorry if this is a repeat of information), and this means that I will probably NOT have to have radiation therapy after the next 8 rounds of chemotherapy.
All samples (read: tissue taken out of my breasts) were tested for "clean" margins. All margins were NEGATIVE, which means they got all of the cancer in my breasts.
The chemotherapy port site is still pretty sore and itchy, because the incision still has tape over it that needs to stay in place until the skin completely knits.
The drain sites are still sore, and the left one still oozes a tiny bit. The doc said I could get into a nice hot bath by today, but I don't think so. I'd rather give the holes longer to close up.
All in all, I have been doing pretty well with my pain. Have not needed many of the pain pills. It still hurts when I do my stretches and exercises, but I keep at it. The incisions mostly hurt at the ends, and once in a while, there is a twinge or stab of pain in the middle somewhere.
The day after the drains came out, I was sore pretty much all day, but that could have been because we were out and about, and because my body was adapting to dealing with the drainage organically, instead of the drains removing the fluid mechanically.
I took some pain pills that night and felt better the next day.
Had my oncology follow up on Friday. He also gave us the pathology results, and we discussed the next steps.
I have to get an echocardiogram before starting the next 4 rounds of chemo, because the medication being used in the next stage can harm the heart.
We need a base line so that we can monitor my heart and make sure no harm is done.
I have the echo on 5/4, surgical follow up/release to go back to work 5/5, and return to work on 5/7.
I will use the coming days to rest and heal and recover my strength and stamina. I am drinking herbal anti-cancer tea every day while I am off of chemo, with the go ahead from my doctor.
Chemo starts again the week after I go back to work.
Yesterday, we went to the OKC Festival of the Arts. Saw my dance studio's performance and walked around looking at the art. It was 85, sunny, and crowded, but I did great!! I didn't tire out until we'd been there over 2 hours.
Having some pain today, and am tired.
Took Elsa to the airport at noon today. I tried driving. Did fine, but the seat belt hits me right where the port is. Ow.
Home now, doing laundry and taking it easy in the quiet house.
Hopefully, I have enough reading, coloring, and meditating/spiritual work to do this coming week while I am alone all day.
My 53rd birthday is Tuesday, and I keep forgetting about it. Next year will be better, with a huge reason to celebrate, I am certain.
Happy Sunday, gentle reader.
Cathy continued to provide me with infinite comfort and help through her stay. Dave took her to the airport on Tuesday afternoon, and she had a lay over in Salt Lake for 2 hours...she did not get to her home until almost 2 am her time, I think.
I can never thank her enough for all that she did for me, and for Dave, during this ordeal.
My sister arrived Wednesday afternoon. She missed out on the really rough first few days of my recovery, but was here to get me through the second phase.
It was wonderful to have her help in the kitchen and around the house while I tested my ability to raise and use my arms a little more each day. She encouraged me to go out and take a walk with her one day, and her being here got me up and out of the house!!
Also? She's my sister, and I have missed her horribly. It was a joy to know we were under the same roof for a few days. Her presence brought me a great deal of peace, and a feeling of being myself again.
Anyway.... the post op visit to the surgeon was Thursday afternoon. The surgeon took out the drains (that was a somewhat uncomfortable experience, but I was SO GLAD to get it done!!) and had the pathology report for us, and the news was good.
The original cancer (invasive ductal carcinoma) that was found in the right breast was almost completely gone because of the chemo, but what remained was the second type (tubular lobular in-situ) that they found initially only in the left breast.
Now we know why that type was present on the left....it traveled there from the right!
Still NO idea how this was all hidden in my tissue for possibly years without being discovered by annual mammograms and follow up ultra sounds.
Anyway, there were two lymph nodes removed on the right that were intramammary (not up in the axilla), but no other lymph nodes were found, not even the one that biopsied positive originally.
There was one lymph node that responded to the sentinel node procedure on the left side, and was thus removed.
That one was tested for pathology, and was found to be benign.
So, all in all, I had FAR fewer lymph nodes removed than was speculated (sorry if this is a repeat of information), and this means that I will probably NOT have to have radiation therapy after the next 8 rounds of chemotherapy.
All samples (read: tissue taken out of my breasts) were tested for "clean" margins. All margins were NEGATIVE, which means they got all of the cancer in my breasts.
The chemotherapy port site is still pretty sore and itchy, because the incision still has tape over it that needs to stay in place until the skin completely knits.
The drain sites are still sore, and the left one still oozes a tiny bit. The doc said I could get into a nice hot bath by today, but I don't think so. I'd rather give the holes longer to close up.
All in all, I have been doing pretty well with my pain. Have not needed many of the pain pills. It still hurts when I do my stretches and exercises, but I keep at it. The incisions mostly hurt at the ends, and once in a while, there is a twinge or stab of pain in the middle somewhere.
The day after the drains came out, I was sore pretty much all day, but that could have been because we were out and about, and because my body was adapting to dealing with the drainage organically, instead of the drains removing the fluid mechanically.
I took some pain pills that night and felt better the next day.
Had my oncology follow up on Friday. He also gave us the pathology results, and we discussed the next steps.
I have to get an echocardiogram before starting the next 4 rounds of chemo, because the medication being used in the next stage can harm the heart.
We need a base line so that we can monitor my heart and make sure no harm is done.
I have the echo on 5/4, surgical follow up/release to go back to work 5/5, and return to work on 5/7.
I will use the coming days to rest and heal and recover my strength and stamina. I am drinking herbal anti-cancer tea every day while I am off of chemo, with the go ahead from my doctor.
Chemo starts again the week after I go back to work.
Yesterday, we went to the OKC Festival of the Arts. Saw my dance studio's performance and walked around looking at the art. It was 85, sunny, and crowded, but I did great!! I didn't tire out until we'd been there over 2 hours.
Having some pain today, and am tired.
Took Elsa to the airport at noon today. I tried driving. Did fine, but the seat belt hits me right where the port is. Ow.
Home now, doing laundry and taking it easy in the quiet house.
Hopefully, I have enough reading, coloring, and meditating/spiritual work to do this coming week while I am alone all day.
My 53rd birthday is Tuesday, and I keep forgetting about it. Next year will be better, with a huge reason to celebrate, I am certain.
Happy Sunday, gentle reader.
Sunday, April 19, 2015
Post surgical post
Tuesday night, we played a game that Cathy brought, and ate a late dinner provided by my friend from dance, Rebecca. She's like the daughter I never had, I love her.
I think I actually slept for a couple of hours.
Wednesday morning, got up bright and early, showered, and was at the hospital and checked in by 7:30.
Then we sat there and waited for almost 3 hours. My surgery was scheduled for 9:30, and I don't think they wheeled me to the O/R suite until 10 or 10:15..
They gave me a xanax for the anxiety. Cathy also rubbed my feet and provided comic relief, threatening to go outside of the curtain and cause a scene.
The surgeon came and we went over everything one last time, and told me the team was running a bit late.
The anesthesiologist came and went over what he was going to do.
A nurse came in and got my full size IV in. Yikes. That hurt, but I don't have a bruise!
Then, we waited some more. Dave would occasionally show me a post of good wishes someone put up on Facebook.
I remember saying "see you later" to Cathy and Dave, and finally being wheeled into the O/R about a half hour or 45 minutes after my scheduled time.
I remember the light fixtures in the O/R, and the anesthesiologist smiling at me and saying hello.
Then I was waking up, answering a nurses questions with no voice, and asking why my tongue was numb.
Next, I remember being wheeled into an elevator, then into my room, transferred by draw sheet from the gurney into my bed, and looking up on the wall where the clock said it was just after 2 pm.
Cathy and Dave were in the room already. I vaguely remember weeping.
I lay there in the bed for a while, and became aware that I had to pee.
Dave pressed the call button, and the nurse helped me sit up. I sat there on the bed for 40 minutes fighting waves of extreme nausea and dizziness. They gave me a compazine, and after it took effect, I was finally able to get up and waddle into the bathroom.
My pee was blue. No. Really. It was blue. The first several times that I went to the bathroom, my pee was gradually less and less blue.
Anyone ever heard of that one before?!
I had one more wave of nausea after that, but then I was fine. They told me to always press the call button if I had to use the bathroom again, to not try to do it myself, so I complied with that.
I was very shaky and weak.
They brought me a tray of liquid foods to get something into my belly. Jello and extremely salty broth, and juice. I wanted the red jello, but they brought me orange instead...OSU fans?? I thought it was funny (the big college football rivalry here is between OSU and OU, and their colors are orange and red, respectively).
I consumed almost all of it. The nursing shift changed, we met my night crew. Dave and Cathy went down to the cafeteria and I went to sleep.
After dinner, they sat in my room with me, We turned on the tv to try to find something interesting. The picture sucked. I had to get up to pee another time or two.
Dave took Cathy home around 8 and he returned around 10 to sleep on the recliner next to my bed. While they were gone, I tried to read, but could not get my eyes to focus, so I napped.
They had me hooked up with these things on my lower legs that had air chambers in them that would inflate and deflate to provide a constant massage in order to prevent blood clots. This was another reason I could not get out of bed by myself.
The nurses came in at intervals to take vitals and give meds, and change drip bags. I was given antibiotics this way, but was not given any to take orally at home.
Once the anesthesia wore all the way off, I was starving. Between the hunger, the nurses, the massaging things on my legs, the noises, and the fluids making me have to pee, I did not get much sleep, but I was so out of it from the pain meds that just resting was enough.
Next morning, the nurse shift changed, and I was given what equates to a room service menu. Dave called and ordered an omelet and yogurt for my breakfast.
I ate almost all of the solid food, and felt SO much better for it. Dave went down for breakfast himself then.
The surgeon came at 8:30 to check on my wounds, and said I was good to go home. Dave went home and showered, and picked Cathy up.
They finally unplugged those massage devices from my legs and allowed me to "move freely about the cabin" as long as I wheeled my IV tower with me. I could finally use the toilet on my own, and get UP to brush my teeth! (Dave had helped me brush my teeth the night before and after breakfast by bringing me a cup of water to use to swish and spit).
The anesthesiologist's nurse came to check on me while Dave was at home, and I asked her about my numb tongue. She said it WOULD go away, but that it could take several days. Ugh. At least it's only a spot on the left side.
The case worker came and explained to me that I had been under observation, not an admit, and that my insurance might balk at that. I signed the paper she gave me to acknowledge that, and explained to her that I know all about that, thanks to 13 years in medical billing.
I gave the paper to Dave, and hope that we don't have issues with observation not being a paid service.
We waited around until after lunch (I had a chef salad and yogurt!), and that was when I remembered that I was the one who was supposed to alert the nurses when my ride had arrived so we could start the discharge process.
They should know better than to trust a post surgical patient hopped up on pain meds to remember anything!
We probably could have gotten out of there a couple of hours earlier, but it was okay. I got another meal out of it, and was more ready to go than I might have been earlier.
We stopped at the Womens' Health Boutique on the way home to get my special bra for mastectomy patients that has pouches for the drains that are coming out of my chest.
It took a while for the insurance process to go through (they will pay for one bra), so Dave went and filled my pain meds scrip while Cathy and I chatted with the boutique lady.
Got home Thursday afternoon around 3:30.
By then my mouth wounds were really bugging me, so I rinsed with salt water to get a head start on healing them. There was a cut on the bottom of my tongue from one of my teeth, I guess, and one near the back of my mouth.
Cathy washed out the bra thingie, and got my drains pinned to my shirt. The boutique also gave me a lanyard with a clip for use in the shower.
Because the dangling drains were bothering me, we tried the lanyard, but the weight of it and the bouncing when I walked was irritating, so we went back to having the drains pinned in my shirt.
Dave and Cathy both agreed that I should take my pain meds every 4 hours the first 24 hours, so I did that. I think that helped me sleep that first night. They knock me out, but I would wake up right on time to take the next one!
The doc had said we could remove the big bandages on Thursday afternoon, and that I could shower right away, but I was afraid, so I just used some wipes, and we left the bandages alone, and I slept in my clothes.
Friday, Dave had to go in to work for a little while, and to run an errand or two, including going back to the boutique for me to obtain a second bra, but I had apparently purchased the last one in my size.
My mouth started to feel better, but I did the salt water rinse a few more times that day.
Cathy got the bandages off for me, and hooked the drains into the lanyard, and I took a very hesitant shower. It felt SO GOOD to get those big pieces of tape off of my skin!
The shower felt great, and I got some of that yellow betadine stuff off of my skin that was making me itch all over, but I was afraid to stay in too long and really do a good job on my upper body to get that stuff off.
The bra was finally dry, so she got me into it, and its SO much better than having the drains pinned to my shirt.
I found on Friday that I still love coloring books and crayons! Something to do to pass the time...and it was fun!
Cathy has been feeding me well, and is great at clearing the drains and measuring the output.
We were instructed to do that at 8 am, 2 pm, and 8 pm daily. The output needs to be monitored, so they gave us a chart to fill in every time. The flow is supposed to decrease, and as of today, it is.
Yesterday's am reading was pretty high on the right side, which has a bigger incision, and where more tissue was removed.
The whole process with the drains makes me sick to my stomach, so I turn my head and let myself be cared for. If Cathy isn't available (she sleeps later than we do), Dave is also very good at this process.
I am SO grateful that I don't have to go through this by myself and do THAT myself. Because it's gross.
Cathy's presence in the house, her cooking, her gentle ministrations, have all been SUCH a huge gift to both me and Dave. She even rubbed lotion on my head for me because it was itchy, and I was having trouble getting my hands up that high.
Friday night, Cathy was feeling a bit punky, so she went to bed early, and Dave and I watched our netflix movie.
I slept in my clothes again that night because I had no pajamas that button up the front.
I did not sleep well, though, because sleeping on my back is bothering my lower back a lot. The pain meds don't seem to help that, and they had started making me nauseous, too, so I have pretty much stopped taking them.
Fortunately, I am having very little pain, just as the doc had said...because the nerves were cut, so there's no feeling across my chest and into my arm pits.
I have been doing a little stretching, and can now reach up to put my hands on my head, and to hang up towels, etc
Saturday, Dave did a couple of errands in the morning, including going to Target and getting me some pajamas.
Cathy slept for close to 13 hours, and felt better when she got up. She helped me get showered again, and this time, I did a much better job on the betadine, and with not being afraid to take a shower.
I've also managed to look down at myself a few times. Progress.
Thanks to the shower, now the only places with the maddening itch are under the remaining tape that keeps the drain and chemo port incisions sterile and dry.
After my shower, I also used a swipe of deodorant, put on some nail polish, and a little bit of make up, just to make myself feel a bit less ugly. I noticed at the make up mirror, however, that there are deep dark hollows under my eyes that I have never seen before, and I have also noticed, when it is quiet, a constant pounding in my head.
I guess I went through something traumatic to my body...what do you think? *wink*
My mouth sores are gone. The numb spot is getting smaller.
Cathy and Dave went grocery shopping yesterday, and I sat out in the back yard and read in the fresh air. It was lovely. I also walked three laps around the back yard, and did some lifting of soup cans to assist in my stretching to get my arms to work again.
I've only had some twinges of pain in the ends of my incisions, and most intensely in the middle of the right one when I move a certain way. That could be being caused by the steri strips that are holding the incision tightly closed, but since I am mostly numb, I am not sure about any of it.
This morning, Dave did my drains, and they were down to almost nothing.
Unfortunately, since I don't have a second bra, and I have been wearing this one constantly since Friday, and it's blood stained, I will have to go back to pinning the drains to my shirt today so that the bra can be washed.
Cathy has promised home made Indian food and mango lassi today, but other than that, we have no plans. We have the game she brought, I have more coloring books to look at, we have several games and decks of cards....I'm sure we will pass the day pleasantly.
We were hoping and hoping for a good thunder storm (Cathy misses them, as they don't get them up in the PNW), but it never really materialized, and we hardly even got any rain.
I hope to figure out how to get a full night of sleep without back pain. Looking forward to today's shower, and to more reading and stretching and lifting stuff. May make some of my herbal tea that we think was keeping my blood count up during chemo to see if that helps with the dark eyes and pounding head.
Everyone have a good Sunday!
I think I actually slept for a couple of hours.
Wednesday morning, got up bright and early, showered, and was at the hospital and checked in by 7:30.
Then we sat there and waited for almost 3 hours. My surgery was scheduled for 9:30, and I don't think they wheeled me to the O/R suite until 10 or 10:15..
They gave me a xanax for the anxiety. Cathy also rubbed my feet and provided comic relief, threatening to go outside of the curtain and cause a scene.
The surgeon came and we went over everything one last time, and told me the team was running a bit late.
The anesthesiologist came and went over what he was going to do.
A nurse came in and got my full size IV in. Yikes. That hurt, but I don't have a bruise!
Then, we waited some more. Dave would occasionally show me a post of good wishes someone put up on Facebook.
I remember saying "see you later" to Cathy and Dave, and finally being wheeled into the O/R about a half hour or 45 minutes after my scheduled time.
I remember the light fixtures in the O/R, and the anesthesiologist smiling at me and saying hello.
Then I was waking up, answering a nurses questions with no voice, and asking why my tongue was numb.
Next, I remember being wheeled into an elevator, then into my room, transferred by draw sheet from the gurney into my bed, and looking up on the wall where the clock said it was just after 2 pm.
Cathy and Dave were in the room already. I vaguely remember weeping.
I lay there in the bed for a while, and became aware that I had to pee.
Dave pressed the call button, and the nurse helped me sit up. I sat there on the bed for 40 minutes fighting waves of extreme nausea and dizziness. They gave me a compazine, and after it took effect, I was finally able to get up and waddle into the bathroom.
My pee was blue. No. Really. It was blue. The first several times that I went to the bathroom, my pee was gradually less and less blue.
Anyone ever heard of that one before?!
I had one more wave of nausea after that, but then I was fine. They told me to always press the call button if I had to use the bathroom again, to not try to do it myself, so I complied with that.
I was very shaky and weak.
They brought me a tray of liquid foods to get something into my belly. Jello and extremely salty broth, and juice. I wanted the red jello, but they brought me orange instead...OSU fans?? I thought it was funny (the big college football rivalry here is between OSU and OU, and their colors are orange and red, respectively).
I consumed almost all of it. The nursing shift changed, we met my night crew. Dave and Cathy went down to the cafeteria and I went to sleep.
After dinner, they sat in my room with me, We turned on the tv to try to find something interesting. The picture sucked. I had to get up to pee another time or two.
Dave took Cathy home around 8 and he returned around 10 to sleep on the recliner next to my bed. While they were gone, I tried to read, but could not get my eyes to focus, so I napped.
They had me hooked up with these things on my lower legs that had air chambers in them that would inflate and deflate to provide a constant massage in order to prevent blood clots. This was another reason I could not get out of bed by myself.
The nurses came in at intervals to take vitals and give meds, and change drip bags. I was given antibiotics this way, but was not given any to take orally at home.
Once the anesthesia wore all the way off, I was starving. Between the hunger, the nurses, the massaging things on my legs, the noises, and the fluids making me have to pee, I did not get much sleep, but I was so out of it from the pain meds that just resting was enough.
Next morning, the nurse shift changed, and I was given what equates to a room service menu. Dave called and ordered an omelet and yogurt for my breakfast.
I ate almost all of the solid food, and felt SO much better for it. Dave went down for breakfast himself then.
The surgeon came at 8:30 to check on my wounds, and said I was good to go home. Dave went home and showered, and picked Cathy up.
They finally unplugged those massage devices from my legs and allowed me to "move freely about the cabin" as long as I wheeled my IV tower with me. I could finally use the toilet on my own, and get UP to brush my teeth! (Dave had helped me brush my teeth the night before and after breakfast by bringing me a cup of water to use to swish and spit).
The anesthesiologist's nurse came to check on me while Dave was at home, and I asked her about my numb tongue. She said it WOULD go away, but that it could take several days. Ugh. At least it's only a spot on the left side.
The case worker came and explained to me that I had been under observation, not an admit, and that my insurance might balk at that. I signed the paper she gave me to acknowledge that, and explained to her that I know all about that, thanks to 13 years in medical billing.
I gave the paper to Dave, and hope that we don't have issues with observation not being a paid service.
We waited around until after lunch (I had a chef salad and yogurt!), and that was when I remembered that I was the one who was supposed to alert the nurses when my ride had arrived so we could start the discharge process.
They should know better than to trust a post surgical patient hopped up on pain meds to remember anything!
We probably could have gotten out of there a couple of hours earlier, but it was okay. I got another meal out of it, and was more ready to go than I might have been earlier.
We stopped at the Womens' Health Boutique on the way home to get my special bra for mastectomy patients that has pouches for the drains that are coming out of my chest.
It took a while for the insurance process to go through (they will pay for one bra), so Dave went and filled my pain meds scrip while Cathy and I chatted with the boutique lady.
Got home Thursday afternoon around 3:30.
By then my mouth wounds were really bugging me, so I rinsed with salt water to get a head start on healing them. There was a cut on the bottom of my tongue from one of my teeth, I guess, and one near the back of my mouth.
Cathy washed out the bra thingie, and got my drains pinned to my shirt. The boutique also gave me a lanyard with a clip for use in the shower.
Because the dangling drains were bothering me, we tried the lanyard, but the weight of it and the bouncing when I walked was irritating, so we went back to having the drains pinned in my shirt.
Dave and Cathy both agreed that I should take my pain meds every 4 hours the first 24 hours, so I did that. I think that helped me sleep that first night. They knock me out, but I would wake up right on time to take the next one!
The doc had said we could remove the big bandages on Thursday afternoon, and that I could shower right away, but I was afraid, so I just used some wipes, and we left the bandages alone, and I slept in my clothes.
Friday, Dave had to go in to work for a little while, and to run an errand or two, including going back to the boutique for me to obtain a second bra, but I had apparently purchased the last one in my size.
My mouth started to feel better, but I did the salt water rinse a few more times that day.
Cathy got the bandages off for me, and hooked the drains into the lanyard, and I took a very hesitant shower. It felt SO GOOD to get those big pieces of tape off of my skin!
The shower felt great, and I got some of that yellow betadine stuff off of my skin that was making me itch all over, but I was afraid to stay in too long and really do a good job on my upper body to get that stuff off.
The bra was finally dry, so she got me into it, and its SO much better than having the drains pinned to my shirt.
I found on Friday that I still love coloring books and crayons! Something to do to pass the time...and it was fun!
Cathy has been feeding me well, and is great at clearing the drains and measuring the output.
We were instructed to do that at 8 am, 2 pm, and 8 pm daily. The output needs to be monitored, so they gave us a chart to fill in every time. The flow is supposed to decrease, and as of today, it is.
Yesterday's am reading was pretty high on the right side, which has a bigger incision, and where more tissue was removed.
The whole process with the drains makes me sick to my stomach, so I turn my head and let myself be cared for. If Cathy isn't available (she sleeps later than we do), Dave is also very good at this process.
I am SO grateful that I don't have to go through this by myself and do THAT myself. Because it's gross.
Cathy's presence in the house, her cooking, her gentle ministrations, have all been SUCH a huge gift to both me and Dave. She even rubbed lotion on my head for me because it was itchy, and I was having trouble getting my hands up that high.
Friday night, Cathy was feeling a bit punky, so she went to bed early, and Dave and I watched our netflix movie.
I slept in my clothes again that night because I had no pajamas that button up the front.
I did not sleep well, though, because sleeping on my back is bothering my lower back a lot. The pain meds don't seem to help that, and they had started making me nauseous, too, so I have pretty much stopped taking them.
Fortunately, I am having very little pain, just as the doc had said...because the nerves were cut, so there's no feeling across my chest and into my arm pits.
I have been doing a little stretching, and can now reach up to put my hands on my head, and to hang up towels, etc
Saturday, Dave did a couple of errands in the morning, including going to Target and getting me some pajamas.
Cathy slept for close to 13 hours, and felt better when she got up. She helped me get showered again, and this time, I did a much better job on the betadine, and with not being afraid to take a shower.
I've also managed to look down at myself a few times. Progress.
Thanks to the shower, now the only places with the maddening itch are under the remaining tape that keeps the drain and chemo port incisions sterile and dry.
After my shower, I also used a swipe of deodorant, put on some nail polish, and a little bit of make up, just to make myself feel a bit less ugly. I noticed at the make up mirror, however, that there are deep dark hollows under my eyes that I have never seen before, and I have also noticed, when it is quiet, a constant pounding in my head.
I guess I went through something traumatic to my body...what do you think? *wink*
My mouth sores are gone. The numb spot is getting smaller.
Cathy and Dave went grocery shopping yesterday, and I sat out in the back yard and read in the fresh air. It was lovely. I also walked three laps around the back yard, and did some lifting of soup cans to assist in my stretching to get my arms to work again.
I've only had some twinges of pain in the ends of my incisions, and most intensely in the middle of the right one when I move a certain way. That could be being caused by the steri strips that are holding the incision tightly closed, but since I am mostly numb, I am not sure about any of it.
This morning, Dave did my drains, and they were down to almost nothing.
Unfortunately, since I don't have a second bra, and I have been wearing this one constantly since Friday, and it's blood stained, I will have to go back to pinning the drains to my shirt today so that the bra can be washed.
Cathy has promised home made Indian food and mango lassi today, but other than that, we have no plans. We have the game she brought, I have more coloring books to look at, we have several games and decks of cards....I'm sure we will pass the day pleasantly.
We were hoping and hoping for a good thunder storm (Cathy misses them, as they don't get them up in the PNW), but it never really materialized, and we hardly even got any rain.
I hope to figure out how to get a full night of sleep without back pain. Looking forward to today's shower, and to more reading and stretching and lifting stuff. May make some of my herbal tea that we think was keeping my blood count up during chemo to see if that helps with the dark eyes and pounding head.
Everyone have a good Sunday!
Tuesday, April 14, 2015
All is in place
My awesome co workers threw a luncheon party in honor of me yesterday, which was very touching.
Then, last night, a friend from the dance studio brought us a feast of roast chicken, home made mac and cheese, and salad. Perfect, because I have not made a menu or plan for this week....I am not focusing on anything like that right now. Only on the tasks at hand.
I was able to schedule all of today off from work, and that has been a HUGE blessing. We were up very late last night, and I had to go have preliminary tests today, so it's all worked out perfectly.
Cathy Carroll arrived from Washington state at midnight last night, and is settled in to help me deal with surgery and post surgical needs.
We were up until close to 2 am, and I was glad to be able to sleep as long as I needed to after that, instead of getting up at 5:45 and then trying to work a half day.
My support crew (Dave and Cathy) took me to the hospital today for a preliminary EKG, and for what turned out to be the sentinel node procedures. All they told Dave was that it was a lymph node scan, so neither of us realized it was sentinel node, which is probably GOOD, because I was dreading that, and had I known it was today, I would have been FAR more anxious.
I was under the impression it would be done pre surgically, as in while I was IN the O/R.
Sentinel node mapping is something that wasn't available even to my sister 10 or so years ago. I am lucky that I have that extra bit of technology on my side.
They inject radioactive dye into the nipple area (which was why I was dreading it. It was AWFUL, but I got through it way better than all of the previous needles jammed into my most sensitive bits). I got two injections per breast.
Then you have to massage yourself every 5 minutes for the better part of an hour, and then you lie on a table and get pictures taken. No claustrophobia-inducing tube this time, though.
This shows the surgeon the node or nodes that are first in line to take out. It helps avoid removal of ALL of the nodes if that isn't fully necessary. It potentially makes post op recovery a lot easier in the long term.
Then we stopped at my eye doctor's office to get my glasses fixed (they fell apart the other night....just like right before my wedding!).
Now we are home, and I can relax. Cathy and Dave are now in charge of getting food ready, cleaning up, and whatever else needs to be done.
If it weren't so chilly out, I'd want to get in the hot tub, since it's my last chance for a good while. Might do it anyway. We'll see.
SO...tomorrow morning, I say good bye to my beautiful breasts. I have no qualms about losing them. They have served me well. They have been appreciated and loved and cared for. Adored, even. Sources of beauty and pleasure.
But they got a disease, and sometimes, diseases need to be cut out. And I am asking everyone to join me in thanking them for their beauty and pleasure, and asking them to take their disease with them when they go, so that I may continue on, in perfect health, without them.
I will be flat chested now, with no intention of having reconstructive surgery done. I'm not interested in the months it takes to accomplish, all of the adjustments and appointments and tweaking and discomfort....Just. No.
I have no idea how that will play out, but I am thinking that I am strong enough to deal.
I have been so far.
Thank you, gentle reader, for your kind support and prayers/good thoughts/good wishes. I love each and every one of you.
Then, last night, a friend from the dance studio brought us a feast of roast chicken, home made mac and cheese, and salad. Perfect, because I have not made a menu or plan for this week....I am not focusing on anything like that right now. Only on the tasks at hand.
I was able to schedule all of today off from work, and that has been a HUGE blessing. We were up very late last night, and I had to go have preliminary tests today, so it's all worked out perfectly.
Cathy Carroll arrived from Washington state at midnight last night, and is settled in to help me deal with surgery and post surgical needs.
We were up until close to 2 am, and I was glad to be able to sleep as long as I needed to after that, instead of getting up at 5:45 and then trying to work a half day.
My support crew (Dave and Cathy) took me to the hospital today for a preliminary EKG, and for what turned out to be the sentinel node procedures. All they told Dave was that it was a lymph node scan, so neither of us realized it was sentinel node, which is probably GOOD, because I was dreading that, and had I known it was today, I would have been FAR more anxious.
I was under the impression it would be done pre surgically, as in while I was IN the O/R.
Sentinel node mapping is something that wasn't available even to my sister 10 or so years ago. I am lucky that I have that extra bit of technology on my side.
They inject radioactive dye into the nipple area (which was why I was dreading it. It was AWFUL, but I got through it way better than all of the previous needles jammed into my most sensitive bits). I got two injections per breast.
Then you have to massage yourself every 5 minutes for the better part of an hour, and then you lie on a table and get pictures taken. No claustrophobia-inducing tube this time, though.
This shows the surgeon the node or nodes that are first in line to take out. It helps avoid removal of ALL of the nodes if that isn't fully necessary. It potentially makes post op recovery a lot easier in the long term.
Then we stopped at my eye doctor's office to get my glasses fixed (they fell apart the other night....just like right before my wedding!).
Now we are home, and I can relax. Cathy and Dave are now in charge of getting food ready, cleaning up, and whatever else needs to be done.
If it weren't so chilly out, I'd want to get in the hot tub, since it's my last chance for a good while. Might do it anyway. We'll see.
SO...tomorrow morning, I say good bye to my beautiful breasts. I have no qualms about losing them. They have served me well. They have been appreciated and loved and cared for. Adored, even. Sources of beauty and pleasure.
But they got a disease, and sometimes, diseases need to be cut out. And I am asking everyone to join me in thanking them for their beauty and pleasure, and asking them to take their disease with them when they go, so that I may continue on, in perfect health, without them.
I will be flat chested now, with no intention of having reconstructive surgery done. I'm not interested in the months it takes to accomplish, all of the adjustments and appointments and tweaking and discomfort....Just. No.
I have no idea how that will play out, but I am thinking that I am strong enough to deal.
I have been so far.
Thank you, gentle reader, for your kind support and prayers/good thoughts/good wishes. I love each and every one of you.
Written by one of my very best friends
Dear Paula's Boobs,
You betrayed us all when you tried to kill Paula. Her minions just don't tolerate that kind of behavior, you know. You have been sentenced, and you have less than 48 hours left to be attached to one of the most wonderful people around. I know you will be missed, but it is simply unforgivable how you turned on the person who has taken care of you all these years...making sure you were properly supported, getting you checked out every year to make sure you were healthy. I mean, seriously. How could you do such a thing? Yes, you'll be missed....every time she tries on a shirt. Every time she sees the empty space where her bras used to live. Every time she catches her profile in a mirror. Every time she slips a couple prostheses into her dance costume. Every time one of us sees her and inadvertently glances at where you used to be. Every time she hugs someone and her boobs aren't in the way. But you know what? The tiny pang of missing you is NOTHING compared to the joy that comes from NOT having to miss HER. So....goodbye boobies. You and your little lymph node friends can just go away. Buh-bye. In the big picture, you won't be missed THAT much. We get to keep Paula, which is all we really want.
(Not) Yours Truly,
Jessie
Jessie
Sunday, April 12, 2015
Surgery is Wednesday
The follow up PET scan showed mixed results, but for the most part, I am responding extremely well to chemotherapy, with a reduction and elimination of much of the first sites that were discovered.
There is just one area where the cells have mutated beyond our original medications' reach.
The breast tissue is ready for removal, and the lymph nodes that were previously palpable are now no longer in evidence.
Surgery is finally on the books.
Wednesday April 15, I will have a bilateral sentinel node procedure, a bilateral mastectomy, lymph dissections, and installation of a chemotherapy port.
There is just one area where the cells have mutated beyond our original medications' reach.
The breast tissue is ready for removal, and the lymph nodes that were previously palpable are now no longer in evidence.
Surgery is finally on the books.
Wednesday April 15, I will have a bilateral sentinel node procedure, a bilateral mastectomy, lymph dissections, and installation of a chemotherapy port.
I have to go in the day before and have a lymph scan and an EKG, so I will work tomorrow, and be off then for about 3 weeks, much of it without pay.
FMLA papers were filed in February, so the job will be there when I got back, but the City of Tulsa, for which I technically work, does not offer short term disability.
FMLA papers were filed in February, so the job will be there when I got back, but the City of Tulsa, for which I technically work, does not offer short term disability.
Today, I will figure out some way to say good bye and thanks to my previously much loved, cared for, and beautiful 34D's that are now trying to kill me.
The oncologist said that I will return to chemotherapy 4 weeks after surgery to begin a new round of four treatments with a change in the medication in order to address the small portion of the cancer that did not respond favorably to the first four rounds.
This new concoction of medication will also continue to attack the rest of the other sites that have shown favorable response so far.
All in all, I am kicking ass.
The oncologist said that I will return to chemotherapy 4 weeks after surgery to begin a new round of four treatments with a change in the medication in order to address the small portion of the cancer that did not respond favorably to the first four rounds.
This new concoction of medication will also continue to attack the rest of the other sites that have shown favorable response so far.
All in all, I am kicking ass.
We had a day of deep house cleaning yesterday.
My friend Julie came over and did windows, sills, and blinds.
I got out the dust mop and the mop and got underneath everything with both. I dusted EVERYWHERE, vacuumed with the real vacuum (not just the mini vac).
We only have one rug in the bedroom, and one in the laundry room, where the litter boxes are---but the back cat hair shows on the one in the bedroom, and the litter gets all over the laundry room...so the real vacuum has to come out pretty frequently anyway.
Dave emptied and washed down the litter boxes, fixed the dryer vent, and dusted the ceiling fans.
I was so tired and sore last night, but it was something that had to be done before I have people staying with us over the next two weeks. AN hour in our little hot tub last night did the trick, and I finally got some decent sleep last night.
The house cleaning needed to be done anyway, but I put it off for just before surgery for a reason, and I am glad I did.
Today, we will attack the kitchen, junk piles (mostly paper and electronics stuff) on top of the book case in the dining room, get my massage room transformed into the air bed guest room, clean the bathroom, and THEN we will be done.
The one thing I wish I could have done before Colleen and Carrie came for their surprise visit was get the massage room ready. Oh well. They didn't care.
I also need to write out checks for the bills that have to be mailed out on the day of my surgery, and get receipts entered into the check book, and figure out what to pack in my overnight bag for the hospital.
The girls from the dance studio gave me a gift certificate for a pedicure back in January. I redeemed it yesterday, and got my feet and lower legs pampered. No colored toe nail polish, though. Seems that's not allowed when going in for surgery. Who knew? Not me, until I was sitting in the pedi chair and someone mentioned it on facebook.
My dear and long time friend Cathy Carroll arrives Monday night. She is an excellent care giver, a breast cancer survivor, and is retired, so could come at any time. She will be here for the first leg of my surgical journey.
Then, on the 22nd, my sister arrives for a few days to help out. I can't wait to see her, and for her to finally see our house!
Local friends are said to be bringing food by, and many have offered to run errands or do whatever might be needed.
I am so very fortunate to be so loved and cared for!
Sunday, April 5, 2015
Missed the lunar eclipse and other news
I had heard that there was to be a lunar eclipse on April 4. I am not good at figuring out what time we are in comparison to GMT, and I made the mistake of not reading any links or articles about the eclipse.
None of the posts or headlines that I saw said PRE DAWN on April 4, so one would assume the NIGHT of April 4, yes?
Oh well.
We enjoyed a lovely evening in the hot tub, under the non-eclipsed full moon, just the same.
Surgical consult was last Tuesday. The surgeon examined my breasts and lymph nodes manually and declared that they are much improved from January, and that surgery is now possible.
But then she asked me to get a follow up PET scan, which I do recall the oncologist mentioning way back at the beginning of this journey.
I am not sure why the follow up PET was not already scheduled before the surgical consult, if it was a requirement for decision making.
The surgeon put sort of a dismal spin on things, though, by saying that if the metastases are not responding to the chemotherapy as well as the breast and lymph tumors did, then there isn't really any reason to proceed with surgery.
Surgery, for lack of a gentle way to put it, won't impact my chances of survival.
So, all these past few days, her words have been ringing in my head.
Of course, I strive to stay positive, and keep telling myself that there is NO reason to believe that the other sites have not responded as well as the breasts have, since the cells at the other sites came from the breasts.
Logically, the PET should reveal that there is a good response everywhere.
I try to keep hold of that.
It took a few days for the PET to be scheduled, and it is set up for Tuesday morning. Next Thursday is day 21 since my last treatment, and the oncology nurse stressed a couple of times that surgery needs to happen between 21 and 28 days after the last treatment.
If the "mets" are responding well, we will proceed with the mastectomies, and will have to schedule surgery immediately.
If they are not, I guess the oncologist continues to prescribe chemotherapy. I also guess I would still have to have the port installed surgically, even if I don't have the mastectomies.
I don't know.
SO once again, the not knowing, and the waiting (and the worry about waiting TOO LONG because of the 28 day time window), have brought anxiety back to the forefront of my daily state of being.
As I said, though, I am striving to remain positive and hopeful.
My side effects from this last round of chemotherapy have continued to be more pronounced. My appetite is fickle at best, and I had that weird pain in my trachea again yesterday. My mouth is much better, but not back to normal. During previous cycles, it would get back to normal after 10 or 12 days.
For the most part, though, I can't complain. The fears that we all had at the outset of me being sick all the time, and turning into a weak stick person, have not been realized, and for that I am grateful.
I have not been working out as much, but I have still been doing it. I've been taking walks when the weather has been good, too.
My office was closed Friday for Good Friday, so Dave took a vacation day too, and we had the electrician come and install our new kitchen light that morning. We got out and did all of our errands, too, so that we could relax all weekend.
Yesterday, we went to a couple of thrift stores, worked around the house a bit, and visited a local brewery.
It's Easter Sunday, so to those who mark the occasion with celebration, please enjoy!
For us, it's the third day of a three day weekend, and we have no plans other than puttering around the house, hoping the cloudy day brings rain, and trying to relax. Since I haven't done one since Thursday, I may also do a bit of a work out today.
None of the posts or headlines that I saw said PRE DAWN on April 4, so one would assume the NIGHT of April 4, yes?
Oh well.
We enjoyed a lovely evening in the hot tub, under the non-eclipsed full moon, just the same.
Surgical consult was last Tuesday. The surgeon examined my breasts and lymph nodes manually and declared that they are much improved from January, and that surgery is now possible.
But then she asked me to get a follow up PET scan, which I do recall the oncologist mentioning way back at the beginning of this journey.
I am not sure why the follow up PET was not already scheduled before the surgical consult, if it was a requirement for decision making.
The surgeon put sort of a dismal spin on things, though, by saying that if the metastases are not responding to the chemotherapy as well as the breast and lymph tumors did, then there isn't really any reason to proceed with surgery.
Surgery, for lack of a gentle way to put it, won't impact my chances of survival.
So, all these past few days, her words have been ringing in my head.
Of course, I strive to stay positive, and keep telling myself that there is NO reason to believe that the other sites have not responded as well as the breasts have, since the cells at the other sites came from the breasts.
Logically, the PET should reveal that there is a good response everywhere.
I try to keep hold of that.
It took a few days for the PET to be scheduled, and it is set up for Tuesday morning. Next Thursday is day 21 since my last treatment, and the oncology nurse stressed a couple of times that surgery needs to happen between 21 and 28 days after the last treatment.
If the "mets" are responding well, we will proceed with the mastectomies, and will have to schedule surgery immediately.
If they are not, I guess the oncologist continues to prescribe chemotherapy. I also guess I would still have to have the port installed surgically, even if I don't have the mastectomies.
I don't know.
SO once again, the not knowing, and the waiting (and the worry about waiting TOO LONG because of the 28 day time window), have brought anxiety back to the forefront of my daily state of being.
As I said, though, I am striving to remain positive and hopeful.
My side effects from this last round of chemotherapy have continued to be more pronounced. My appetite is fickle at best, and I had that weird pain in my trachea again yesterday. My mouth is much better, but not back to normal. During previous cycles, it would get back to normal after 10 or 12 days.
For the most part, though, I can't complain. The fears that we all had at the outset of me being sick all the time, and turning into a weak stick person, have not been realized, and for that I am grateful.
I have not been working out as much, but I have still been doing it. I've been taking walks when the weather has been good, too.
My office was closed Friday for Good Friday, so Dave took a vacation day too, and we had the electrician come and install our new kitchen light that morning. We got out and did all of our errands, too, so that we could relax all weekend.
Yesterday, we went to a couple of thrift stores, worked around the house a bit, and visited a local brewery.
It's Easter Sunday, so to those who mark the occasion with celebration, please enjoy!
For us, it's the third day of a three day weekend, and we have no plans other than puttering around the house, hoping the cloudy day brings rain, and trying to relax. Since I haven't done one since Thursday, I may also do a bit of a work out today.
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