They just told me they are moving me up to 5 north because they have too many patients. I am regretting not getting treatment on the 27th like my doctor wanted. I think I have an hour left. I'd rather go sit out in the lobby and finish that puzzle, than go up to 5 north. I wasn't excited to ring the bell (you get to ring it on your last treatment) but now I'm feeling like I want to put my fist through it. I suppose that could be the steroid talking. I will be so glad when I don't have to come up here anymore. I'm a patient person but this place can get a little ridiculous.
Monday, December 30, 2013
last outpatient treatment
They just told me they are moving me up to 5 north because they have too many patients. I am regretting not getting treatment on the 27th like my doctor wanted. I think I have an hour left. I'd rather go sit out in the lobby and finish that puzzle, than go up to 5 north. I wasn't excited to ring the bell (you get to ring it on your last treatment) but now I'm feeling like I want to put my fist through it. I suppose that could be the steroid talking. I will be so glad when I don't have to come up here anymore. I'm a patient person but this place can get a little ridiculous.
Wednesday, December 25, 2013
Merry Christmas
not sure what dad is looking at but this is the 3rd attempt so this is what you get. |
Love the turned over trash can at this complex |
Santa's stuck |
Friday, December 20, 2013
Nutcracker
Tuesday, December 17, 2013
treatment free holiday
Monday, December 16, 2013
Next
We had a great weekend though. We went to see a song and dance Christmas show with dinner that was really cool. We went shopping and out to eat, of course. We went to the Edison/Ford house to see the pretty Christmas lights...it is a little odd sweating while looking at lights. Then we went to Captiva/Sanibel island to drive through the Ding Darling Wildlife Sanctuary. It was great to see so many birds (and 1 crab). We ate at a restaurant on the beach called the Mucky Duck. More pics...
Love mornings on the lanai with a cup of coffee |
Awesome restaurant called Fords. This is the sink in the ladies room. |
Restaurant on the beach...I guess you'd rather see a picture of the beach. |
I'm back
It was a great way to spend some time with my family.
Tuesday, December 10, 2013
I would say more...
But my computer can't seem to connect to the wireless today and this is coming to you from my phone. So here is a picture of what I did Sunday.
Friday, December 6, 2013
Doing alright
Today, I am experiencing some weird pain, not unlike the bone pain I would get from the shot. It's a soreness in a knee, an elbow, an ankle, a few teeth, hips, bicep...totally random places. It's not constant in each place. It's moving around my body like I'm a pinball machine and every time the ball hits a spot it lights up. So I'm uncomfortable. I took a pill to make me more comfortable...still feel the pains but now I also feel a bit loopty-do. I was going to do something outside of the house today but I'm not doing that anymore.
My hair is growing back full force! At the moment it's just long and white enough that it looks like I stuck my finger in a light socket. I wonder if that really happens...if you were to put your finger into a socket would your hair stand up? I think it would have to be a pretty serious amount of voltage which might kill you. Hmm. Anyways, my hair was wet yesterday after showering and I could see long dark hair laying flat against my head. As soon as I dried it, I couldn't tell it was dark anymore and you have to tilt your head just right in the light to really see how long it is.
Tuesday, December 3, 2013
treatment #12
Friday, November 29, 2013
Thanksgiving
Happy Thanksgiving!
Oh, I also put some mascara on last night. That's right...I have a couple of eyelashes growing in.
Wednesday, November 27, 2013
Went to see catching fire today with my friend Sarah. I loved it! They did a good job turning the book into a movie. It didn't have every thing but no movie from a book ever does. The theater was awesome too. The seats (about 70 per screen) reclined...electronically. Big old leather seats. My feet didn't touch the floor and I could not get both arms on the armrests comfortably. I had a delicious salad. It was also the same price as a regular theater too.
Tuesday, November 26, 2013
I had another incident at publix. You know how you tend to keep running into the same people when you go up and down every aisle in a grocery store? Well there was this lady...We politely acknowledged that we were in each other's way and moved on. Two aisles down, I'm about to move on to the next one when this lady is heading right for me with her cart. There is plenty of space for her to be on the other side of the aisle. She gets her cart so close to mine that I am pinned between the shelf, her and the carts. She gets so close to me and asks if I have breast cancer. I must have given her a look because then she asked what type of cancer I had. Why do people assume that it must be breast cancer? I know the answer to that. Anyways, I tell her Ewings sarcoma and give no further explanation to which she gives me a look. I'm slightly annoyed at her initial assumption and realize I'm not being the best person I can be in this situation. So I tell her it's a bone cancer. She tells me she had breast cancer (part of the reason she assumed that's what I had). We compare port sites. She tells me she will pray for me and I thank her for that. We bump into each other at check out and she tells me she is serious about praying for me and she does not take that lightly. I thank her again, sincerely. I'm not about to try and explain my beliefs to her...That would take far too long. I do appreciate anyone taking their own time to say a prayer for my health and well being, no matter what their beliefs. I welcome everyone to put in a good word for me. I am learning cancer survivors are a strange bunch. I wonder what I'm going to be like.
Speaking of video games, I'd like to voice my displeasure with the Nintendo industry. Last year they came out with wiiU as the latest console. That's fine, however, they have stopped making the cool games for regular wii. You can buy a wiiU $300 and play regular wii games on it but what about game cube games (like the game I'm currently playing)? They have 3 new Mario bros games and they are going to come out with a fire emblem game soon. I'm sure a zelda game is on it's way too. lt's a vicious, expensive cycle. If you have kids that haven't started playing video games yet...don't start. Of course, when I go back to work I will have a lot less time to play. That will either annoy me or be just fine. Only time will tell.
Looking forward to Thanksgiving. Brian, Tatiana, Jeremy and I are going to TBBC. They have a really nice turkey day dinner and of course good beer and we don't have to do the dishes or the cooking. Sounds good to me! We might even do some shopping. Jeremy has a 4 day weekend. I feel like we should be going somewhere or doing something special but we have nothing planned other than dinner. Maybe we will hit St Pete or Dunedin this weekend. I guess it all hinders on the results of this appointment I'm waiting on. If my counts are good, I'll get my 12th treatment today. I don't think they will be but we will see. I also get the results of my latest scan. I fully expect it to be clear.
Wednesday, November 20, 2013
:(
So I was all excited because it is beautiful outside. J and I were going to have dinner outside somewhere and it was going to be wonderful! Enter the moth...
On our way to a new restaurant, I notice a moth in the car. J puts the Windows down to suck him to freedom. Once he is out and the Windows are on their way up, I hear glass shatter! At least that's what it sounded like. The passenger side window will no longer roll up. Long story short, I'm sitting in the restaurant (not outside because they don't have a patio) while J is in the parking lot taking the door apart. There goes what could have been a nice evening.
Monday, November 18, 2013
I'm free!
Got out yesterday. Early too. As soon as my mesna was done, they deaccessed me and I was out. 12:30. I hung out with some friends last night...played scattegories for a bit. Feeling good. Looking forward to meandering through a toy store to find some cool things for my nieces and nephews. Maybe hit the gym. My skins are sore to the touch so I think a hot pool is in order. I've got scans on Friday. I'm fully expecting that they will be clean.
3 more treatments to go!
Friday, November 15, 2013
a good day
Thursday, November 14, 2013
WTH Moffitt
this is angry eyebrows face sans eyebrow do you know my level of displeasure. |
birthday popsicles instead. |
doing fine
Getting some extra blood today. That means I can't leave my room for 4 hours. I should have gone out to play yesterday but I decided to stay in bed and watch tv all day and nap. I should be done by the time at opens at 2.
Here's a fun menu item...
Tuesday, November 12, 2013
I'm in
Labs are good and treatment 11 is underway. I got a call at 12:30 saying my bed is ready. I didn't show up until 4 though. It's 9 now and I'm still waiting for the pharmacy to send up premeds and the chemo. I would love an explanation of what goes on down there in pharmacyland. At 5 I had the doctor check when chemo would be ready and that the steroid comes in a bag and not a syringe. He didn't give me a time for chemo but said the steroid was being changed because it wasn't right. 6:30 and still not sure about the chemo. 9 still waiting on chemo and they send up the steroid in a syringe. Really? I want to shadow pharmacy for a day so that I can understand why nothing gets done timely or correctly the first time. I want to be a forgiving patient but when you are dealing with such serious medication, you need to be on your A game 100% of the time. No exceptions!
A new thing this week. Someone from respiratory came by and will be coming by for 24 hours to check my oxygen. This is a first. She asked if I had Oxygen at home, I said no. They had me down as might need it. She said as long as my levels are 90 and up, I won't need it. My oxygen levels have never been below 90. She said that's good, makes my job easier. I'm thinking why are you even here...padding the bill or she got the wrong room. The nurse that does my vitals checks the oxygen every time but now I have a second person coming in between the nurses visits to check the same vital? Makes a lot of sense. One more person to chit chat with.
I enjoyed the hospitals finest vino earlier today...unfermented.
I apologize for any misspelled/misplaced words. I am typing this all out on my phone because the kindle is having issues with the WiFi here. I am not going back through to proofread and fix any auto correct mistakes so have fun with that. Maybe there will be a few funny ones in there. I'm afraid if I don't stop noe, I will mysteriously lose everything I have written so far. So good night.
Monday, November 11, 2013
A very nice weekend
Thursday, November 7, 2013
It's a no go
I've also started playing an old video game, Fire Emblem for GameCube. I can spend far too much time playing this game. Entire days wasted, breaking for only food and potties. If only there was a way to set up my Wii in the hospital...but then I would never get up and walk around.
While I was at the hospital today, I made a crane and a water colour painting. Two gentlemen came in with a little baby and one of the guys kept the little one entertained by making Donald Duck noises. It reminded me so much of my uncle Tim. He used to be the best at that when I was little. I absolutely loved it! It's funny, because he also taught me how to play video games. Specifically, how to strategize, share (graciously give up the controller when my turn was over), recognizing where a useful item might be hidden, etc. I would like to dedicate this blog entry to my uncle Tim. I always looked forward to our visits because you were the coolest uncle. You also had that really cool car.
Incidentally, that babies name was Logan and that made me smile :)
it's an aardvark! |
Tuesday, November 5, 2013
Been awhile
Saturday, Jeremy and I did our usual shopping for the week and breakfast out. We were driving by one of the retention ponds near our place and I saw two animals that appeared to be standing up on their back legs. Without my glasses on I thought they were otters (we have seen 1 since moving into the area). I say "pull over so we can get a closer look at the beavers". I must have said the word beaver 3 times but in my mind I meant and was saying otters. Know wonder he was confused. They turned out to be ducks anyway...chemo brain incident #2. A few other things like that happened this weekend (not as funny, so I don't remember them...surprise, surprise).
Yesterday, I made lasagna in the crock pot. It was not as good as the chick that made us lasagna at the beginning of my treatment (Jeremy's coworkers wife filled our freezer with homemade meals and they were delicious!) but Jeremy said he liked it so I'll take it. Next time I'll probably just do it in the oven (I was home all day yesterday anyway). I feel like crock pots are for when you aren't going to be home but I do have a tendency to leave the kitchen while cooking so I suppose for me a crock pot is a smart idea every time.
This is my pasta eating outfit so I don't get sauce all over my shirt. If it is red sauce, even if I'm being careful, it inevitably ends up on my white shirt. And I always seem to end up wearing white when I'm cooking/eating pasta. My Aunt Mary had this apron made for me a long time ago. The story behind it...I love clam chowder and have since I was little. The family was out to dinner and I ordered the soup and someone asked about me liking fish. I said that I did not (fish was so gross back then, swimming with their poop...I had even seen a goldfish eat it's own poop once, so I would not touch fish). That's when it was pointed out that the clam in my chowder was from the ocean too to which I replied, "Clams! I thought they said ham!" which wasn't actually true. I knew it said clam, but it tasted like ham so I assumed it was ham and that clam was just some unrelated word they called the chowder, like pigs in a blanket...there is neither pigs nor blankets in that dish. In any event, I think I did stop eating clam chowder for a little while. I guess I was derping it way back then too...can't blame that on chemo brain :p
Thursday, October 31, 2013
Halloween
Monday, October 28, 2013
Spam
It's Monday, my bones are uncomfortable and my mouth feels weird. That's all I got!
Sunday, October 27, 2013
The weather is fine
Friday and Saturday were a crap shoot. I felt pretty tired after Thursdays treatment. They actually decreased the dose of all of my drugs in an attempt to get me back on every two weeks. The doc said the point of this treatment plan is frequency and going so long in between treatments isn't part of the plan. He thinks that because I have one kidney, the areas of concern are getting enough exposure and reducing the amount to bring me back on schedule will not lessen the effectiveness of treatment. So I may be done before the end of the year, but still not soon enough to get home for the holidays or back to work this year.
Only 4 more to go!