Weekends are "days off", but I figured I'd blog because again- I spoke too soon.
I said I couldn't sleep. HA.
Today the radiation train hit me like a ton of giant 1 ton bricks- I woke up and just had to go back to bed. Here it is 4pm and I just can't do much besides sit up for a few minutes - then I lose all steam and have to lie down again.
This is like the first rounds of AC- Just soooooooo tired.
And my boss incidentally wanted me to work through this. Is he crazy?
Sorry- this one couldn't work through it- this is just another wringer the body goes through. Serious shit too. The more I think about him being so ready for me to waltz back in after 12 weeks, the angrier I get.
I look 10 years older when i look in the mirror- but I'm trying to justify that with recent lack of sleep. My eyebrows that I happily tweezed once they grew in in their bushy glory aren't growing back, and my hair's slowed down a bit. I'm a half inch away from having Ryan Seacrest's hair stylist.
Today I just couldn't deal with the kids in the house, I was so exhausted I had to ask my mom to take them. I haven't had to do that for a while. Melody is just in a phase where she is a terrible two with screaming and disobeying and I try to keep it together and discipline, but I can't today. I just can't. I give up for 24 hours because it's too much energy and I'm not 100% here. It's the frustrating part of being a mom with cancer. You can't give yourself fully to your kids. It's sad sometimes. But I keep going the best I do.
I am so calmed by the fact that I don't have to go back to work- it was a place I wish i didn't have to go to for a long time- I prayed to win the lotto so I could go back to being that stay at home mom again. Nowadays, money is just paper, and my kids mean more to me than any stupid job that puts their employees in harm's way directly. And I feel calmed that this blog isn't public anymore and I can say what I feel. Not having that stress in my life is going to be so good for me...
If anyone wishes to come over here, I just need an email address to invite you.... xo
b
Happy Saturday-
I neglected yesterday's post for the sheer point of forced relaxation- I felt like I got my ass kicked.
Had a normal radiation session at 9 as usual - I let the techs know about my ER visit and they kind of looked shocked. They told me I did the right thing. My mom drove me so I wouldn't be by myself.
I was just loving the new independence of driving by myself, when this crap happened. Now I am a little worried to go out alone. Currently I don't have a cell phone so I think I should get one now.
I had a nice day in with Melody. It is FREEZING outside, I would love to go for a walk though. I'm just reallllly tired. I can feel the burns starting to set in. It's like internal sunburn feeling right now. It stings a little inside too.
I called Dr. Cairoli at Virtua and left a message with the nurses to call me about the days previous event--- they called back- I didn't hear the phone ring. Phone Tag back and forth frustratingly to where I finally got to speak to a nurse and Dr. Cairoli was out until Monday. But Phyllis was in. So I explained to her the whole story and she was really helpful with talking about it. She didn't like at all the fact that it was so all of a sudden and not a gradual thing, and also suspected it may be a severed nerve ending somewhere. But no one knows. The hospital in Mount Holly was able to get all the films from Toms River and reports and stuff as of yesterday at closing, so Dr. Cairoli and Phyllis will have a nice project to look at Monday.
Until then, I was told to keep Tums on hand in case it happened again- it could be digestive as well.... ???? My esophagus is also in the radiation field as well, says the nurse. She also told me if I thought I was tired now, to wait until I get further into radiation....and that it's not a walk in the park.
But the nurse said to me that I should step back and realize what my body has been through- chemo, then surgery and then radiation - my body keeps trying to heal and then something else happens to it. If my body reacts - it's for a good reason. There's lots of factors here. It's just crazy. Not to mention that I'm stressed out a lot. I'm trying not to be, and meditating and breathing and typing here helps immesnely. Anxiety is a side effect of Tamoxifen too. Anxiety in someone who just learned to not be so anxious. One step forward, two steps back! hah hah!
If I breathe deep, I can feel a little achiness inside my lung. It's definitely my lungs. My lungs do not like me very much- between all the pneumonias, weird ER visits for breathing problems, weeks of bronchitis in my 20s, my lungs have put me through hell. I don't blame them after the fact I put cigarette smoke in them for 21 years. But that is neither here, not there. Good thing I live in the part of Jersey that's overhwelmed by ocean air and not factory air at least.
I can feel it though. It's there in my lung.
We had a nice dinner at mom's house last night and she kept the kids for the night.
Mark and I had a really nice night watching a movie and laughing and
hanging out sans a crying kid. It was a little selfish moment. lol. Originally I had wanted to go up and see a show, but there was no way I was leaving the house feeling like I was. No way. It started again though as ther night went on...... I got a real mild stabbing pain as I was lying in bed and I stayed still, meditated, and wound up falling asleep surprisingly. My body was exhausted.
So it never got back, but I felt the initial feeling again last night.
I'm just tired. Tired of living like this in pain or with side effects these days- it's like- ENOUGH. I would love to complete one simple task without feeling sick or not able to move 100%. I do it anyway, but this crap is getting old. I need to get a pair of sneakers and get the hell out and walking and see if it makes it go away.
The Tamoxifen I need to discuss with Phyllis on Monday. These side effects aren't good. I'm not making peace with them....nights especially. I don't sleep because I am either anxious, awake and sweating my ass off, freezing with teeth chattering, or having a nightmare. This drug also gives you a beard and morning sickness. Yay. And I'm wanting to refuse to take any more drugs- not even to sleep. I'm so sick of pills. If this lung, rib, crazy thing is because of Tamoxifen, I am forced to make a decision to either start a new drug or go off of them all together and live a life of being open to new cancer cells if they decide to visit me. This is the crap I think about constantly. My mind is a constant stream of thought and conversation these days. I have so much to always think about and remember.
I'm not me on these things. Not me at all.
On the upside, my hair is growing back so nicely and I dyed it lavender yesterday too. I like it :)
Melody loves her new comfy pillows and fell asleep in my arms 2 seconds after this picture was taken during dinner at Mom's. (see fox news channel in background-lol). I am now able to hold her gently. I love that.
Radiation #7 is on Monday and it'll be the first time I'll be rocking 5 in a row. eek. Better days are ahead.
Counting days has arrived again- I started the radiation treatments today... Just when I had thought I was done with the routine hospital visits, they come back.
So I have to do these - 5 days a week till I hit 28. About 5 weeks.
The first treatment went ok- It was pretty uneventful in the fact that I didn't really feel much of anything- I just laid on a table very still with lasers all around. Like Glow Bowling. My appointment last week had me lie on my back with my arms over my head (yep- I did it! Thanks to physical therapy) - and they made a mold of my head and back. And gave me three little tattoos- one in the middle of my chest, and 2 on either side under my armpit. Just tiny dots... Nothing fun or cool like a snake driving a knife through a tiger's eye or anything. So they line you up and leave the room- and this big machine moves around you and the laser sits where the cancer used to be. You lie very still and breathe normally, and then they come back in and say "You're done!".
So that was it.
I asked the radiology tech when the burns start and she said about 2 weeks. Oy.
I go back every day except weekends and holidays until 28 are done and then I am done. I am also going to a physical therapist named Bruce 3 times a week. Bruce makes my arm go a little past my comfort zone with different exercises and working the corded bundle of tendons and nerve endings in my armpit apart. Right now it's like a really tight rope of every stringy thing in my arm pulled tightly and sewn up under my armpit. Weird. When it gets real bad, they call it "cording" - which is just what it sounds like. Your nerves and muscles and all that sewed up bundle gets real tight and extending anything is a painful burning ordeal. Thanks to Bruce, we are slowly working it out to be in a more comfortable place. And hopefully stay there. You can see the tendons in my arms twist around my forearm rather than their usual stright up and down liek they used to. It's painful, but you learn to take it every day as it comes. The biggest issue for the arm is the nerve regeneration- Burning inside like hell. Thankfully it hasn't swelled up too bad since surgery. We don't want that. That's a problem called lymphedema and I'm glad it's staying at bay so far. If i had had it- it would be even worse pain, swelling, and I would have to wear a compression sleeve. I don't do compression sleeves unless they come in gold lame.
My stomach is also giving me some major pains and issues with the healing- not a good feeling, but it's scar tissue being moved around and unsettling and healing and pulling and bleh. Just bleh.
I am walking upright and driving now when I can too, which feels great. It feels HUMAN for a change. I still can't hold my kids, but that is something to work on.
I probably also won't be able to go back to work till the end of February as well. Still so much healing left to be done- there would be no way I could do my job right now. This is serious surgery. My boss is being extremely gracious and making sure I'm 100% before coming back. I needed more time
I'm probably looking at one more small upkeep surgery of the girls, and then I should be through with treatments and procedures.... The major ones at least. Patel's PA says I am healing really well in the breasts which is good- that blasted hematoma is still there, making for an uncomfortable firm side. Between the flat skin sitting on top of where the nipple used to be, and the surrounding swelling, it looks like a really weird pin cushion or patchwork kaiser roll.
I won't be seeing Cairoli until March again and Patel in February.
Overall, I feel ok, just still very tired. Getting used to Tamoxifen's side effects, dealing with menopause and chemo residual effects too, just riding the wave of a big exodus that's happening in my system. Next step is to finally sit down with all these bills and insurance forms and receipts and bs and organize it once and for all. I've been avoiding it like the plague, but it must be done. Tax time is here! and Taxes don't care that you had cancer. Thank goodness for good accountants.
life is coming back ...sloooowwwwwly. very slowly.
I can't wait until I can tie dye again, and start working on our house again... and all that good stuff.
Life, I have missed you soooo much!
