It's been a good while since I posted last. There was someone a bit too obsessed with me at the time and I'm hoping by now he's gotten a life or a new person to stalk.
The surgery was a success. I mean, I'm here, right? It was a 16 hour surgery. At some point there was a lot of blood loss that set things back. Interestingly, I've read over the surgery notes and there was no mention of it "officially". I didn't quite have to have a blood transfusion but it got close to that. I was in the hospital for 4 days. I did everything I was supposed to so I could have the best recovery. There were weird electrode thingies sewn to where my nipples used to be so they could get a readout of oxygenation. I had a ton of wires and tubes all over. There were also 4 drains put in. The dilaudid was a no go. It made me itch from head to toe. I could hear the silent screams of a thousand addicts when they had to dump it all. I felt so bad for Shaun because he was stuck sleeping on a chair that sort of pulled out into a bed. He mostly slept in a ball but he barely left my side. The day I left they said I had to use the bathroom successfully to leave. I'm pretty sure my screams were heard blocks from the hospital. Next time I will take extra stool softeners before one of those types of procedures... Like 8 or 10. My femmelove was there and she was just holding back her tears. I had flowers and visitors come in but barely remember the first day. I guess there was a mix up in communication when my main surgeon came out after the mastectomy was completed. She worded things in a way that led them to believe I had cancer all throughout my lymph nodes. My mom and femmelove went into full meltdown mode and Shaun shut down. It wasn't until after the plastic surgeon came out and worded things differently that they discovered there were 3 nodes that tested positive, but 15 were removed.
Everything was set up at home so I could stay downstairs for the most part. We had to put up a barricade because the cats kept wanting to jump on my stomach. Lots of pillows were involved. The hardest part was sitting up in bed since my stomach muscles had been cut. I did have percocets but didn't like them either and spent way more time being nauseated than I ever did when I was on chemo. I decided to just stick with Tramadol.
After about the first week or 2, there was a huge storm that rolled in and some guy got stranded in his car behind our house. They had to do a helicopter rescue which was very exciting and I was up and down my stairs to get a different view point. Supposedly this over activity caused me to get a hematoma in my abdomen. We don't know what else could have caused it but it felt like I was pregnant with an alien life. I could feel it pushing my guts out of the way. By the time I went in to see my doctor about it, it had coagulated so he could not aspirate it. I was stuck with it. It slowly dissolved over time and came out of the hole where the drain had been but the swelling in that area remained.
Another crazy side effect I was dealing with the first week after the surgery was panic attacks. I could feel it coming on and my chest would feel tight. I would start feeling very panicky and emotional. We learned to deal with it quickly with a cold wet cloth on my head and a Xanax. Oh sweet blessed Xanax. After a few weeks I could do most things on my own. It was great having my mom around but was glad to see her go after 3 weeks.
I was all ready to be going back to work after that 6 weeks until my doctor told me I could not lift more than 15 pounds for another month or 6 weeks, which basically meant I could not work! I have to say, I'm SO GLAD I opted to pay for short and long term disability when I did. That has saved our bacon big time.
About a month or so ago, I had a long time friend of mine come over to the house. I've known her almost 20 years and she's like a second mother to me. I would have given my life to protect hers if need be. That's how much I loved her. She stole all my percocets! The entire bottle was emptied. She, of course, denies it vehemently but after I vauge posted about it on FB, no less than half a dozen people came forward knowing exactly who I was talking about and saying the same thing happened to them! I watched our whole group tear itself apart over this. People don't want to believe she would do such a thing, including myself. Shaun and I and a few others are now basically social pariahs with the group who refuse to believe it. It makes no difference to me. I have quite a few amazing people in my life so if a few reveal themselves to be turds, there's plenty more that aren't. I do not have a shortage of wonderful people in my life. She's pretty much dead to me now.
The thing I'm dealing with now is adhesive capsulitis. I've had it in my left shoulder since January but now am developing it in my right shoulder. The pain was getting really severe in my left shoulder and after a few docs told me that my pain level is greater than what it should be according to my MRI, I started investigating. As an experiment and a hunch, I stopped taking the Tamoxifen I'm on, which is preventing me from getting cancer again by blocking my estrogen. Within days, my pain levels came down and the crippling depression that hit me was gone. My oncologist insists the drug is not causing these side effects, yet the FB group I'm in begs to differ. Join pain, weight gain and depression are the most widely complained about side effects with it. I'm going through the motions and now on an anti-depressant and tomorrow I meet with pain specialists, to try to get the side effects under control. If that does not work, I will take my chances and stop taking the Tamoxifen. When I say I'm a quality over quantity kind of gal, I really mean it.
In the meantime, I'm looking for work that is in an office environment so I can actually work and not worry about how to care for a patient with a T-Rex arm. I'm in PT now too and I think that is helping me to manage the pain. I'm either in the frozen or thawing stage in that side. I've learned that the cause is largely unknown, there's no quick fix or cure for it and there's no way to prevent it from freezing. It just has to go through the stages and can take up to 3 years to get through all the stages. My PT guy is helping me to manage the pain while I go through the stages.
One other thing I've done in the past couple of months is I fostered 3 baby kittens. My vet sent out a call for someone willing to foster and I was home anyway so I volunteered for the job. A lady named Dawn brought a carrier with 3 tiny 2-week-old kittens. So sweet! One of them wouldn't take a bottle so she taught me how to stick a tube down her throat and squirt the milk in. We weren't sure if she was going to make it. She was in pretty bad shape in the beginning and I didn't get much sleep for a while. It was a lot harder than I thought it would be. Kitten tummies don't deal with that powder formula very well and we had to deal with a lot of constipation. I ended up sleeping next to them for at least the first week and had to set my alarm a lot. My life was a series of naps. I couldn't really go anywhere for long because they would need to be fed every 4 hours. The real skinny one I fed every 2 hours for a few days until she could catch up a little. After 3 weeks of that, I finally got them to eat gruel from a bowl. What a relief! I also got them to start using a litter box. That was a lot of time freed up for me. Several days after they started eating from a bowl I started posting about them needing to be adopted and 2 got adopted right away, both in our neighborhood. I still had the runt for another week. I posted cute pics and videos of her and finally someone came forward wanting to adopt her. We drove to Waco to meet them halfway and they are so in love with her. She turned out to be such an amazing little kitty with a strong and brave spirit. I think she will have a great life. I am FB friends with all the new kitty moms and love to see the pictures they post. I was very heavily emotionally invested in them and really just needed to have one success this year where I felt like I did something worthwhile that gave me a sense of purpose. I definitely feel like I got that out of the experience and so grateful to Dawn for all the coaching she did with me. I'm thinking about having her show me how to do live trapping where they catch the cats, sterilize them and let them go again. I have no idea what my future schedule is going to be like yet but if I have the time I would totally do it.
The biggest thing I've gotten out of this year, besides awesome boobs and a flat stomach, is how much my relationship with Shaun has grown and blossomed. It truly has been a beautiful thing. I'm grateful for so much this year but also ready for it to be behind me so I can get my life back to "normal".
Thursday, August 27, 2015
Monday, May 11, 2015
The home stretch
My waiting period until surgery is at an end. I'm in the home stretch to a journey that feels like forever. It's been a tough road but it helps that I have the most amazing honey in the entire world! Seriously, I feel like besides cancer, my life is perfect. It feels amazing to have someone love me and adore me this much. Everyone should have a connection in their life like this. I feel like I can get through pretty much anything.
In about an hour we will be leaving to pick up my mom from the airport. She's going to be here maybe 3 weeks to help out with my care and Shaun will be off work for a few weeks too. I'm not sure how it's all going to work out with who's going to be where and doing what but it will work itself out. Shaun and I have spent the past 5 days cleaning and organizing like crazy, getting ready for my mom to be here and also for me to again be unable to do much around the house for a while... a month or 6 weeks. Six more weeks and I can go back to work again! I got a text from the family I was working for. They are so amazing and sweet! I just love when I get videos and pics from the kiddo's mom. He's so adorbs!
Today Shaun and I have had a beautiful day. We spent time cuddling and talking. Shaun cried a bit. He's scared to death I'm going to die on the operating table and he's freaked out about having to wait 10 hours to see if I made it through okay. He's been singing sweet songs to me and we even slow danced and just stared into each other's eyes. The amount of love in my heart and in my life is just boundless. It's incredible.
I'm not super worried about surviving but if I don't I know Shaun is set in every way except the emotional side. We have all our paperwork in order as much as a gay couple can possibly have in Texas. I have amazing surgeons though and I have no desire to leave this life at this time so I'm saying it's going to be a success!
Look out world, I'm about to become a new butterfly!
In about an hour we will be leaving to pick up my mom from the airport. She's going to be here maybe 3 weeks to help out with my care and Shaun will be off work for a few weeks too. I'm not sure how it's all going to work out with who's going to be where and doing what but it will work itself out. Shaun and I have spent the past 5 days cleaning and organizing like crazy, getting ready for my mom to be here and also for me to again be unable to do much around the house for a while... a month or 6 weeks. Six more weeks and I can go back to work again! I got a text from the family I was working for. They are so amazing and sweet! I just love when I get videos and pics from the kiddo's mom. He's so adorbs!
Today Shaun and I have had a beautiful day. We spent time cuddling and talking. Shaun cried a bit. He's scared to death I'm going to die on the operating table and he's freaked out about having to wait 10 hours to see if I made it through okay. He's been singing sweet songs to me and we even slow danced and just stared into each other's eyes. The amount of love in my heart and in my life is just boundless. It's incredible.
I'm not super worried about surviving but if I don't I know Shaun is set in every way except the emotional side. We have all our paperwork in order as much as a gay couple can possibly have in Texas. I have amazing surgeons though and I have no desire to leave this life at this time so I'm saying it's going to be a success!
Look out world, I'm about to become a new butterfly!
Friday, April 10, 2015
Surgery date moved up... no more chemo
I've been really struggling with the Taxol chemo treatments. My white blood cell counts have been terrible and it seems to be something rare... or at least uncommon with this type of chemo. On top of that, I've been super sensitive to it in that I've gotten neuropathy with the very first treatment. This chemo is cumulative and the neuropathy can be permanent so that has really freaked me out. I continue to have extreme fatigue, hot flashes every few hours, and sleepless nights. This past Monday I had a Neupogen shot to help with my blood counts but Tuesday, the day of chemo, they were still in the crapper. I had another Neupogen shot and was sent home.
We discussed our options with the doctor. We can't keep coming in every day, expecting to get chemo and be sent home just to come in the next day. The only real option that was given to me was to do it every 2 weeks and extend my chemo 2 more months. No thanks! I'd rather do the A/C chemo than the Taxol and Taxol is supposed to be the easy one! For me it was not. We decided to go to my surgeon and have her do an ultrasound to look at the lymph node that had cancer in it and my tumor to see how far things had progressed. She was unable to even find the lymph node and the tumor didn't look like it was there anymore. She said it may be remnants of a tumor or it may be repairative tissue. Well that's pretty great news!
My doctor was fairly adamant that I should continue my treatments regardless of my side effects. I kind of felt like she was treating me like I was a big wuss. I also told her I had no plans to do the radiation treatments but that I'd wait to make a final decision until after the surgery, when they'd see exactly what was really inside of me still, if anything. I'm pretty adamant that I won't do it though.
Together Shaun and I decided I would stop doing the chemo and go ahead with the surgery. It's scheduled for May 13th. I didn't pick the day but I am so excited it's on the 13th. That's my favorite number! I'm nervous and a little scared that I'm making the wrong decision but mainly I think I'm too exhausted to even celebrate. I did celebrate a little bit with some sushi from my favorite foodie store. I haven't been able to eat anything raw in months. I figure, after the 2 Neulasta shots my immune system is acceptable for sushi. I also picked up a bottle of wine but I have yet to uncork it. I think I forgot it was in the fridge.
When we got home I was so exhausted I was about to fall over. We decided to take a nap. I ended up laying in bed for an hour before I finally got up. No sleep for me... again. Gotta love that chemo coursing through the veins! I think it takes a long time to go away... like several months or even years.
I also got a text on my phone from a previous patient's mom that he was going on hospice. I was actually surprised to hear from her. I don't think I'm on her favorite person list but I'm glad she did anyway. If I am able to attend his funeral I definitely will. He's not even 3 yet. So sad... He was suffering and declining a lot when I was with him though. I wonder if her marriage will survive it.
I think I shall go take a Xanax and see if I can actually sleep tonight. I should start counting how many hot flashes I have in a day.
We discussed our options with the doctor. We can't keep coming in every day, expecting to get chemo and be sent home just to come in the next day. The only real option that was given to me was to do it every 2 weeks and extend my chemo 2 more months. No thanks! I'd rather do the A/C chemo than the Taxol and Taxol is supposed to be the easy one! For me it was not. We decided to go to my surgeon and have her do an ultrasound to look at the lymph node that had cancer in it and my tumor to see how far things had progressed. She was unable to even find the lymph node and the tumor didn't look like it was there anymore. She said it may be remnants of a tumor or it may be repairative tissue. Well that's pretty great news!
My doctor was fairly adamant that I should continue my treatments regardless of my side effects. I kind of felt like she was treating me like I was a big wuss. I also told her I had no plans to do the radiation treatments but that I'd wait to make a final decision until after the surgery, when they'd see exactly what was really inside of me still, if anything. I'm pretty adamant that I won't do it though.
Together Shaun and I decided I would stop doing the chemo and go ahead with the surgery. It's scheduled for May 13th. I didn't pick the day but I am so excited it's on the 13th. That's my favorite number! I'm nervous and a little scared that I'm making the wrong decision but mainly I think I'm too exhausted to even celebrate. I did celebrate a little bit with some sushi from my favorite foodie store. I haven't been able to eat anything raw in months. I figure, after the 2 Neulasta shots my immune system is acceptable for sushi. I also picked up a bottle of wine but I have yet to uncork it. I think I forgot it was in the fridge.
When we got home I was so exhausted I was about to fall over. We decided to take a nap. I ended up laying in bed for an hour before I finally got up. No sleep for me... again. Gotta love that chemo coursing through the veins! I think it takes a long time to go away... like several months or even years.
I also got a text on my phone from a previous patient's mom that he was going on hospice. I was actually surprised to hear from her. I don't think I'm on her favorite person list but I'm glad she did anyway. If I am able to attend his funeral I definitely will. He's not even 3 yet. So sad... He was suffering and declining a lot when I was with him though. I wonder if her marriage will survive it.
I think I shall go take a Xanax and see if I can actually sleep tonight. I should start counting how many hot flashes I have in a day.
Saturday, April 4, 2015
Finally done with the worst of the chemo! Original date Feb 13
So good news... I'm done with the worst chemo on the face of the planet. Thank the Universe!!! I'm now on a chemo called Taxol, which comes with its own set of side effects. The neuropathy is the scariest one because it could be permanent. I heard that if you put your fingers and toes on ice it helps but that lasted all of about 5 minutes. Who wants to feel like they are freezing for 6 hours? Not this girl! Also it made it impossible for me to hide under my blanket because of my positioning. I just opted for hiding and sleeping. The worst part is all the steroids they give during chemo. It made it damn near impossible for me to sleep last night, even with 2 Xanax. At least I don't have to take oral ones for the following 3 days so this will wear off. I hear the other side effects are nails turning black and possibly fall off but they do grow back in. Fatigue and nausea are 2 more. I'm really dreading the nausea part but hopefully the strong ginger tea I have in the fridge will help.
My feet went back to normal. Yay! I also celebrated my last A/C treatment with a most fabulous weekend. Shaun was gifted 2 tickets to see Jane Lynch on Friday, I was gifted with a Painting with a Twist painting and then the following day I went back to do another painting that I REALLY wanted to do. Monday I visited my patient and his family. It was a great weekend and took my mind off of things.
Speaking of "things", I'm to the point that I can barely even say the word "chemo". I have such a strong aversion to the whole process and the place that I am looking into going to therapy for it. The day before another treatment I'm a total ball of anxiety. I can't believe I still have 3 months of it. Ugh!
I have 2 funny stories to share. The first one happened maybe a week and a half ago. Shaun spent a bunch of money getting his truck detailed
My feet went back to normal. Yay! I also celebrated my last A/C treatment with a most fabulous weekend. Shaun was gifted 2 tickets to see Jane Lynch on Friday, I was gifted with a Painting with a Twist painting and then the following day I went back to do another painting that I REALLY wanted to do. Monday I visited my patient and his family. It was a great weekend and took my mind off of things.
Speaking of "things", I'm to the point that I can barely even say the word "chemo". I have such a strong aversion to the whole process and the place that I am looking into going to therapy for it. The day before another treatment I'm a total ball of anxiety. I can't believe I still have 3 months of it. Ugh!
I have 2 funny stories to share. The first one happened maybe a week and a half ago. Shaun spent a bunch of money getting his truck detailed
Brain Fog and Other Unpleasantness
It's getting very difficult to update this blog due to brain fogginess. I often think of things I want to write about but now my mind is virtually blank, except for some clouds. I am going to start by listing all the side effects I have dealt with from head to toe. I have tried writing lists before but then forget some of them so here goes...
Brain fog
Confusion
Short term memory loss
Headaches
Dry eyes
Blurred vision
Dulled or changed taste buds
Teeth pain
Bone pain
Dehydration
Tender nail beds
Nausea
Heart Burn
Diarrhea
Constipation
Weakness
Fatigue
Burned and blistered feet
Trouble sleeping
Fatigue
Compromised Speech
Neuropathy
My friend Ang spent the last week with us due to her having a case of Bells Palsy. We caught it early so hopefully she will make a full recovery. She has become extremely needy from it, which probably wouldn't normally be a problem except it's sort of sucking me dry. It's taking a lot of energy I don't have to try to keep her feeling okay and I don't know how to say, "Hey my friend. You need to take care of yourself now because I'm having a hard time giving you so much of my energy that I really don't have" without sounding shitty. I love her so much but dayum on the neediness. It's just hard because sometimes I just need to pull inside of myself to make it through a day. I don't want to talk to anyone. Other than that, I couldn't ask for a better friend.
While we were out, a few days ago, we witnessed a young woman running. Apparently she was running for her life. We asked her if she needed help and she wanted a ride somewhere. Just then we noticed a man chasing her. I tried to get her to get in the car but he was blocking her way, coming towards the car. I called 911 to get the police involved and the girl ran out of our view. I'm quite sure that she was involved in human trafficking somehow. I can't seem to make my mind peaceful about it. I wish I knew what happened to her. I asked my guides to give her some extra help. I hope we were able to give her extra time to get away and she was able to stay away from him. I wouldn't bet money on it though. That got me all shaky from the adrenaline rush. Now I just feel worried and sad.
My shoulder has also been hurting for 3 months now. I went to a doctor for it and he gave me a cortisone shot. It's worse now than it was before. My arm is so weak now and my shoulder constantly hurts. I can only lay on that side for a few minutes before it's unbearable. Monday I'm going to a physical therapist to see if anything can be done in that way. I also have an appointment with a mental therapist and I have to go in to get a shot for my blood counts.
I am done with the AC chemo, which was the hardest one, or so they say. Supposedly the Taxol that I'm on now is supposed to be a cinch but it's not. My blood counts are still very low with it, even when I skipped a week of chemo. My blood counts were even lower the following week. Now I have to go in every Monday for labs and a shot and Tuesdays for the chemo. I've started to color instead of going to sleep during chemo, just to see how it goes. Last time some old man was talking my ear off and I just wanted him to stop. He was real nice but I guess I just don't enjoy talking to people as much as I used to. *sigh* I feel so stupid in the brain. I mean it's a real struggle just to type this and it seems very clunky and low level.
I guess I'll stop for now and go to bed.
Brain fog
Confusion
Short term memory loss
Headaches
Dry eyes
Blurred vision
Dulled or changed taste buds
Teeth pain
Bone pain
Dehydration
Tender nail beds
Nausea
Heart Burn
Diarrhea
Constipation
Weakness
Fatigue
Burned and blistered feet
Trouble sleeping
Fatigue
Compromised Speech
Neuropathy
My friend Ang spent the last week with us due to her having a case of Bells Palsy. We caught it early so hopefully she will make a full recovery. She has become extremely needy from it, which probably wouldn't normally be a problem except it's sort of sucking me dry. It's taking a lot of energy I don't have to try to keep her feeling okay and I don't know how to say, "Hey my friend. You need to take care of yourself now because I'm having a hard time giving you so much of my energy that I really don't have" without sounding shitty. I love her so much but dayum on the neediness. It's just hard because sometimes I just need to pull inside of myself to make it through a day. I don't want to talk to anyone. Other than that, I couldn't ask for a better friend.
While we were out, a few days ago, we witnessed a young woman running. Apparently she was running for her life. We asked her if she needed help and she wanted a ride somewhere. Just then we noticed a man chasing her. I tried to get her to get in the car but he was blocking her way, coming towards the car. I called 911 to get the police involved and the girl ran out of our view. I'm quite sure that she was involved in human trafficking somehow. I can't seem to make my mind peaceful about it. I wish I knew what happened to her. I asked my guides to give her some extra help. I hope we were able to give her extra time to get away and she was able to stay away from him. I wouldn't bet money on it though. That got me all shaky from the adrenaline rush. Now I just feel worried and sad.
My shoulder has also been hurting for 3 months now. I went to a doctor for it and he gave me a cortisone shot. It's worse now than it was before. My arm is so weak now and my shoulder constantly hurts. I can only lay on that side for a few minutes before it's unbearable. Monday I'm going to a physical therapist to see if anything can be done in that way. I also have an appointment with a mental therapist and I have to go in to get a shot for my blood counts.
I am done with the AC chemo, which was the hardest one, or so they say. Supposedly the Taxol that I'm on now is supposed to be a cinch but it's not. My blood counts are still very low with it, even when I skipped a week of chemo. My blood counts were even lower the following week. Now I have to go in every Monday for labs and a shot and Tuesdays for the chemo. I've started to color instead of going to sleep during chemo, just to see how it goes. Last time some old man was talking my ear off and I just wanted him to stop. He was real nice but I guess I just don't enjoy talking to people as much as I used to. *sigh* I feel so stupid in the brain. I mean it's a real struggle just to type this and it seems very clunky and low level.
I guess I'll stop for now and go to bed.
Thursday, February 19, 2015
Meltdowns and Misery
I need to blog, if anything, for the love of patience. Seriously, if a quarter magically appeared for every person who said, "If there's anything I can do....", I wouldn't even need to worry about taking time off. Really people, Come up with something new PLEASE. Are we really that robotic? Those words are so empty and so vacuous. Just. Stop. Already. My own brain washing prevents me from begging them to stop because their intentions are good, therefore I shall only show gratitude for their empty words that mean nothing.
Actually, I'm apparently the sane one in the relationship today. Earlier there was a problem getting on to the website to pay our power bill so Shaun tried to call them and had a total meltdown after 5 minutes of trying to get a breathing human being on the phone. I sent him out on an errand and took over the task. That problem is solved and was done so in a very calm and sane manner, in spite of the abysmal sad excuse for customer service they have.
One good thing about today is I have the cutest crocheted Cabbage Patch wig that a woman made for me who doesn't know me. I spent half the afternoon braiding the yarn pony tails. It's the only "wig" I'll be wearing during this journey. The emotional attachment people have to hair is a little amusing. Out of all of this, hair being gone is pretty far down on the list of negative side effects to me. It doesn't hurt to be bald... well not usually and very minimally. It's attention getting but so what. I'd way rather be bald than feel like I'm giving anal birth to a baby elephant made of broken glass.
Also, I have a new side effect I've been dealing with for nearly a week. It's called "hand and foot syndrome". It's only affecting my feet but it feels like the skin on the bottoms of my feet are burned. It's actually painful to walk on the cracks of my floor. I don't walk on them much and just trying to baby them so they don't get worse. Apparently they really can get huge blisters and crack open with this. They certainly feel like they are on the verge.
The constant pain and fatigue is making me grumpy and less positive. I just need a break from misery once in a while and I don't know when I'll get it. I'm hoping with this next type of chemo it will back off a little so I can have some life enjoyment once more. I mostly feel like a useless lump of flesh now.
Before I was finished with this, Shaun had another meltdown and called in to work. Good. Let's not have a meltdown at work. Best to do at home. I really don't know what the solution is except just keep swimming.
Actually, I'm apparently the sane one in the relationship today. Earlier there was a problem getting on to the website to pay our power bill so Shaun tried to call them and had a total meltdown after 5 minutes of trying to get a breathing human being on the phone. I sent him out on an errand and took over the task. That problem is solved and was done so in a very calm and sane manner, in spite of the abysmal sad excuse for customer service they have.
One good thing about today is I have the cutest crocheted Cabbage Patch wig that a woman made for me who doesn't know me. I spent half the afternoon braiding the yarn pony tails. It's the only "wig" I'll be wearing during this journey. The emotional attachment people have to hair is a little amusing. Out of all of this, hair being gone is pretty far down on the list of negative side effects to me. It doesn't hurt to be bald... well not usually and very minimally. It's attention getting but so what. I'd way rather be bald than feel like I'm giving anal birth to a baby elephant made of broken glass.
Also, I have a new side effect I've been dealing with for nearly a week. It's called "hand and foot syndrome". It's only affecting my feet but it feels like the skin on the bottoms of my feet are burned. It's actually painful to walk on the cracks of my floor. I don't walk on them much and just trying to baby them so they don't get worse. Apparently they really can get huge blisters and crack open with this. They certainly feel like they are on the verge.
The constant pain and fatigue is making me grumpy and less positive. I just need a break from misery once in a while and I don't know when I'll get it. I'm hoping with this next type of chemo it will back off a little so I can have some life enjoyment once more. I mostly feel like a useless lump of flesh now.
Before I was finished with this, Shaun had another meltdown and called in to work. Good. Let's not have a meltdown at work. Best to do at home. I really don't know what the solution is except just keep swimming.
Thursday, February 12, 2015
3rd chemo in... 13 more to go
I just had my 3rd chemo treatment 2 days ago. It's been.... interesting, to say the least. I haven't had a lot of the side effects but the few I have had have kicked my ass. I mean that sort of literally. My first major side effects were with one of the anti-nausea meds they give before they administer the chemo drugs. I had a few minutes where I could barely breathe, like I was breathing through a tiny hole. That was stressful but didn't last very long. Then at the end of the treatment I had severe abdominal cramping. Well it felt like period cramps but got a lot worse and went down my legs. They had to dope me up with Ativan to make it stop. It sucked and lasted maybe 20 minutes. Shaun was stressed out watching me have a stoned conversation with another stoned patient. Haha! I sort of remember it but I slept a lot.
Now when I go in they start me off with Ativan and slow that other med down and I have no problems at all. I sleep through most of the treatment and I don't get stoned. I curl up with ear buds and music to listen to and all is okay in the world.
The second time I had severe side effects was with constipation. Try to imagine being anally raped with a giant dick made of glass shards. Yeah, that about sums it up. OMG it was HORRIBLE. I did damage. It has taken me weeks of tweaking medicine and sitz baths to not feel like shooting myself in the head every time I need to go to the bathroom. I seem to have it under control again, thank the Universe! I was worried for a little bit that I may end up needing surgery for a fissure. Nature is cruel to put so many nerve endings down there. Bad nature! Bad!
My latest major side effect is also my most disappointing. I had to stop working. During the first week of my second chemo, I went ahead and went to work. It was absolute hell to get to the end of that work schedule. I was incredibly exhausted but I made it. After that I sort of tanked and my blood counts were in the toilet. My energy was also in the toilet. I had to go in to the hospital 3 days in a row to receive extra fluids and also was put on prophylactic antibiotics because I had neutropenic fevers for about 5 days in a row. I had to get extra shots to get my bones to make more blood because my counts were so low and weren't going up. I finally gave in and filed for short term disability. I don't think there will be any problems getting on it. I mean, I simply can't work right now. I have maybe 3 or 4 days every 2 weeks that I can go out in public and feel pretty good. I can't make a living doing that. This way I get 60% of my regular pay and I can actually enjoy my good days and get some things done besides working. I was using all my good days at work and Shaun was having to do everything else.
Shaun is another ball of wax. He is so stressed and on the verge of falling apart through this but is taking every measure possible to hold it together. He's on supplements for adrenal fatigue and mineral deficiency as well as some other stuff. He is on western meds for anxiety, has a really great book for the spouse of a breast cancer patient and has started therapy. It's been a rough road. He's gotten very controlling lately but is trying to take that down a notch. I'm trying to be patient and understanding about it but sometimes it goes over the top and I have to say something.
Financially I think we'll be okay. We have a fundraiser page that isn't doing that great but it's okay. On top of that we have people sending checks in the mail, which is great, and my sister and mom are both doing their own fundraiser. The amount of love and support I have in my life is amazing. It truly is. If I am to be thankful to cancer for anything, that will be it.
Okay signing off for now.
Now when I go in they start me off with Ativan and slow that other med down and I have no problems at all. I sleep through most of the treatment and I don't get stoned. I curl up with ear buds and music to listen to and all is okay in the world.
The second time I had severe side effects was with constipation. Try to imagine being anally raped with a giant dick made of glass shards. Yeah, that about sums it up. OMG it was HORRIBLE. I did damage. It has taken me weeks of tweaking medicine and sitz baths to not feel like shooting myself in the head every time I need to go to the bathroom. I seem to have it under control again, thank the Universe! I was worried for a little bit that I may end up needing surgery for a fissure. Nature is cruel to put so many nerve endings down there. Bad nature! Bad!
My latest major side effect is also my most disappointing. I had to stop working. During the first week of my second chemo, I went ahead and went to work. It was absolute hell to get to the end of that work schedule. I was incredibly exhausted but I made it. After that I sort of tanked and my blood counts were in the toilet. My energy was also in the toilet. I had to go in to the hospital 3 days in a row to receive extra fluids and also was put on prophylactic antibiotics because I had neutropenic fevers for about 5 days in a row. I had to get extra shots to get my bones to make more blood because my counts were so low and weren't going up. I finally gave in and filed for short term disability. I don't think there will be any problems getting on it. I mean, I simply can't work right now. I have maybe 3 or 4 days every 2 weeks that I can go out in public and feel pretty good. I can't make a living doing that. This way I get 60% of my regular pay and I can actually enjoy my good days and get some things done besides working. I was using all my good days at work and Shaun was having to do everything else.
Shaun is another ball of wax. He is so stressed and on the verge of falling apart through this but is taking every measure possible to hold it together. He's on supplements for adrenal fatigue and mineral deficiency as well as some other stuff. He is on western meds for anxiety, has a really great book for the spouse of a breast cancer patient and has started therapy. It's been a rough road. He's gotten very controlling lately but is trying to take that down a notch. I'm trying to be patient and understanding about it but sometimes it goes over the top and I have to say something.
Financially I think we'll be okay. We have a fundraiser page that isn't doing that great but it's okay. On top of that we have people sending checks in the mail, which is great, and my sister and mom are both doing their own fundraiser. The amount of love and support I have in my life is amazing. It truly is. If I am to be thankful to cancer for anything, that will be it.
Okay signing off for now.
Thursday, January 15, 2015
I Have Cancer
Well, Well, Well... I had to read my last post to see where I left off. I did go to a doctor and I did have a mammogram and ultrasound. I was told that it was "probably cancer". I think a small nuclear explosion went off in my head. I mean for real? I spend a small fortune on organic, local, pastured, balanced food, filtered water. I'm one of the healthiest people I know! I'm not super active but that has been about it. I have no cancer in either side of my family except maybe very distant relatives. Yet here I am.
After the initial screenings I was sent to have a biopsy. I had to lay on a table with my boob dangling down a hole. They smooshed it in something and then shot me with lidocaine which hurt like a bitch. Apparently it wasn't enough because suddenly it felt like someone punched me in the inside of my boob and I nearly came off the table with that but couldn't because I could feel a metal rod impaling me. After describing these horrid sensations, the doctor said, well that's because that's exactly what just happened and you are feeling the pressure. I said, "No (bitch), I'm feeling the GD PAIN of it". I wasn't mean about it. Just very urgent. She shot me with more lidocaine and I laid on that thing shaking, just waiting for the next set of tortures. Scared me to death! BTW, I took a pic of the "needle". It looked like a full sized phillips screwdriver. Not even exaggerating.
Within 24 hours I had my diagnosis. Invasive Ductal Carcinoma. I knew nothing else for another week or 2 and I was pissed off at the holidays because once again, I had to put important stuff on hold so someone else's religion could take over the whole GD country and shut everything down. I swear, if anyone ever starts going off about the War On Christmas to my face I'm going to slap them so hard and tell them to STFU. Whiny pretentious asses.
Once the stupid holidays were over, things got rolling very quickly. I have to say that there is a great relief in just knowing what you're dealing with and having an actual game plan and schedule. The first thing I did after the holidays was meet with a recommended plastic surgeon. Oh man, I LOVE that dude! He had a great personality, tons of experience and his work is nothing short of genius. I get to have a tummy tuck AND a boob job. Hello! They literally cut your whole stomach off and make boobs out of it. Suh-WEET! Recovery time will be awful but so what! I have always hated my stomach ever since it turned into a bag of fat hanging over a c-section scar. After talking with him, I met with our "liason" who is in charge of scheduling and preparing. She told me that our insurance was "out of network" and probably would not pay for them to do the procedure. My heart sunk immediately. Then she got kind of teary-eyed and said "...BUT, the doctors here are amazing and don't believe you should have to worry about fighting cancer and dealing with money issues so if insurance doesn't pay, they will still do the procedure and charge you nothing."
!!! Whaaaaat?
Yes, that is right. There are angels dressed in white coats. I'm still resistant to believe it until it happens but I'm hoping they really mean it. I've decided to have both breasts done for symmetry and I will have lotus flowers tattooed over my boobs, instead of having nipples tattooed because, that's just boring to have nipples again! Okay, so back to the present.
I got my port put in and Tuesday (3 days ago) I got chemo for the first time. I am taking off my first weekend of work just to see how I do and figure out which 3 day stretch will be best for me in scheduling my chemo around work. So far the side effects have been minimal but that's pretty typical for the first few days due to the powerful anti-nausea drugs and steroids they administer before the chemo.
Oh I almost forgot to mention that I named my tumor Olive. It's about the size of an olive... feels like the shape although it's a very irregular shape in the ultrasounds and stuff. My cancer is stage 2B because I have 1 or 2 lymph nodes involved. The plan is 16 rounds of chemo, surgery and then 30 or 35 rounds of radiation, followed by 10 years of hormone therapy that blocks my estrogen production since that's what is feeding my cancer. It's basically chemically induced menopause. This whole thing is supposed to last about a year. I should lose my hair in a week or so.
Until next time...
After the initial screenings I was sent to have a biopsy. I had to lay on a table with my boob dangling down a hole. They smooshed it in something and then shot me with lidocaine which hurt like a bitch. Apparently it wasn't enough because suddenly it felt like someone punched me in the inside of my boob and I nearly came off the table with that but couldn't because I could feel a metal rod impaling me. After describing these horrid sensations, the doctor said, well that's because that's exactly what just happened and you are feeling the pressure. I said, "No (bitch), I'm feeling the GD PAIN of it". I wasn't mean about it. Just very urgent. She shot me with more lidocaine and I laid on that thing shaking, just waiting for the next set of tortures. Scared me to death! BTW, I took a pic of the "needle". It looked like a full sized phillips screwdriver. Not even exaggerating.
Within 24 hours I had my diagnosis. Invasive Ductal Carcinoma. I knew nothing else for another week or 2 and I was pissed off at the holidays because once again, I had to put important stuff on hold so someone else's religion could take over the whole GD country and shut everything down. I swear, if anyone ever starts going off about the War On Christmas to my face I'm going to slap them so hard and tell them to STFU. Whiny pretentious asses.
Once the stupid holidays were over, things got rolling very quickly. I have to say that there is a great relief in just knowing what you're dealing with and having an actual game plan and schedule. The first thing I did after the holidays was meet with a recommended plastic surgeon. Oh man, I LOVE that dude! He had a great personality, tons of experience and his work is nothing short of genius. I get to have a tummy tuck AND a boob job. Hello! They literally cut your whole stomach off and make boobs out of it. Suh-WEET! Recovery time will be awful but so what! I have always hated my stomach ever since it turned into a bag of fat hanging over a c-section scar. After talking with him, I met with our "liason" who is in charge of scheduling and preparing. She told me that our insurance was "out of network" and probably would not pay for them to do the procedure. My heart sunk immediately. Then she got kind of teary-eyed and said "...BUT, the doctors here are amazing and don't believe you should have to worry about fighting cancer and dealing with money issues so if insurance doesn't pay, they will still do the procedure and charge you nothing."
!!! Whaaaaat?
Yes, that is right. There are angels dressed in white coats. I'm still resistant to believe it until it happens but I'm hoping they really mean it. I've decided to have both breasts done for symmetry and I will have lotus flowers tattooed over my boobs, instead of having nipples tattooed because, that's just boring to have nipples again! Okay, so back to the present.
I got my port put in and Tuesday (3 days ago) I got chemo for the first time. I am taking off my first weekend of work just to see how I do and figure out which 3 day stretch will be best for me in scheduling my chemo around work. So far the side effects have been minimal but that's pretty typical for the first few days due to the powerful anti-nausea drugs and steroids they administer before the chemo.
Oh I almost forgot to mention that I named my tumor Olive. It's about the size of an olive... feels like the shape although it's a very irregular shape in the ultrasounds and stuff. My cancer is stage 2B because I have 1 or 2 lymph nodes involved. The plan is 16 rounds of chemo, surgery and then 30 or 35 rounds of radiation, followed by 10 years of hormone therapy that blocks my estrogen production since that's what is feeding my cancer. It's basically chemically induced menopause. This whole thing is supposed to last about a year. I should lose my hair in a week or so.
Until next time...
Subscribe to:
Posts (Atom)