2018 can officially suck a bag of dicks.
Okay it hasn't been all bad but the past few months have been horrible. Early morning on the 21st, I stayed up late in order to flip back to nights with Shaun. I didn't have long until I had to get up and go to chemo so instead of taking a sleeping pill, I took a benzo. Those put me out for 4 hours, almost to the minute. Perfect. Then Shaun asks me which cat(s) are in the room with me. Just Noodle. He says River is meowing and he can't find her. I got up to help him look and we found her way back in the office inside a wooden crate originally intended for a place for the kitties to hang out in while we were in there but they never used it, so it was odd to see her in there. As I approached her she didn't move but just started meowing like crazy. Not like "Oh hi Mom!" but "Something is wrong. I'm scared. Help me!" I was actually a little nervous to pet her because I've seen her when she's in pain and scared at the same time and she kind of loses her mind. She didn't bite or hiss though. She just kept meowing while I petted her and talked to her. It dawned on me that perhaps the problem was that she couldn't actually get up and walk.
I pulled her from the crate and her back legs were totally flaccid. The second she got near the rug she started trying to drag herself using her front paws alone, to hide. I couldn't find any indication that anything was wrong with her spine. I had no clue what was happening or how she even got in that crate since it has a good 5" clearing to crawl inside. That's a question I doubt I'll ever get an answer to.
Shaun was freaking out and I had to ask him to try to remain calm since kitties are so sensitive to our emotions. I knew she was scared and didn't want to make things worse. I calmly talked to her, petted her and kissed her while Shaun started making phone calls. We found a 24 hour vet to take her to. She cried the entire time.
After telling the vet her history of her cough, he agreed with our suspected diagnosis of CHF and had a hunch about what was wrong with her. If it was what he thought it was, they would need only to take a blood sugar reading from a front leg and back leg. His hunch was right. Her front leg blood sugar was in the 500's. The back leg was in the 100's. He explained why that was but what it boiled down to was she had a blood clot that had formed in her aorta, blocking the flow to the lower half of her body. He explained that there were some things they could try that may work but they would be temporary solutions and most likely would not work. He said it would take daily meds to maintain, assuming it did work and that the problem would keep occurring.
This is the problem with a kitty like River. When I first spotted her at the rescue, she hated humans. Big red letters on her paper said "NEEDS SOCIALIZATION' or something to that effect. She was like a feral kitty. She loved other kitties but did not like humans. I wanted her anyway and was perfectly fine with just making sure she had every need met. They had to chase her all around the room, her hissing and growling and screeching the whole time. Her trust was hard won and it didn't take much to lose it, so things like vet trips and meds required us to chase her around the house until she was exhausted and terrified of us. It would set her back a lot in regards to trusting us and feeling safe. So instead, we would only take her to the vet when something was wrong and we'd opt for longer acting meds that cost more. It was better for everyone.
We asked the doc if she was in pain or just scared. He said she was definitely in pain. We opted to have her euthanized. I was so hoping the answer was some type of deficiency that could be fixed with an IV. Shaun feared the worst and he was right. We just wanted her to stop hurting.
Shaun cradled her head while I talked to her softly and pet and kissed her. She never stopped meowing until it was over. We talked to them about cremation and such but I remembered handing my dead son over to the coroner and not wanting to let go of him. I decided I didn't want to let go of River and wanted to take her home with us. We had to drive to another 24 hour place further into Austin to get the clay paw print thing that some places do. They didn't charge us for it. We were both a mess, bawling non stop. I just wanted to hold her as long as I could.
When we got her home I called Noodle over so he would understand that River was dead so he wouldn't just be wondering what happened to her. They got along pretty well when she was alive. I opened the bag a little and exposed some of her fur. He walked around the bag sniffing it and finally got to her fur. He buried his nose in her fur and really smelled her. I think he understood. Shaun insisted on digging the hole right away and didn't want any help with it. I picked the spot, under the tree with the hanging bird feeders, in front of the catio. He dug the hole and Noodle sat by her body the whole time and we all said our goodbyes to that sweet wild girl.
Last week she wanted so many pets and loves from us, she'd lay right between us on the bed and gently paw each of us to pet her. She went back and forth pawing each of us for more pets. She loved my kisses and would roll around and purr. She wasn't particularly outgoing. She did love her lovins but anytime she sensed she might be in a tight spot, she'd bolt. She hated being held or picked up and she got overwhelmed easily with too much stimulation, but we always loved her unconditionally and on her own terms. I do feel that she had a good life, even though it was only 7 years long. She was deeply embedded in both our hearts.
Shaun has taken this especially hard. Not only had he never had to have a pet euthanized but he felt a pretty deep soul connection with her. There's been some crying off and on, lots of talking about memories of her and general feelings of blah and sadness. He didn't want any holiday decor out anymore so we took it all down last night. I honestly didn't think that would help but he said it did so it was worth it. He said he never understood how people would be so depressed after their pet died but he gets it now. I guess he just never had that strong bond before. We have a digital picture frame that changes pics every few seconds and it's turned off. I don't know when it will be turned on again but right now he can't see pics of her without losing it.
I know things like this take time. We will get through it together.
Monday, December 24, 2018
Wednesday, December 19, 2018
Mastectomy and radiation
I'm here! I got really busy and then out of the habit of updating my blogger so I'm dong it now.
So I had my double mastectomy on November 12th. My mom flew down the day before. My surgery went really well and I was really surprised at how much of my tats were still there. Instead of cutting right through the middle of them, the doc went from the bottom. Now they just look like they could be partially submerged in water... if you visualize water under them. I might do something like that some day but at this time, I just don't feel like showing them anymore. I mean, she did a great job but mastectomies like this don't look good. It's not something that makes me feel better about my body so it's more like I just have to get used to my new body and let it go. For a few years of my life I loved my body. It was nice while it lasted and now it's gone. Moving on.
I had a drain tube in each side and the left side, the side that has never had cancer, hurt like hell. It felt like someone held a spatula to the stove and then pressed it to my chest. HORRIBLE. It was right up there with the level of pain I experienced with frozen shoulder. Nothing really helped with it much except getting the fucking thing out. I went to the doc's assistant several days later and it wasn't draining much so I asked her to take it out. She said she was worried about a seroma (fluid build up under the skin). Bitch, this is not my first rodeo. If I get a seroma then suck it out with a syringe later. Get this fucking thing out of me NOW. She took it out and gave a tsk tsk seeing a blood clot in the tubing. Don't care! That burning pain stopped immediately. Did I get a seroma? Yes... BUT, it didn't hurt. It looked like a tiny water bed. I press one spot, it makes waves over the another spot. It's pretty amusing to me to be honest. I didn't get the right side out that day but that side didn't hurt so whatevs. I wore a tight binder around my chest for another couple of weeks and it went away. Good bye fun little water bed!
While my mom was in town, I wanted to do some fun things so that was fun, trying to find ways to hide a drain bulb that had delicous red lymph juice. With pulp! Yum! We went to Fredricksburg because I've always wanted to see it during Xmas season. It's a cute little German town that is popular during the Xmas season. I didn't realize just HOW popular it was. There was absolutely nowhere to park. Shaun ended up dropping us off at an intersection and met up with us later. He ended up parking at the visitor's center. I've never seen a town's visitor center that busy before. There were some pretty neat things there from Germany though. They were all super expensive but it was still neat to see them. Maybe some day, when I'm rolling in dough, I'll invest in one of the cool German things. It was mostly useless nick nacks, ie clutter, so it's all good. We are kind of in poverty mode right now because of all the copays and me being off work for a few months.
Speaking of which, it took a month for my short term disability people to even give me an answer about if or when my disability would kick in. It was stressing me out. I mean if it's a no, then TELL ME already so I can get my ass back to work. I just barely found out a few days ago that they approved me until January 10th. That will probably be when I'm at my worst but I can always change it if I need to.
I have to say, my mastectomy surgery was WAY easier this time than when I got the DIEP Flap. I mean duh, it was way less cutting and moving things around but more than that, just driving home after surgery last time was absolute agony because boobs bounce and those little bounces hurt. Now I have the chest of a 12 year old boy and nothing bounces so it's way less painful. Also I did not miss having to sleep on my back without moving. It really sucks when you can't roll around. It hurts to stay in the same position all the time.
I'm also super thankful to my awesome cuz who sent me some edibles. While they didn't do a lot for the sharp pains, they do help with achiness, sleep and anxiety while my mother was here. That woman... Seriously, I thought about slipping her an edible just to get her to re-fucking-lax but I know that's not cool to do to someone and also I really didn't want to share them with her. She is such a busy body and cannot sit still. Also when she's up constantly running around, she's always had the expectation that every other able bodied person around should be busy at the same time. It's always been that way. Shaun was going through a pretty bad depression and was sleeping a lot. When he wasn't sleeping he spent a lot of time on his tablet. I personally did not like that he was doing this but I concentrated more on trying to find what could help him feel better and my mom was more focused on being judgy of him being lazy and disconnected. It was like seeing a slow train wreck happening so I did my best to intervene to make things go more smoothly because she still had a long time before she was leaving. I didn't want things to blow up like last time. She doesn't understand depression in people. She doesn't process things that way. When she's down it comes out as anxiety and keeping busy. That's how she copes. That's all she understands. Shaun did go to the doc and got some meds changed around that helped and all it took was that and me picking on him a bit. When I do that she always rushes to his defense, so things got better. Me taking the edibles and keeping her plied with wine helped get through those days. I did have to stop talking about news stories out loud, which was hard. It's just something I do when Shaun's home but doing it with my mom was only causing more tension. Her husband is a dump lover and she thinks my step-dad is just the most intelligent man in the world so he must be on to something. UGH. It just makes me want to puke. She did spend a large portion of her time obsessing over what was going on in her house over the Thanksgiving weekend. She spent hours looking through the security cams all over the house. It was making Shaun mad because she was giving off the vibe like she'd so much rather be there than with me but I wasn't butt hurt about it. I kinda wanted her to be there too. LOL! I saw a side of her that was pretty ugly but I think to her it was just normal behavior. I don't want to get into it really but let's just say it was rather interesting to see the other side when I'm used to being the recipient of that behavior. Yuck.
There was one funny part though. Well she didn't think it was funny but we were discussing my cuz and her mom who stayed with her until there was about to be bloodshed and she was moved into an apartment. My cuz has a dark sense of humor, which is partly what I love about her. She put up a tree for the holidays where her mom's pretty doves were hung but she also hung her own ornaments which consisted of bloody eyeballs and fake body parts. My mom was going off about this and how horrible it was and I could not stop laughing about it. I may have had an edible on board but that's beside the point. No matter how my mom phrased it to try to win me over to her side, I had to finally beg her to stop because I could not stop laughing! I still want to laugh about it. Then after she decorated my entire tree for me, I helped her hang my eyeball ornaments last of all. Ha!
We got through it in one piece and it ended on a good note with a hug and a huge sigh of relief when we pulled away from the airport.
The tube on my right side took longer to stop draining so I had to postpone my appointment with the radiologist. They wanted me to come in and get some initial things done to get me ready for radiation but they couldn't do it as long as I had a drain tube in. Finally I went and that was interesting. They put stickers on me with little X's drawn with markers. There were red laser lines showing on my chest and a regular light where they marked out the targeted areas. They put coordinates in the machine so it beams the precise strength in the precise areas. They had me lay on a type of bean bag. They positioned me in just the right way and then sucked the air out of the bag, making a mold of my body. Then every time I went in they would take the body mold out and I'd lay on it. I cannot feel when the radiation is going in. I just lay on a table and the machine moves around me and sometimes there's a long beep, which I think is when the actual radiation is going in. There's a really thick, heavy door to the room. It's like a vault door but without the wheels. Seriously, it's maybe 10" thick or something. Crazy. There are cameras all over the room... maybe around 10. They leave the room when the treatment begins so it's just in there with the robot machine. I happen to turn my head a certain way where I can see several computer screens. One section says "mid" a bunch of times and then the rest seems to be coordinates. Those numbers change as the arms of the machine move around me. Every Wednesday I have a quick check in with the doc and every other day they lay a big square slab of what seems like some type of sticky gelatin/rubbery thing. They said the radiation will normally go deeper than the skin and treat inside the body but because of where my tumor was, they also want to treat my skin so the square thing is laid on my chest and tricks the machine into thinking it's going past my skin when really it's just going past the "slab". That's what I call it. It goes past the slab and gets my skin.
I'm a week and a half into it so far, and I've had tiny glimpses of burning sensations but it goes away. My skin is just a little pink. The main area where the tumor was is totally numb to touch and pressure. It's also getting tougher there... like if you pressed on your skin and then moved your finger around, your skin is able to slide around a bit over your bones and muscles right? Mine doesn't there. It feels like a warm corpse in that spot. Very weird. Since I can't feel it, it's like feeling someone else's body. But hey, it doesn't hurt so yay!
I also saw that they had a bunch of cool body molds but for brain cancer. The people had to lay on their stomachs and put their face in a mold. The face molds were SO COOL! They said if someone doesn't want theirs when it's done, they will let me have their face mold. Fuck yes! I could do something cool with one of those! It's mesh like on a cast but just one layer so it has lots of breathability to it. I wish I could do those on my own but I'm sure it's some kind of pricey medical grade stuff. We'll see if I can get my hands on one.
So I have 5 more weeks of radiation, 5 days a week and each time it only takes maybe 10 minutes. It's real quick. Shaun went back to work a few days ago. He's on days this week and then he will assume his new position as captain on the night shift. I will probably at least partially flip with him when he does so we can spend some time together. It was really great getting to spend so much time with him. It was also nice to be on day shift hours during that time so we could get out and do things that normally we couldn't before, because most of it was right in the middle of our sleeping time.
We've gone to several Xmas type festivals. I did get some dill pickle popcorn which tore up my mouth from the acidity but totally worth it! Shaun got a hand-knitted Slytherin scarf he will cherish forever.
One last thing I'll briefly mention. My "bff" is no longer my friend. At this point in time, I'm not going to waste more precious energy on her talking much about it since I've pretty much wasted way too much on her already the past few years. Shaun and I hit our limit and I promised myself that I would never again spend a bunch of energy trying to make someone like/love me when they don't. No more excuses for her. Some relationships have an expiration date and this was one of those. I wish her all the best in her endeavors.
So I had my double mastectomy on November 12th. My mom flew down the day before. My surgery went really well and I was really surprised at how much of my tats were still there. Instead of cutting right through the middle of them, the doc went from the bottom. Now they just look like they could be partially submerged in water... if you visualize water under them. I might do something like that some day but at this time, I just don't feel like showing them anymore. I mean, she did a great job but mastectomies like this don't look good. It's not something that makes me feel better about my body so it's more like I just have to get used to my new body and let it go. For a few years of my life I loved my body. It was nice while it lasted and now it's gone. Moving on.
I had a drain tube in each side and the left side, the side that has never had cancer, hurt like hell. It felt like someone held a spatula to the stove and then pressed it to my chest. HORRIBLE. It was right up there with the level of pain I experienced with frozen shoulder. Nothing really helped with it much except getting the fucking thing out. I went to the doc's assistant several days later and it wasn't draining much so I asked her to take it out. She said she was worried about a seroma (fluid build up under the skin). Bitch, this is not my first rodeo. If I get a seroma then suck it out with a syringe later. Get this fucking thing out of me NOW. She took it out and gave a tsk tsk seeing a blood clot in the tubing. Don't care! That burning pain stopped immediately. Did I get a seroma? Yes... BUT, it didn't hurt. It looked like a tiny water bed. I press one spot, it makes waves over the another spot. It's pretty amusing to me to be honest. I didn't get the right side out that day but that side didn't hurt so whatevs. I wore a tight binder around my chest for another couple of weeks and it went away. Good bye fun little water bed!
While my mom was in town, I wanted to do some fun things so that was fun, trying to find ways to hide a drain bulb that had delicous red lymph juice. With pulp! Yum! We went to Fredricksburg because I've always wanted to see it during Xmas season. It's a cute little German town that is popular during the Xmas season. I didn't realize just HOW popular it was. There was absolutely nowhere to park. Shaun ended up dropping us off at an intersection and met up with us later. He ended up parking at the visitor's center. I've never seen a town's visitor center that busy before. There were some pretty neat things there from Germany though. They were all super expensive but it was still neat to see them. Maybe some day, when I'm rolling in dough, I'll invest in one of the cool German things. It was mostly useless nick nacks, ie clutter, so it's all good. We are kind of in poverty mode right now because of all the copays and me being off work for a few months.
Speaking of which, it took a month for my short term disability people to even give me an answer about if or when my disability would kick in. It was stressing me out. I mean if it's a no, then TELL ME already so I can get my ass back to work. I just barely found out a few days ago that they approved me until January 10th. That will probably be when I'm at my worst but I can always change it if I need to.
I have to say, my mastectomy surgery was WAY easier this time than when I got the DIEP Flap. I mean duh, it was way less cutting and moving things around but more than that, just driving home after surgery last time was absolute agony because boobs bounce and those little bounces hurt. Now I have the chest of a 12 year old boy and nothing bounces so it's way less painful. Also I did not miss having to sleep on my back without moving. It really sucks when you can't roll around. It hurts to stay in the same position all the time.
I'm also super thankful to my awesome cuz who sent me some edibles. While they didn't do a lot for the sharp pains, they do help with achiness, sleep and anxiety while my mother was here. That woman... Seriously, I thought about slipping her an edible just to get her to re-fucking-lax but I know that's not cool to do to someone and also I really didn't want to share them with her. She is such a busy body and cannot sit still. Also when she's up constantly running around, she's always had the expectation that every other able bodied person around should be busy at the same time. It's always been that way. Shaun was going through a pretty bad depression and was sleeping a lot. When he wasn't sleeping he spent a lot of time on his tablet. I personally did not like that he was doing this but I concentrated more on trying to find what could help him feel better and my mom was more focused on being judgy of him being lazy and disconnected. It was like seeing a slow train wreck happening so I did my best to intervene to make things go more smoothly because she still had a long time before she was leaving. I didn't want things to blow up like last time. She doesn't understand depression in people. She doesn't process things that way. When she's down it comes out as anxiety and keeping busy. That's how she copes. That's all she understands. Shaun did go to the doc and got some meds changed around that helped and all it took was that and me picking on him a bit. When I do that she always rushes to his defense, so things got better. Me taking the edibles and keeping her plied with wine helped get through those days. I did have to stop talking about news stories out loud, which was hard. It's just something I do when Shaun's home but doing it with my mom was only causing more tension. Her husband is a dump lover and she thinks my step-dad is just the most intelligent man in the world so he must be on to something. UGH. It just makes me want to puke. She did spend a large portion of her time obsessing over what was going on in her house over the Thanksgiving weekend. She spent hours looking through the security cams all over the house. It was making Shaun mad because she was giving off the vibe like she'd so much rather be there than with me but I wasn't butt hurt about it. I kinda wanted her to be there too. LOL! I saw a side of her that was pretty ugly but I think to her it was just normal behavior. I don't want to get into it really but let's just say it was rather interesting to see the other side when I'm used to being the recipient of that behavior. Yuck.
There was one funny part though. Well she didn't think it was funny but we were discussing my cuz and her mom who stayed with her until there was about to be bloodshed and she was moved into an apartment. My cuz has a dark sense of humor, which is partly what I love about her. She put up a tree for the holidays where her mom's pretty doves were hung but she also hung her own ornaments which consisted of bloody eyeballs and fake body parts. My mom was going off about this and how horrible it was and I could not stop laughing about it. I may have had an edible on board but that's beside the point. No matter how my mom phrased it to try to win me over to her side, I had to finally beg her to stop because I could not stop laughing! I still want to laugh about it. Then after she decorated my entire tree for me, I helped her hang my eyeball ornaments last of all. Ha!
We got through it in one piece and it ended on a good note with a hug and a huge sigh of relief when we pulled away from the airport.
The tube on my right side took longer to stop draining so I had to postpone my appointment with the radiologist. They wanted me to come in and get some initial things done to get me ready for radiation but they couldn't do it as long as I had a drain tube in. Finally I went and that was interesting. They put stickers on me with little X's drawn with markers. There were red laser lines showing on my chest and a regular light where they marked out the targeted areas. They put coordinates in the machine so it beams the precise strength in the precise areas. They had me lay on a type of bean bag. They positioned me in just the right way and then sucked the air out of the bag, making a mold of my body. Then every time I went in they would take the body mold out and I'd lay on it. I cannot feel when the radiation is going in. I just lay on a table and the machine moves around me and sometimes there's a long beep, which I think is when the actual radiation is going in. There's a really thick, heavy door to the room. It's like a vault door but without the wheels. Seriously, it's maybe 10" thick or something. Crazy. There are cameras all over the room... maybe around 10. They leave the room when the treatment begins so it's just in there with the robot machine. I happen to turn my head a certain way where I can see several computer screens. One section says "mid" a bunch of times and then the rest seems to be coordinates. Those numbers change as the arms of the machine move around me. Every Wednesday I have a quick check in with the doc and every other day they lay a big square slab of what seems like some type of sticky gelatin/rubbery thing. They said the radiation will normally go deeper than the skin and treat inside the body but because of where my tumor was, they also want to treat my skin so the square thing is laid on my chest and tricks the machine into thinking it's going past my skin when really it's just going past the "slab". That's what I call it. It goes past the slab and gets my skin.
I'm a week and a half into it so far, and I've had tiny glimpses of burning sensations but it goes away. My skin is just a little pink. The main area where the tumor was is totally numb to touch and pressure. It's also getting tougher there... like if you pressed on your skin and then moved your finger around, your skin is able to slide around a bit over your bones and muscles right? Mine doesn't there. It feels like a warm corpse in that spot. Very weird. Since I can't feel it, it's like feeling someone else's body. But hey, it doesn't hurt so yay!
I also saw that they had a bunch of cool body molds but for brain cancer. The people had to lay on their stomachs and put their face in a mold. The face molds were SO COOL! They said if someone doesn't want theirs when it's done, they will let me have their face mold. Fuck yes! I could do something cool with one of those! It's mesh like on a cast but just one layer so it has lots of breathability to it. I wish I could do those on my own but I'm sure it's some kind of pricey medical grade stuff. We'll see if I can get my hands on one.
So I have 5 more weeks of radiation, 5 days a week and each time it only takes maybe 10 minutes. It's real quick. Shaun went back to work a few days ago. He's on days this week and then he will assume his new position as captain on the night shift. I will probably at least partially flip with him when he does so we can spend some time together. It was really great getting to spend so much time with him. It was also nice to be on day shift hours during that time so we could get out and do things that normally we couldn't before, because most of it was right in the middle of our sleeping time.
We've gone to several Xmas type festivals. I did get some dill pickle popcorn which tore up my mouth from the acidity but totally worth it! Shaun got a hand-knitted Slytherin scarf he will cherish forever.
One last thing I'll briefly mention. My "bff" is no longer my friend. At this point in time, I'm not going to waste more precious energy on her talking much about it since I've pretty much wasted way too much on her already the past few years. Shaun and I hit our limit and I promised myself that I would never again spend a bunch of energy trying to make someone like/love me when they don't. No more excuses for her. Some relationships have an expiration date and this was one of those. I wish her all the best in her endeavors.
Thursday, November 8, 2018
Better living through chemistry
I completely lost my shit on pre-op day. I had two pre-op appointments back to back and was barely running on time. Then I nearly got there and there was a big wreck on a very skinny street. I was growing very short of time and Shaun, who makes a living knowing the streets of Austin and where everything is, told me to take a turn that was the wrong way, forcing me to do a U-turn and have to cross over the other side of the wreck traffic. I completely went ballistic on him. He was super apologetic and I was a total bitch. My tirade continued with the hospital staff, first with the paperwork that always asks if I'm pregnant and how I know I'm not. They never have a box for my reason so in my irritation I drew a giant box and wrote "GAY" in giant letters. After calmly taking my paperwork to the clerk at the desk, she asks me my religion. I told her I hate religion and she's welcome to put that in my chart. Then I snerk a bit when I see her cross necklace. Totally not sorry. After taking us back to another room where I get my pre-op instructions, the lady tells me that I can't eat or drink anything past midnight. My surgery is scheduled for 2:00 pm. I said, "So if my surgery was scheduled at 8 am in the morning, when would I need to stop eating or drinking? She says midnight. I then ask how many hours before the surgery do I need to stop eating or drinking. She tells me midnight, just in case they move my surgery, say to the morning. I can't tell at that point if she was stupid or she thought I was. "If they were going to move my appointment to the morning, they would call me the night before to warn me, thus letting me know I really can't eat or drink anything past midnight." We continue our verbal tennis match and then I said, "That is some bullshit!" Another guy came in to continue the instructions. I'm not sure if that was the way it was intended or if she told him he had to take her place. Still not sorry!!!
After that appointment was over, I rushed over to the surgeon's office for my pre-op and asked her how many hours before the surgery until I need to stop eating or drinking? She says "8 to 10" hours. THANK YOU for actually answering my question honestly! Seriously, 14 hours of no eating and no drinking when my stomach is already the size of a walnut is going to make me much worse to be around than I was that day, not to mention good luck finding a vein that day due to extreme dehydration. My fingers are almost always pruny from dehydration even without restrictions placed on me.
Yesterday I took my pills at bedtime from my little pillbox and remembered that on one of the previous nights I had stolen a Cymbalta and forgot to replace it. I looked through the remaining boxes to see which one was missing the pill which gives me sanity. There were none missing. That means that within that past week, I took my pills and did not take my Cymbalta. Not trying to make an excuse here but I'm just saying... I'm pretty sure I know what day that was.
Needless to say, I was very sorry and apologetic to Shaun. Though he is an absolutely terrible navigator, he did not deserve anywhere near what I gave him. He was super understanding and forgiving, which I don't even really think I deserve but I sure am grateful to him for it. Sometimes I really don't know how I got so lucky with him.
After that appointment was over, I rushed over to the surgeon's office for my pre-op and asked her how many hours before the surgery until I need to stop eating or drinking? She says "8 to 10" hours. THANK YOU for actually answering my question honestly! Seriously, 14 hours of no eating and no drinking when my stomach is already the size of a walnut is going to make me much worse to be around than I was that day, not to mention good luck finding a vein that day due to extreme dehydration. My fingers are almost always pruny from dehydration even without restrictions placed on me.
Yesterday I took my pills at bedtime from my little pillbox and remembered that on one of the previous nights I had stolen a Cymbalta and forgot to replace it. I looked through the remaining boxes to see which one was missing the pill which gives me sanity. There were none missing. That means that within that past week, I took my pills and did not take my Cymbalta. Not trying to make an excuse here but I'm just saying... I'm pretty sure I know what day that was.
Needless to say, I was very sorry and apologetic to Shaun. Though he is an absolutely terrible navigator, he did not deserve anywhere near what I gave him. He was super understanding and forgiving, which I don't even really think I deserve but I sure am grateful to him for it. Sometimes I really don't know how I got so lucky with him.
Monday, November 5, 2018
How a "Strong" Person Survives
Slight update before the real post... I'm done with all my scans, which are all clear except a 3 mm lump in my liver. Okay sounds scary but in looking at my scans from 4 years ago, the lump was there then too. Likely it's benign, though it would have been nice to have been told about it 4 years ago and have it investigated further then. I met with the radiologist and was hoping to hear I'd just need a few treatments after the surgery but she wants 6 to 8 weeks of radiation, 5 days a week. I think I'm more scared of that than the surgery. Anyway, I'm feeling super overwhelmed inside and yet, still need to function and get things done. I do have my ways of getting through things like this so that's what this post is about.
Now for the actual blog post...
Two of my cousins messaged me a few days ago. They are sisters so I assume that wasn't a coincidence. Both totally well meaning but I found myself feeling very annoyed and on the surface, I wasn't sure exactly why. I was being asked a lot of questions not only regarding my surgery and cancer updates, but how I feel about them. I mean the obvious answer here is I was annoyed because people are so fucking lazy and dependent on Facebook for all info. I plainly state in my FB that my updates are in MeWe, but no, they need me to repeatedly update each and every single one of them personally through messenger. No. I have neither the time, energy or desire to do that.
It was more than that though. I was more annoyed by the questions about my emotions surrounding it. I had to think it over a few days before figuring it out. This is one of those "knowing myself" moments. The best thing I've ever done for myself is to figure out who I am and why I process things the way I do. It's a sort of ongoing therapy... a decluttering of it's own.
So why was I annoyed? I figured it out.
Many people who have known me a long time and know some of the horrific things I've been through, have never understood how I've managed to survive it. That's how I get the "strong" label. Well this is how I survive when I'm going through a nightmare. I kind of go into clinical/business mode. I engage my brain maybe 80% and my heart 20%, or less. For me survival mode is all about the basics. Grief is a luxury. All my energy goes to keeping my head above water long enough to even get to a point where I am allowed to grieve. I need to make sure we can survive financially while I'm out of work. I need to make sure I have Plan A, B, C and D in order for whatever may occur. Life insurace? Check. Disability pay? Check. A job when it's all done? Check. House cleaned and provisions obtained? Check. All doctor and scan appointments put in calendar? Check. The list goes on. I'm a survivor. It's in my DNA. Being emotionally healthy is not hard wired into me. I have to go with what I know in times of dire need. Any emotional energy I can muster up goes to Shaun 100%. My relationship is my priority. Keeping our home calm and peaceful, while still being real, is a huge undertaking for me. When I get stressed I tend to lash out. It takes a lot out of me to not give into that.
So until the immediate crisis is over, my grief gets tucked into a little box and pushed under the bed for a later time. Or maybe we could say it gets tucked into a muscle on the right side of my back about midway down and all my neck muscles. Still, it's an improvement over the past.
Right now, I want to savor every pain free moment I have. I want to embrace every feeling of freedom, of feeling good, of being able to feel productive and loved and alive. Wallowing in self pity does nothing for me. All it would do is shit all over everything good I actually DO have. Sadness is looking at the past. Fear is looking at the future. Do I have both? Hell fucking yes. I just choose not to give it the center stage. Right now I just want to savor every good moment I have and try not to take it for granted by focusing on the wrong things.
I absolutely am grateful for friends and family extending to me, but the last thing I want to do is talk more about my cancer. I'd rather just shoot the shit like if it's any other day. I'd rather listen to other people's problems for a while. Sometimes it's nice to have a distraction from my own shit. I mean, we all have our shit to deal with in life. We all sometimes go through serious shit. Traumatic life altering shit. I don't rank it on a pain scale. I'd like to be able to be there for someone else as they are for me and I like it when people give me the chance to. I'm not good at reaching out right now because when I'm in crisis mode I tend to turn inward. It's sort of like a sprint vs a marathon. I am in marathon mode right now so I'm conserving my energy. I don't have the extra energy to reach out to others but when I get lost in myself it's nice to get pulled out of it by a friend.
I want to laugh. I want to smile. Give me conversation that does those. Another cousin tells me of all the crazy shit that goes on in her life and it's great. It's exactly what I need. Cuz loves! I want my life to feel as normal as possible. That's what keeps me stable and is what I need. The earth beneath me is crumbling. The sky above me is dark and ominous. Those are two things I have no control over. All I can do is control myself. (Also praise Cymbalta! I should totally be a spokesperson for them). All I can do is choose how I'm going to react and how I react right now is taking things day by day, moment to moment and cherish every single good thing, no matter how small.
Now for the actual blog post...
Two of my cousins messaged me a few days ago. They are sisters so I assume that wasn't a coincidence. Both totally well meaning but I found myself feeling very annoyed and on the surface, I wasn't sure exactly why. I was being asked a lot of questions not only regarding my surgery and cancer updates, but how I feel about them. I mean the obvious answer here is I was annoyed because people are so fucking lazy and dependent on Facebook for all info. I plainly state in my FB that my updates are in MeWe, but no, they need me to repeatedly update each and every single one of them personally through messenger. No. I have neither the time, energy or desire to do that.
It was more than that though. I was more annoyed by the questions about my emotions surrounding it. I had to think it over a few days before figuring it out. This is one of those "knowing myself" moments. The best thing I've ever done for myself is to figure out who I am and why I process things the way I do. It's a sort of ongoing therapy... a decluttering of it's own.
So why was I annoyed? I figured it out.
Many people who have known me a long time and know some of the horrific things I've been through, have never understood how I've managed to survive it. That's how I get the "strong" label. Well this is how I survive when I'm going through a nightmare. I kind of go into clinical/business mode. I engage my brain maybe 80% and my heart 20%, or less. For me survival mode is all about the basics. Grief is a luxury. All my energy goes to keeping my head above water long enough to even get to a point where I am allowed to grieve. I need to make sure we can survive financially while I'm out of work. I need to make sure I have Plan A, B, C and D in order for whatever may occur. Life insurace? Check. Disability pay? Check. A job when it's all done? Check. House cleaned and provisions obtained? Check. All doctor and scan appointments put in calendar? Check. The list goes on. I'm a survivor. It's in my DNA. Being emotionally healthy is not hard wired into me. I have to go with what I know in times of dire need. Any emotional energy I can muster up goes to Shaun 100%. My relationship is my priority. Keeping our home calm and peaceful, while still being real, is a huge undertaking for me. When I get stressed I tend to lash out. It takes a lot out of me to not give into that.
So until the immediate crisis is over, my grief gets tucked into a little box and pushed under the bed for a later time. Or maybe we could say it gets tucked into a muscle on the right side of my back about midway down and all my neck muscles. Still, it's an improvement over the past.
Right now, I want to savor every pain free moment I have. I want to embrace every feeling of freedom, of feeling good, of being able to feel productive and loved and alive. Wallowing in self pity does nothing for me. All it would do is shit all over everything good I actually DO have. Sadness is looking at the past. Fear is looking at the future. Do I have both? Hell fucking yes. I just choose not to give it the center stage. Right now I just want to savor every good moment I have and try not to take it for granted by focusing on the wrong things.
I absolutely am grateful for friends and family extending to me, but the last thing I want to do is talk more about my cancer. I'd rather just shoot the shit like if it's any other day. I'd rather listen to other people's problems for a while. Sometimes it's nice to have a distraction from my own shit. I mean, we all have our shit to deal with in life. We all sometimes go through serious shit. Traumatic life altering shit. I don't rank it on a pain scale. I'd like to be able to be there for someone else as they are for me and I like it when people give me the chance to. I'm not good at reaching out right now because when I'm in crisis mode I tend to turn inward. It's sort of like a sprint vs a marathon. I am in marathon mode right now so I'm conserving my energy. I don't have the extra energy to reach out to others but when I get lost in myself it's nice to get pulled out of it by a friend.
I want to laugh. I want to smile. Give me conversation that does those. Another cousin tells me of all the crazy shit that goes on in her life and it's great. It's exactly what I need. Cuz loves! I want my life to feel as normal as possible. That's what keeps me stable and is what I need. The earth beneath me is crumbling. The sky above me is dark and ominous. Those are two things I have no control over. All I can do is control myself. (Also praise Cymbalta! I should totally be a spokesperson for them). All I can do is choose how I'm going to react and how I react right now is taking things day by day, moment to moment and cherish every single good thing, no matter how small.
Monday, October 29, 2018
Cancer gives and it takes away
Several months ago I responded to a FB post from a friend of a friend who was wanting to do photo shoots of breast cancer survivors in order to make a book. It was one woman's journey to her own healing through artistic expression. She had asked me for a write up on my journey through my diagnosis and I hadn't heard from her until yesterday. She came to mind from time to time but since I hadn't heard from her in so long I thought the project had been abandoned. Apparently due to people lagging behind on sending her their write ups (that includes me), it's just taking longer than she anticipated. I've decided to use this medium because I didn't want to put something long and thoughtful in messenger. Here seems more appropriate, so here goes...
Being a realist and often a nihilist, I was hesitant to write this but I figure with all the women out there dealing with cancer, some of you may find something worthwhile through my eyes. I'm not the type to paint a rosy picture of breast cancer or the aftermath of it, though I will give a balanced view. My diagnosis was a total shock to me. I have no cancer gene, no cases in my family history, and at the time, I was spending a fortune on "clean eating", everything organic, locally sourced, grain fed, pastured... you get the picture. I used natural supplements to stay healthy and I really did have an amazing immune system... well except for cancer. When I found the lump I was in denial for a few weeks and to make matters worse, it was right before the holidays so getting all the tests done and a plan of action going was a huge headache. The worst part was the waiting. Once I knew what I was dealing with and had a plan, the main challenge was just patience. I was very anti chemo and radiation. I even had it in my living will that I'd rather die than do it.
Lesson #1: You really can't know what you're going to do in a situation until you're in it.
I wanted to do things naturally but there's so much information to sift through and most of it isn't going to be true. Plus insurance will only pay for poison. Yes, that's what it is. Just keeping things real. You hope the poison kills your cancer before it kills you. The side effects are horrid. Please don't waste too much energy on losing your hair. It will be the least of your problems and honestly, being bald comes in handy when the hot flashes hit. Wigs and hats were often too hot to me and the steroids changed me. I was fearless, bold and could not compute sarcasm. Everything was taken literally.
Lesson #2: When faced with a life threatening disease, mundane everyday worries on top of it will crush you so just let those go. Let other people's comfort become their concern.
Since I had no immune system, I didn't get out very often but when I did, I did it bald. Some women cheered me. Some gave me looks of pity. Once I got confrontational with a total stranger for treating our waitress poorly. I literally yawned in his face while he yelled at me. Go steroids!
Lesson #3: You'll learn who your support system really is and it will surprise you who stays and who goes. Let the leavers go. You never had them, really.
Cancer can come with its own gifts, if you choose to see them. You will find out that there are people you really thought you could trust and depend on who will ditch you like a defective toy. You'll have people you never really connected to who will reach out to you and support you in ways you never imagined. It's a very effective, and sometimes painful, way to weed out who deserves to stay in your inner circle and who doesn't. You are worthy of being loved and supported. Know it and repeat it to yourself whenever it's needed. Sometimes marriages break up over it. Sometimes it makes them stronger. I'm incredibly grateful I was part of the latter group.
I personally hate when people use terms like "fight" and "strong" in regards to cancer because it implies that if a person dies from it they were weak. While a healthy "positive" outlook can be beneficial, it won't cure cancer and feeling down and depressed about it won't make it kill you. Every body (not a typo) is different. Every treatment is different. I have a strong personality but cancer treatments made my body weak. I was more sensitive to the treatments than the majority. I chose not to do all my treatments because personally, it's more important to me to have a quality life than a long life. Some side effects are permanent and I had to choose whether or not I was willing to live with them for the rest of my life. Some I wasn't and discontinued that particular treatment. Everything is a crap shoot. You can do all the treatments and still get cancer again. You can do none of them and live a long life. It's all based on a percentage. Yes, your oncologist will be the expert, but you still need to advocate for yourself and decide what is right for you based on the information you have.
Lesson #4: Learn as much as you can about your cancer type and treatments offered and know that some side effects will last the rest of your life. That's important.
Four years later, my short term memory is scary bad. I have more body pain and less physical strength. I tire far more easily and have difficulty adjusting to hot and cold weather. That was with me doing less than half my treatments.
On the positive side, I'm better about setting healthy boundaries and not letting mundane worries get to me too much. I live more in the now and spend less time worrying about the past or future. Once you get cancer, you'll always have that sword hanging over your head, just waiting to fall. It forced me to not take things in life for granted as much. I try to get the most out of whatever time I have left on this earth. I think everyone would benefit from living like that because anything can happen to any of us at any time, right? Consequently, I recently found out my cancer is back. This time I've chosen to have a complete double mastectomy and do radiation. I refused radiation last time because of the side effects, which brings me to the next lesson.
Lesson #5: There's nothing like cancer and the treatments to give you a big life lesson on having perspective.
When the terror of door #1 looks like a picnic compared to the likely outcome behind door #2, I'll suck it up and take the radiation. It won't be helpful to anyone to get too far into this one but it is definitely about having quality over quantity. Death doesn't scare me anymore. A lifetime of pain and suffering is what keeps me up at night.
What it really comes down to for me is that the good times should be cherished, as well as true friends. I do my best to be the best me I can be, live life to the fullest. Cancer comes with a heavy price but it also comes bearing gifts. This mortal coil can be noisy, especially with social media. I've learned to distance myself from the drains of it. I'm not going to change the world, but I can make my tiny corner a better place for me. I can more easily pick the battles that are worthy of my energy. I have more gratitude for things I may have not paid attention to before. I'm going to end this with one more lesson that you should probably not broadcast.
Lesson #6: Use your C-card whenever you damned well please.
I really hate pity. It negates everything positive and every forward step. Nonetheless, people will pity you. They will offer to help. Most won't mean it but if they are going to pity you, make them work for it. When you hear "Let me know if I can do anything to help", give them a job. Bring you food, clean your house, give you a ride somewhere because you are too special to drive. Make sure you keep a straight face. Also, you can get out of uncomfortable situations like unwanted people at your front door. Just be your bald pitiful self and most who have even the tiniest soul will not pressure you into buying whatever they are selling. I even got a really great deal on a new car and did it all through email so all I had to do was go in and sign the paperwork. Hey, it's just making the most out of the situation!
Hopefully that ends it on a humorous note and whoever reads this, I wish the best for you. Honor yourself and however you process what you're going through. Just do the best you can do. That's all you can do and that's enough.
Unapologetically yours,
A strong, bold, loving, fierce, nutty human who happens to have cancer
Being a realist and often a nihilist, I was hesitant to write this but I figure with all the women out there dealing with cancer, some of you may find something worthwhile through my eyes. I'm not the type to paint a rosy picture of breast cancer or the aftermath of it, though I will give a balanced view. My diagnosis was a total shock to me. I have no cancer gene, no cases in my family history, and at the time, I was spending a fortune on "clean eating", everything organic, locally sourced, grain fed, pastured... you get the picture. I used natural supplements to stay healthy and I really did have an amazing immune system... well except for cancer. When I found the lump I was in denial for a few weeks and to make matters worse, it was right before the holidays so getting all the tests done and a plan of action going was a huge headache. The worst part was the waiting. Once I knew what I was dealing with and had a plan, the main challenge was just patience. I was very anti chemo and radiation. I even had it in my living will that I'd rather die than do it.
Lesson #1: You really can't know what you're going to do in a situation until you're in it.
I wanted to do things naturally but there's so much information to sift through and most of it isn't going to be true. Plus insurance will only pay for poison. Yes, that's what it is. Just keeping things real. You hope the poison kills your cancer before it kills you. The side effects are horrid. Please don't waste too much energy on losing your hair. It will be the least of your problems and honestly, being bald comes in handy when the hot flashes hit. Wigs and hats were often too hot to me and the steroids changed me. I was fearless, bold and could not compute sarcasm. Everything was taken literally.
Lesson #2: When faced with a life threatening disease, mundane everyday worries on top of it will crush you so just let those go. Let other people's comfort become their concern.
Since I had no immune system, I didn't get out very often but when I did, I did it bald. Some women cheered me. Some gave me looks of pity. Once I got confrontational with a total stranger for treating our waitress poorly. I literally yawned in his face while he yelled at me. Go steroids!
Lesson #3: You'll learn who your support system really is and it will surprise you who stays and who goes. Let the leavers go. You never had them, really.
Cancer can come with its own gifts, if you choose to see them. You will find out that there are people you really thought you could trust and depend on who will ditch you like a defective toy. You'll have people you never really connected to who will reach out to you and support you in ways you never imagined. It's a very effective, and sometimes painful, way to weed out who deserves to stay in your inner circle and who doesn't. You are worthy of being loved and supported. Know it and repeat it to yourself whenever it's needed. Sometimes marriages break up over it. Sometimes it makes them stronger. I'm incredibly grateful I was part of the latter group.
I personally hate when people use terms like "fight" and "strong" in regards to cancer because it implies that if a person dies from it they were weak. While a healthy "positive" outlook can be beneficial, it won't cure cancer and feeling down and depressed about it won't make it kill you. Every body (not a typo) is different. Every treatment is different. I have a strong personality but cancer treatments made my body weak. I was more sensitive to the treatments than the majority. I chose not to do all my treatments because personally, it's more important to me to have a quality life than a long life. Some side effects are permanent and I had to choose whether or not I was willing to live with them for the rest of my life. Some I wasn't and discontinued that particular treatment. Everything is a crap shoot. You can do all the treatments and still get cancer again. You can do none of them and live a long life. It's all based on a percentage. Yes, your oncologist will be the expert, but you still need to advocate for yourself and decide what is right for you based on the information you have.
Lesson #4: Learn as much as you can about your cancer type and treatments offered and know that some side effects will last the rest of your life. That's important.
Four years later, my short term memory is scary bad. I have more body pain and less physical strength. I tire far more easily and have difficulty adjusting to hot and cold weather. That was with me doing less than half my treatments.
On the positive side, I'm better about setting healthy boundaries and not letting mundane worries get to me too much. I live more in the now and spend less time worrying about the past or future. Once you get cancer, you'll always have that sword hanging over your head, just waiting to fall. It forced me to not take things in life for granted as much. I try to get the most out of whatever time I have left on this earth. I think everyone would benefit from living like that because anything can happen to any of us at any time, right? Consequently, I recently found out my cancer is back. This time I've chosen to have a complete double mastectomy and do radiation. I refused radiation last time because of the side effects, which brings me to the next lesson.
Lesson #5: There's nothing like cancer and the treatments to give you a big life lesson on having perspective.
When the terror of door #1 looks like a picnic compared to the likely outcome behind door #2, I'll suck it up and take the radiation. It won't be helpful to anyone to get too far into this one but it is definitely about having quality over quantity. Death doesn't scare me anymore. A lifetime of pain and suffering is what keeps me up at night.
What it really comes down to for me is that the good times should be cherished, as well as true friends. I do my best to be the best me I can be, live life to the fullest. Cancer comes with a heavy price but it also comes bearing gifts. This mortal coil can be noisy, especially with social media. I've learned to distance myself from the drains of it. I'm not going to change the world, but I can make my tiny corner a better place for me. I can more easily pick the battles that are worthy of my energy. I have more gratitude for things I may have not paid attention to before. I'm going to end this with one more lesson that you should probably not broadcast.
Lesson #6: Use your C-card whenever you damned well please.
I really hate pity. It negates everything positive and every forward step. Nonetheless, people will pity you. They will offer to help. Most won't mean it but if they are going to pity you, make them work for it. When you hear "Let me know if I can do anything to help", give them a job. Bring you food, clean your house, give you a ride somewhere because you are too special to drive. Make sure you keep a straight face. Also, you can get out of uncomfortable situations like unwanted people at your front door. Just be your bald pitiful self and most who have even the tiniest soul will not pressure you into buying whatever they are selling. I even got a really great deal on a new car and did it all through email so all I had to do was go in and sign the paperwork. Hey, it's just making the most out of the situation!
Hopefully that ends it on a humorous note and whoever reads this, I wish the best for you. Honor yourself and however you process what you're going through. Just do the best you can do. That's all you can do and that's enough.
Unapologetically yours,
A strong, bold, loving, fierce, nutty human who happens to have cancer
Wednesday, October 24, 2018
Fungated
I was holding off posting until I had some actual forward movement with treating this cancer but there hasn't been any but it's been annoying enough to blog about. I waited 8 days to find out my insurance rejected the order for the PET scan. I don't totally understand why, though I did call around to ask. The lady who read through all the notes says it doesn't make much sense why. She told me I should appeal the decision. Guess how long that takes? Another week just to get an answer. Besides my impatience to get going on this because of what it is, we are headed into the holiday season which makes getting anything done that normally operates during bank hours damn near impossible. Along with that, all emergency service employees that work in the city of Austin will be on the same insurance, which means not the one I'm on right now. That changes with the new year. I really don't know how that would impact my current treatment but regardless, I want to stick it to United Healthcare while I still have the chance. I fucking hate that insurance company. There's nothing quite like an insurance company to really drive home just how insignificant you really are.
The next step is doing a CT and bone scan. Two days ago, when I was rejected, I was told by the oncology scheduler that an order would be put in that day so I can get it scheduled. I called yesterday and the order was never put in. ARGH! That lady said she'd put it in right away and call me back to schedule. I got no call back. I called the surgeon's nurse and asked if we can go ahead and schedule a mastectomy and radiation because regardless of how the scans turn out, I want that fucking thing out of me. If you are brave and have a strong stomach, do a google image search on "fungated breast tumor". That's what this thing will eventually turn into and while it may take more than a few months to get there, that's enough for me to beg for the surgery NOW. Do all the radiation you want. Make me glow green! There's nothing quite like a little perspective to show that the horrible door #1 you swore you would never enter looked like a picnic once you saw door #2. I'm just going to have her wack it all off. I never understood why some women would rather walk around with one boob than just having none. Maybe I'm weird for wanting symmetry. It's purely cosmetic and a flat chest is way better than a giant open cancer wound... FUNGATED. Just think about what that sounds like. Fungi, fungus. No fucking way. Just NO.
I was so bummed out after I got the reject call, I just felt totally shut down emotionally. It was different than I normally am, which I attribute to my good buddy Cymbalta. Rather than flying off the handle, I just shut down and tried not to cry. I was feeling so down, I just couldn't get into anything I normally enjoy. Shaun was worried I was closing off to him. It wasn't that. I was just trying to deal with a situation I had little to no power over. Freak outs would do nothing to solve it. I guess that's what was different this time. I was able to logic my way out of it... sort of. Later that night Shaun and I had some cuddle time while catching up on some Doctor Who and I kept feeling like I couldn't get enough air. I started feeling panicky so I took a Klonipin and fell asleep for a couple of hours on Shaun's lap. I felt a bit guilty for taking "us time" to sleep but he felt like he was taking care of me so it made him happy. I felt better after the nap.
Hopefully we can get some forward motion on this before the end of this week. I'm really hoping my doc will schedule a surgery. We can worry about the scans in the meantime.
The next step is doing a CT and bone scan. Two days ago, when I was rejected, I was told by the oncology scheduler that an order would be put in that day so I can get it scheduled. I called yesterday and the order was never put in. ARGH! That lady said she'd put it in right away and call me back to schedule. I got no call back. I called the surgeon's nurse and asked if we can go ahead and schedule a mastectomy and radiation because regardless of how the scans turn out, I want that fucking thing out of me. If you are brave and have a strong stomach, do a google image search on "fungated breast tumor". That's what this thing will eventually turn into and while it may take more than a few months to get there, that's enough for me to beg for the surgery NOW. Do all the radiation you want. Make me glow green! There's nothing quite like a little perspective to show that the horrible door #1 you swore you would never enter looked like a picnic once you saw door #2. I'm just going to have her wack it all off. I never understood why some women would rather walk around with one boob than just having none. Maybe I'm weird for wanting symmetry. It's purely cosmetic and a flat chest is way better than a giant open cancer wound... FUNGATED. Just think about what that sounds like. Fungi, fungus. No fucking way. Just NO.
I was so bummed out after I got the reject call, I just felt totally shut down emotionally. It was different than I normally am, which I attribute to my good buddy Cymbalta. Rather than flying off the handle, I just shut down and tried not to cry. I was feeling so down, I just couldn't get into anything I normally enjoy. Shaun was worried I was closing off to him. It wasn't that. I was just trying to deal with a situation I had little to no power over. Freak outs would do nothing to solve it. I guess that's what was different this time. I was able to logic my way out of it... sort of. Later that night Shaun and I had some cuddle time while catching up on some Doctor Who and I kept feeling like I couldn't get enough air. I started feeling panicky so I took a Klonipin and fell asleep for a couple of hours on Shaun's lap. I felt a bit guilty for taking "us time" to sleep but he felt like he was taking care of me so it made him happy. I felt better after the nap.
Hopefully we can get some forward motion on this before the end of this week. I'm really hoping my doc will schedule a surgery. We can worry about the scans in the meantime.
Wednesday, October 17, 2018
Suffering through every door
Yesterday I went to see my oncologist. I haven't really been overly stressed about things until now. I made it clear to her that I want ONLY interventions that will improve quality of life and lessen suffering, not for prolonging life. I told her I was steering towards no treatment but to have monitoring to follow the progression of the disease. She told me that left untreated, the tumor in my breast would grow through to the outside of my body leaving an open gaping wound that would not heal and that could go on for years before it reached the metastasizing stage. She recommended I have the tumor surgically removed and undergo radiation for quality of life. She also added that the surgery may not be possible or it may be complicated since the anatomy of that area is different now because of the previous surgery. Tomorrow I will talk to the surgeon and get more information.
I can officially say now that I'm terrified. I don't have short term disability this time. A surgery will put me out of work at least 6 weeks. I found out my previous surgeon removed almost all my lymph nodes on my right side. That significantly increases my chances of dealing with lymphedema while doing radiation. I cannot tolerate chemo or the estrogen blocking pill. That means I will still only be doing partial treatment and my cancer will not be totally eliminated.
This cancer will kill me. Now I am faced with how it will kill me. Will I suffer with an open gaping wound in my chest that will never heal and wait for it to spread to the rest of my body or will I go through major surgery and radiation and still maybe have another occurrence, along with the high probability of having lymph fill an arm and/or leg making it 4 times the size with no way to control it and chronic bone pain caused by radiation? It's like telling me I can choose to pick between death of a thousand cuts or taking a long bath in a pool of nuclear waste.
So yeah, I feel a bit panicky now and going to have a very intense conversation with my surgeon tomorrow to try to get her on the same page as me before she just blindly goes in with her "usual treatment". I'm not the usual patient and I am not ok with suffering for years and years just to maintain a beating heart. I don't even know at this point if I will be physically able to continue working after this surgery. My body is so broken down after the last treatments that I am barely hanging on and things are only getting worse. I told my doc about all the other stuff going on with me and she wants to do an MRI of my brain and a PET scan of my entire body. It's not scheduled yet because we are waiting on insurance to approve it first. She did take a bunch of blood though so maybe that will say something. My memory is getting so scary that when I walked in the frong doors of the doctor's office I didn't recognize it and stepped back out, confused and wondering where the office was, thinking I stepped into the wrong one.
I'm fucking scared.
I can officially say now that I'm terrified. I don't have short term disability this time. A surgery will put me out of work at least 6 weeks. I found out my previous surgeon removed almost all my lymph nodes on my right side. That significantly increases my chances of dealing with lymphedema while doing radiation. I cannot tolerate chemo or the estrogen blocking pill. That means I will still only be doing partial treatment and my cancer will not be totally eliminated.
This cancer will kill me. Now I am faced with how it will kill me. Will I suffer with an open gaping wound in my chest that will never heal and wait for it to spread to the rest of my body or will I go through major surgery and radiation and still maybe have another occurrence, along with the high probability of having lymph fill an arm and/or leg making it 4 times the size with no way to control it and chronic bone pain caused by radiation? It's like telling me I can choose to pick between death of a thousand cuts or taking a long bath in a pool of nuclear waste.
So yeah, I feel a bit panicky now and going to have a very intense conversation with my surgeon tomorrow to try to get her on the same page as me before she just blindly goes in with her "usual treatment". I'm not the usual patient and I am not ok with suffering for years and years just to maintain a beating heart. I don't even know at this point if I will be physically able to continue working after this surgery. My body is so broken down after the last treatments that I am barely hanging on and things are only getting worse. I told my doc about all the other stuff going on with me and she wants to do an MRI of my brain and a PET scan of my entire body. It's not scheduled yet because we are waiting on insurance to approve it first. She did take a bunch of blood though so maybe that will say something. My memory is getting so scary that when I walked in the frong doors of the doctor's office I didn't recognize it and stepped back out, confused and wondering where the office was, thinking I stepped into the wrong one.
I'm fucking scared.
Sunday, October 14, 2018
No treatment is also a treatment option
Picking up where I left off yesterday, I was talking about what I've been leaning towards as far as what I plan to do with this new news. Simply put, probably nothing. When I first was diagnosed, I remember updating my will and I stated previously that I never wanted any kind of chemo or radiation... That I'd rather die. Well talk about put up or shut up. It's so easy to say what we would do in whatever situation, but until you're in it, you don't really know shit about what you'd actually do. The will to survive is incredibly strong. Some may say it's weak to "give up", be it by suicide or refusing treatment. I say it takes strength to let go of the illusion of control, of the ever important beating heart that takes nothing else into consideration such as quality of life. I actually re-read through my older posts about what exactly I went through when I did agree to do conventional cancer treatments, which is what you'd expect it to be. Pure torture. I can't even say it was temporary. I only agreed to do the treatments that had lower chances of leaving me debilitated permanently and that ended up being one type of chemo and 1 or 2 treatments of the second kind of chemo, no radiation and maybe a few weeks of the estrogen blocking pill I was supposed to be on for the next 10 years. That pill made me suicidal and I knew it was the pill. Logically I was happy in my life but constantly had a tug of war inside my brain about being happy and also wanting to drive my car off a cliff. It was scary and bizarre and totally not worth the risk. The other crazy side effects I dealt with are already listed so no need to do that again. I did want to mention I was amused by the last few sentences of one entry that talked about 2 funny things that happened, which I never wrote about. The entry just stopped right there. That pretty much summed up my brain and even now I'm not a whole lot better off, which I will discuss.
So at the moment I seem to be pragmatic about my approach on whether to go through with another set of torture treatments or just let things go as they will and eventually succumb to the cancer. First off, I want to know more information so I can make a truly informed choice. Only then will I really make a solid decision but I'm leaning heavily towards no treatment, unless another mastectomy (removing the reconstructed breasts) would do me some major good and/or there are experimental treatments to try that are less severe. I'm thinking they will tell me that I will need to do chemo and radiation still and I'm going to tell them no, I will not. The only reasons I would do that is for more time on this planet with Shaun. I love my life with him so much and don't want it to end. At the same time, I don't ever want to be a burden on my family. I realize that no matter what I do, I will end up in pain and will be a burden, at least for a time. Shaun has told me he supports me in whatever decision I make, including one that would mean I may die sooner. He has seen the suffering and ruin caused by multiple rounds of chemo and radiation. Also, I don't want to drain all our financial resources and then die anyway, leaving him destitute and having to start over. He would do that for me, but that's not what I want. Another part of my decision has to do with my age and the way our world is going. I would really suck in a zombie apocalypse. I mean dying by zombie is so gross and horrifying I probably would just go ahead and jump off a cliff. Same goes if we all end up in a situation where we are hiding in our houses with our little stashes of food and water and having to guard it with guns. I mean, no. I can't live like that. I would definitely not be an asset in that kind of situation. I'm in pain all the time, have zero stamina and would just be an anchor. I don't really feel relevant or useful for much anymore. I take care of my patient. That brings me to the next thing. I've been blowing off some things for a few years now that Shaun has been worried about and now I'm starting to worry about it too because it's getting to a point where I could put myself or someone else in harm's way. Ever since chemo, I have a poor memory and I always thought this was from chemo but it's been almost 4 years and my memory problems are getting far worse. I will forget something after only a few seconds and will have to check maybe 3 or 4 times in a row just to make sure I am remembering a small thing, like an appointment time or who I was just talking to. I forget movies and TV shows to the point where I can rewatch them and it's like watching them for the first time, with just a few bits coming back to me. Also, periodically I get intense dizzy spells where I am nauseous, break out in a cold sweat and feel like I'm about to pass out. I get night sweats nearly every day even though I'm almost always cold and I never get hot flashes. I'm also still having a regular period. In the past week I've been having really long, detailed and vivid dreams, some that are very disturbing. In one dream, I killed one of my cats by sawing through his neck skin with my teeth. In my dream mind, I was preventing him from future suffering so it needed to be done. I can still vividly remember his warm blood pumping over my arms and hands as I held him while he died. (Please be assured he is safe and extremely spoiled).
These things seem like they could be a pattern for something so I intend on talking to my oncologist about it and see if she thinks it's something that needs investigation. The memory problems worry me the most since I am a nurse and hold a little life in my hands. I need to make sure I can do my job in a safe manner.
Shaun and I have been discussing if and how it would be possible for me to leave my job and be able to afford a lean but comfortable life. So far, we cannot but we are scaling back and I'm starting to research into the possibility of some type of job that allows me to work from home doing data entry or something... Something that doesn't involve someone else's life and death, if you know what I mean. I don't want to accidentally kill anyone, myself included. Also, if there is a way for me to go on permanent disability, we probably could get enough money from social security to be okay. I'm not there yet but I really don't know what all is going on so I can't say. We are just trying to explore solutions to the different pathways this can go down. Partly it's just to keep ourselves busy while waiting for more information and answers.
So at the moment I seem to be pragmatic about my approach on whether to go through with another set of torture treatments or just let things go as they will and eventually succumb to the cancer. First off, I want to know more information so I can make a truly informed choice. Only then will I really make a solid decision but I'm leaning heavily towards no treatment, unless another mastectomy (removing the reconstructed breasts) would do me some major good and/or there are experimental treatments to try that are less severe. I'm thinking they will tell me that I will need to do chemo and radiation still and I'm going to tell them no, I will not. The only reasons I would do that is for more time on this planet with Shaun. I love my life with him so much and don't want it to end. At the same time, I don't ever want to be a burden on my family. I realize that no matter what I do, I will end up in pain and will be a burden, at least for a time. Shaun has told me he supports me in whatever decision I make, including one that would mean I may die sooner. He has seen the suffering and ruin caused by multiple rounds of chemo and radiation. Also, I don't want to drain all our financial resources and then die anyway, leaving him destitute and having to start over. He would do that for me, but that's not what I want. Another part of my decision has to do with my age and the way our world is going. I would really suck in a zombie apocalypse. I mean dying by zombie is so gross and horrifying I probably would just go ahead and jump off a cliff. Same goes if we all end up in a situation where we are hiding in our houses with our little stashes of food and water and having to guard it with guns. I mean, no. I can't live like that. I would definitely not be an asset in that kind of situation. I'm in pain all the time, have zero stamina and would just be an anchor. I don't really feel relevant or useful for much anymore. I take care of my patient. That brings me to the next thing. I've been blowing off some things for a few years now that Shaun has been worried about and now I'm starting to worry about it too because it's getting to a point where I could put myself or someone else in harm's way. Ever since chemo, I have a poor memory and I always thought this was from chemo but it's been almost 4 years and my memory problems are getting far worse. I will forget something after only a few seconds and will have to check maybe 3 or 4 times in a row just to make sure I am remembering a small thing, like an appointment time or who I was just talking to. I forget movies and TV shows to the point where I can rewatch them and it's like watching them for the first time, with just a few bits coming back to me. Also, periodically I get intense dizzy spells where I am nauseous, break out in a cold sweat and feel like I'm about to pass out. I get night sweats nearly every day even though I'm almost always cold and I never get hot flashes. I'm also still having a regular period. In the past week I've been having really long, detailed and vivid dreams, some that are very disturbing. In one dream, I killed one of my cats by sawing through his neck skin with my teeth. In my dream mind, I was preventing him from future suffering so it needed to be done. I can still vividly remember his warm blood pumping over my arms and hands as I held him while he died. (Please be assured he is safe and extremely spoiled).
These things seem like they could be a pattern for something so I intend on talking to my oncologist about it and see if she thinks it's something that needs investigation. The memory problems worry me the most since I am a nurse and hold a little life in my hands. I need to make sure I can do my job in a safe manner.
Shaun and I have been discussing if and how it would be possible for me to leave my job and be able to afford a lean but comfortable life. So far, we cannot but we are scaling back and I'm starting to research into the possibility of some type of job that allows me to work from home doing data entry or something... Something that doesn't involve someone else's life and death, if you know what I mean. I don't want to accidentally kill anyone, myself included. Also, if there is a way for me to go on permanent disability, we probably could get enough money from social security to be okay. I'm not there yet but I really don't know what all is going on so I can't say. We are just trying to explore solutions to the different pathways this can go down. Partly it's just to keep ourselves busy while waiting for more information and answers.
Saturday, October 13, 2018
The Sword Falls
Wow, it's been a minute. They say pain brings the most inspiration to create. The past 4 years have been the best of my life. I wouldn't trade them for anything in the world except to have 4 more. The jury is out on that one. Recently I found another lump in the same spot as the last one. I just knew instantly, it was cancer again. This time I didn't sit on it. I called to Shaun immediately to feel it. His head dropped just like mine did. We just knew. He had a med appointment with the doc the next morning so I decided to tag along just to have her opinion. I ended up making a real appointment while I was there, piggy-backing on Shaun's. Within an hour I was on my way to get a mammogram and ultrasound. She's good. I didn't want things to stretch into the Christmas season like they did last time. That was a total nightmare. I made them tell me the truth. They said it was most likely cancer. Two days later I was getting another needle biopsy. I have to drive far to get these appointments done back to back. I also had to get a new surgeon since my previous one was no longer with my insurance. This one had a much better bedside manner. Shaun wasn't able to be there this time because it was the same day his cadet class was graduating so I had a good friend go as my stand-in support. He has terminal cancer himself and was more than happy to help. He's such a good man. The world will be a bit darker when he leaves it. There were trees all around this clinic and a pond where people fished. I could see the pond and trees out the windows in the waiting room. I was thinking it was such a great view for such depressing work. I was scared shitless for the biopsy because last time was so traumatic. Last time I had to lay face down on a hard cold table where I was pinned in and a huge needle was shot like a harpoon into my breast. There wasn't enough numbing medicine inside and I felt every bit of it. That's what I was afraid of happening this time but it was much better. This time I laid on my back and if I felt anything I told the doc and she would give me more Lidocaine. They wouldn't let my friend hold my hand but the nurse did. Daquiri was her name. I told her I'd be drinking them in a few days when I went on my cruise. She was nice. I left my appointment and hugged and thanked my friend. Then I left it behind me and we went on our cruise, determined not to let it spoil our vacation. I still had to go to work that night, which was awful but not as bad as I thought it would be, considering I only got maybe 4 hours of sleep. I made it through though, and that night we packed all our bags and got ready to drive to Galveston for our cruise.
We meant for this cruise to be a fun way to get some Tramadol in Mexico but it ended up being a bit more expensive than we anticipated. We decided we wanted to drink... a lot. Helps with compartmentalizing. We spent nearly a thousand dollars on 2 drink packages so we could drink as much as we wanted without worrying. I was drunk, usually, twice per day. We would nap, eat and drink. Nap, eat and drink. We spent a lot of time lounging on the bed and on the balcony and met 3 women who all grew up together. We ended up hanging out with them a lot and we did go with them to get Tramadol. We ended up doing more than we planned hanging with them. They were all 65 but in some ways I felt like Shaun and I were more geriatric with all our health issues. We shopped and then took a taxi to Carlos and Kelly's or whatever restaurant sounds like that. The big tourist chain one but this one was on the beach. Oh I had the BEST ceviche of my life. It was amazing!!! We all ordered and shared food, got yard long fruity drinks and took pictures. A few steps off their deck took us to a white sandy beach with umbrellas for shade and lots of fun floaty things in the water. I stayed in the shade. Shaun got a henna tattoo he now wants as a real one. After a while of having our toes in the sand and water, we took a taxi back to the boat.
I called the doc, as this was the only port I would have cell service. It was on Tuesday and that was the day they told me to expect the results of my biopsy. The doc was busy doing surgery so I talked to the nurse about having her send me an email as soon as she knew because they would not be able to get through once we left the port. A few hours later I got the confirmation. It was only a few sentences long but said the cancer was back. We weren't surprised but admittedly I was pretty disappointed since she said she was on the fence about it being cancer. I had a sliver of hope but we did know. The few people we talked to about it before the cruise were all pushing us to "be positive", as if that would change an outcome. Let me tell you what really sucks. What really hurts is to be positive and get your hopes up and then get to see all those hopes in a shattered pool of blood on the sidewalk. I allowed myself to get real about it in a hurry and it saved me from a whole lot of spiraling. We made a promise to each other that we would keep an open line of communication through this whole thing, no matter what. Last time we tried shielding each other from our own feelings. My shoulders can handle more now and so can Shaun's. While cancer made my body weaker, it made my marriage stronger. We did our "what next" talk.
We ended up spending a lot on pictures too. The private black and white photo shoot was supposed to be free and just for fun but to us it was also possibly the last opportunity we had to capture cherished moments so yeah, we ended up spending an arm and a leg on pictures, but damn they are good. The photographer was good at selling too. She turned them into a slide show and put music to it. Shaun had tears just rolling down his cheeks, which she wasn't prepared for, so I explained. I admit, I was hoping she would feel bad for us and throw us a pity discount but no. I really think she would have if she could have.
So I managed to make it 4 years, almost to the day, between cancer diagnosises... is that a word? Right now, my plan is no treatment and work as long as I can. That explanation and some possible wrenches in that plan will be explained in my next post. My shift is almost up and my focus will be on going home, getting a few snuggles and kisses in with Shaun and going to bed to do it all over again.
We meant for this cruise to be a fun way to get some Tramadol in Mexico but it ended up being a bit more expensive than we anticipated. We decided we wanted to drink... a lot. Helps with compartmentalizing. We spent nearly a thousand dollars on 2 drink packages so we could drink as much as we wanted without worrying. I was drunk, usually, twice per day. We would nap, eat and drink. Nap, eat and drink. We spent a lot of time lounging on the bed and on the balcony and met 3 women who all grew up together. We ended up hanging out with them a lot and we did go with them to get Tramadol. We ended up doing more than we planned hanging with them. They were all 65 but in some ways I felt like Shaun and I were more geriatric with all our health issues. We shopped and then took a taxi to Carlos and Kelly's or whatever restaurant sounds like that. The big tourist chain one but this one was on the beach. Oh I had the BEST ceviche of my life. It was amazing!!! We all ordered and shared food, got yard long fruity drinks and took pictures. A few steps off their deck took us to a white sandy beach with umbrellas for shade and lots of fun floaty things in the water. I stayed in the shade. Shaun got a henna tattoo he now wants as a real one. After a while of having our toes in the sand and water, we took a taxi back to the boat.
I called the doc, as this was the only port I would have cell service. It was on Tuesday and that was the day they told me to expect the results of my biopsy. The doc was busy doing surgery so I talked to the nurse about having her send me an email as soon as she knew because they would not be able to get through once we left the port. A few hours later I got the confirmation. It was only a few sentences long but said the cancer was back. We weren't surprised but admittedly I was pretty disappointed since she said she was on the fence about it being cancer. I had a sliver of hope but we did know. The few people we talked to about it before the cruise were all pushing us to "be positive", as if that would change an outcome. Let me tell you what really sucks. What really hurts is to be positive and get your hopes up and then get to see all those hopes in a shattered pool of blood on the sidewalk. I allowed myself to get real about it in a hurry and it saved me from a whole lot of spiraling. We made a promise to each other that we would keep an open line of communication through this whole thing, no matter what. Last time we tried shielding each other from our own feelings. My shoulders can handle more now and so can Shaun's. While cancer made my body weaker, it made my marriage stronger. We did our "what next" talk.
We ended up spending a lot on pictures too. The private black and white photo shoot was supposed to be free and just for fun but to us it was also possibly the last opportunity we had to capture cherished moments so yeah, we ended up spending an arm and a leg on pictures, but damn they are good. The photographer was good at selling too. She turned them into a slide show and put music to it. Shaun had tears just rolling down his cheeks, which she wasn't prepared for, so I explained. I admit, I was hoping she would feel bad for us and throw us a pity discount but no. I really think she would have if she could have.
So I managed to make it 4 years, almost to the day, between cancer diagnosises... is that a word? Right now, my plan is no treatment and work as long as I can. That explanation and some possible wrenches in that plan will be explained in my next post. My shift is almost up and my focus will be on going home, getting a few snuggles and kisses in with Shaun and going to bed to do it all over again.
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