Merry Christmas everyone!!
I thought it'd be a nice time to update a little. So the 22nd and 23rd I didn't feel well at all. In fact, all day the 23rd I slept. I couldn't keep my eyes open for longer than 10 minutes. Luckily I was feeling a lot better Christmas eve and day. A little tired but not too bad. :)
Christmas eve at about 2 oclock I went to my parents house and my aunts and uncles and cousins started coming over. Lots of food (not a formal dinner or anything, but lots of good munchiness.) My cousin, her husband, my uncle and I played a new card game. Anyone ever heard of "Up the river, down the river"? I guess it's a little like pinochle. At like 530 or so we opened presents. Got new gloves, a vanilla oil scented thingie and $50! It was good to see all the family. There was at one time 22 people in that tiny house. I still don't know how we all fit.
Christmas Day, I woke up at 4am. I don't know why, it was annoying and I couldn't get back to sleep. Well, at 11, my sister and I went back to my parents house. Two of my cousins came over at 11 too. My parents are raising their younger brother, so in a way my parents are their secondary parents. (Unfortunately both of their parents have passed away in the last two years.) So, it was a MUCH smaller crowd Christmas morning. My oldest brother was spending the morning down at his girlfriends, so we ended up Skype-ing him at one point. It was kinda fun! There was a TON of food today too, but that's because it was the left overs from the night before. haha I think my parents still have a giant bowl of pasta salad and half a pyrex dish of taco dip.
Well, then we opened presents. The way my family does it is one to two presents are opened at a time and everyone watches and we oogle and ogle a bit over what they got before the next ones are handed out. Part of the joy of Christmas for me is being able to see what others get. I haven't purchased Christmas presents in several years, unfortunately, but I still love to see what others get. My grandma got a nice footstool from my brother. I received 19 pairs of very colorful socks. hahaha some are fuzzy, some are ankle socks, but they are all very easy to mix and match. My brother got me a pillow. But not just an ordinary pillow, one that you can plug an mp3 player into and have music come through the pillow to lull you to sleep. (Now I just need an mp3 player...) I also received two scarves, a hat, some feminine clothing.... a new sweater AND a Dick's t-shirt. (For those that aren't from Seattle, Dick's is a burger joint here, very iconic, good, and you have to have a tshirt! All the cool kids do anyway.) I got a weird dog back scrub loofa thing. It's hard to describe. I think that's it... Anyhow, pretty cool.
After all that excitement, my sister and I just hung around the folks place all day. We spent most of our time on my parents bed. I know that sounds weird, but it's the most comfortable place in the house. We watched a cheesy hallmark christmas movie and a holiday tv special thing, also some basketball and football was watched of course. :) Plus the whole time I was in there, I got to cuddle with one of my cats.
Oh my grandma got my mom a brand new printer for her computer. She was so excited about that because hers has been stupid for far too long. I already have a project in mind once it's set up.
So, it was a very good Christmas and I loved being able to spend lots of time with so much of my family. I hope you all had a great holiday season as well. :) Next up, my birthday!!! Ok, that's still a few weeks away, but still.....
Sunday, December 26, 2010
Wednesday, December 15, 2010
The next game plan
Alright, well, I have lots to update on, so here I go.
Tuesday I had CT scans done and Wednesday I found out the outcome and whats next on my plate. We were hoping the tumor had shrunk enough with my treatment so that Dr. Lin would be ok with doing surgery in a few weeks. It turns out this is not the case. I have to do 8 more weeks of treatment before getting more scans. This means 4 IVs of the Bevacizumab and the tri-weekly shots of Interferon for the next 8 weeks. Now, the good news I guess is that there is no visible spread of the cancer and the tumors have indeed shrunk. Not by much though. In order to be good for the surgery, the Dr.s were hoping it to be down 30-50%. It's only shrunk about 10%. Since I have the paperwork next to me, let me read you the dimensions.
Kidney: 10.2 x 8.5 x 9.7 cm
Previously: 11.1 x 8.5 x 10.6 cm
Lymphnodes: 10.0 x 11.3 x 15.2 cm
Previously: 10.3 x 12.1 x 17.2 cm
So, they're still big. Dr. Tykodi said that it could be possible the tumors don't really go down much more, but we're just not sure at this point. If we get down to 25%, there's a good chance we could do surgery then.
Well, after hearing this news, my dad and I went to fill my Interferon prescription so that I could do it at home. That'll be different. We then went to infusion so I could start my next round of Bevacizumab. They heated up my arms for quite some time and then started with the needles. My nurse tried, and it hurt, but it didn't work. Then our expert came in and she tried but it didn't work. She then tried another spot and got the IV in. I tell ya, it all still hurts.
I was watching Ellen as they did that and then I had to wait for the drug to arrive. They wait until the needle is in before ordering it from the pharmacy. We waited and waited. My dad went downstairs outside to have a smoke and I just watched Oprah. At 4:10, the entire buildings power went out. Well, so much for watching the tv. Nurses were going everywhere to check on everyone, people were searching for flashlights, it was crazy. A few back up generator lights came on but it was still pretty dark. We found out the nurse call buttons aren't on with the generator system.
My dad came back and told me what had happened. He was standing out on the street when he heard a loud boom. To his left, a giant manhole cover came shooting several feet into the air. Then, there was another loud boom and another manhole cover went flying. Smoke started pouring out of it. Then all the lights went out. Seattle City Lights said about 450 customers went dark. This also meant all street lights in that grid were out. Mind you, it's now rush hour and one of the busiest intersections in Seattle no longer has street lights. Police had to rush to the scene to direct traffic.
My nurse brought my drug in, thankfully already mixed and ready to go. The pharmacy had no power at all. At least in infusion we had some back up power. My dad was afraid of the traffic getting onto the freeway, but when we left getting on wasn't that big a deal.
So, there you have it. I kinda feel like I'm back to the drawing board, but at least I'm moving forward with this all. Now we just wait again until February 8th for my next scans. Thank you all for your continued support.
-Mallory
Tuesday I had CT scans done and Wednesday I found out the outcome and whats next on my plate. We were hoping the tumor had shrunk enough with my treatment so that Dr. Lin would be ok with doing surgery in a few weeks. It turns out this is not the case. I have to do 8 more weeks of treatment before getting more scans. This means 4 IVs of the Bevacizumab and the tri-weekly shots of Interferon for the next 8 weeks. Now, the good news I guess is that there is no visible spread of the cancer and the tumors have indeed shrunk. Not by much though. In order to be good for the surgery, the Dr.s were hoping it to be down 30-50%. It's only shrunk about 10%. Since I have the paperwork next to me, let me read you the dimensions.
Kidney: 10.2 x 8.5 x 9.7 cm
Previously: 11.1 x 8.5 x 10.6 cm
Lymphnodes: 10.0 x 11.3 x 15.2 cm
Previously: 10.3 x 12.1 x 17.2 cm
So, they're still big. Dr. Tykodi said that it could be possible the tumors don't really go down much more, but we're just not sure at this point. If we get down to 25%, there's a good chance we could do surgery then.
Well, after hearing this news, my dad and I went to fill my Interferon prescription so that I could do it at home. That'll be different. We then went to infusion so I could start my next round of Bevacizumab. They heated up my arms for quite some time and then started with the needles. My nurse tried, and it hurt, but it didn't work. Then our expert came in and she tried but it didn't work. She then tried another spot and got the IV in. I tell ya, it all still hurts.
I was watching Ellen as they did that and then I had to wait for the drug to arrive. They wait until the needle is in before ordering it from the pharmacy. We waited and waited. My dad went downstairs outside to have a smoke and I just watched Oprah. At 4:10, the entire buildings power went out. Well, so much for watching the tv. Nurses were going everywhere to check on everyone, people were searching for flashlights, it was crazy. A few back up generator lights came on but it was still pretty dark. We found out the nurse call buttons aren't on with the generator system.
My dad came back and told me what had happened. He was standing out on the street when he heard a loud boom. To his left, a giant manhole cover came shooting several feet into the air. Then, there was another loud boom and another manhole cover went flying. Smoke started pouring out of it. Then all the lights went out. Seattle City Lights said about 450 customers went dark. This also meant all street lights in that grid were out. Mind you, it's now rush hour and one of the busiest intersections in Seattle no longer has street lights. Police had to rush to the scene to direct traffic.
My nurse brought my drug in, thankfully already mixed and ready to go. The pharmacy had no power at all. At least in infusion we had some back up power. My dad was afraid of the traffic getting onto the freeway, but when we left getting on wasn't that big a deal.
So, there you have it. I kinda feel like I'm back to the drawing board, but at least I'm moving forward with this all. Now we just wait again until February 8th for my next scans. Thank you all for your continued support.
-Mallory
Sunday, December 12, 2010
Quick Update
Just thought I'd give a brief update. I've been feeling really good lately. I kept on waiting for the drugs side affects to kick in but aside from extreme fatigue, and some colds, I didn't notice a thing. I had my last shot of Interferon on Friday. This Tuesday I go in for CT scans and a few other tests. On Wednesday is when I will see Dr. Tykodi and he will let me know if the tumors have shrunk and whether they think I'm good to go to surgery. I really really really hope that this is the case. I'm hoping that the beginning of January is when I'll have my surgery and that I can start the process of moving forward after having cancer. There are still so many unknowns, I am just super anxious. So, I'll let you know Wednesday what I find out.
Monday, November 15, 2010
Halfway There
Hello bloggers! I've finally given in so that I will write a new blog post. It has been a little while, hu?
Let's see, the last time you heard from me, I was just starting my treatments. I have now had two doses of the Avastin and am about to go in today for my 7th shot of Interferon. Last Monday they upped the Interferon from 300 millions to 600. Today I believe it will be going up to 900. Unless the doctor really feels like it's necessary, I will not be going up to the highest dosage, which is 1200. I've been doing pretty well on the drugs so far, so perhaps I might go up to 1200. I haven't noticed differences with the drugs really except that I am more tired and the last few days I've been extremely nauseated. I have pills for the nausea, but I feel they don't do much unless I take two at a time, and even then. Another thing is I've really lost my appetite. I mean, I haven't had much of one for a while, but it's practically not even there anymore. How can you have an appetite when the thought of food makes you more nauseated than you already are? Ugh, not fun.
I've definitely been able to know the infusion people well over the last few weeks. I know the system, I know the rooms, and I know quite a few people. My mom was even able to take me the other day and so I showed her around the SCCA. I was having issues with a certain nurse (i believe I mentioned her before) and how she bugged me and wasn't nice with the needles but my dad mentioned it the other day and we were able to get a new nurse. Wednesday I go in again for my next IV so we'll see how the new nurse does with finding my veins... No matter what I do, it's still near impossible to find them and I end up like a pincushion.
So, just two more IVs, and a few more weeks of shots and then I'll go back in for CT scans. That'll happen the 14th of December and I'll know about if/when my surgery is on the 15th. If it looks good enough to operate, expect that right after new years. Hopefully it will be a calm Christmas. Hmmmm hopefully I'll have an appetite for Thanksgiving.....
Thanks for all your thoughts and prayers, it is EXTREMELY difficult sitting in this house day after day and having no social life. Sometimes it's hard to get out of bed because I have to open my eyes and see the same four walls again. But, only a little longer and then this shall pass. Thanks!
-Malfoy (my nickname, penned today in honor of HP: Deathly Hallows Part 1 coming out this week!)
Let's see, the last time you heard from me, I was just starting my treatments. I have now had two doses of the Avastin and am about to go in today for my 7th shot of Interferon. Last Monday they upped the Interferon from 300 millions to 600. Today I believe it will be going up to 900. Unless the doctor really feels like it's necessary, I will not be going up to the highest dosage, which is 1200. I've been doing pretty well on the drugs so far, so perhaps I might go up to 1200. I haven't noticed differences with the drugs really except that I am more tired and the last few days I've been extremely nauseated. I have pills for the nausea, but I feel they don't do much unless I take two at a time, and even then. Another thing is I've really lost my appetite. I mean, I haven't had much of one for a while, but it's practically not even there anymore. How can you have an appetite when the thought of food makes you more nauseated than you already are? Ugh, not fun.
I've definitely been able to know the infusion people well over the last few weeks. I know the system, I know the rooms, and I know quite a few people. My mom was even able to take me the other day and so I showed her around the SCCA. I was having issues with a certain nurse (i believe I mentioned her before) and how she bugged me and wasn't nice with the needles but my dad mentioned it the other day and we were able to get a new nurse. Wednesday I go in again for my next IV so we'll see how the new nurse does with finding my veins... No matter what I do, it's still near impossible to find them and I end up like a pincushion.
So, just two more IVs, and a few more weeks of shots and then I'll go back in for CT scans. That'll happen the 14th of December and I'll know about if/when my surgery is on the 15th. If it looks good enough to operate, expect that right after new years. Hopefully it will be a calm Christmas. Hmmmm hopefully I'll have an appetite for Thanksgiving.....
Thanks for all your thoughts and prayers, it is EXTREMELY difficult sitting in this house day after day and having no social life. Sometimes it's hard to get out of bed because I have to open my eyes and see the same four walls again. But, only a little longer and then this shall pass. Thanks!
-Malfoy (my nickname, penned today in honor of HP: Deathly Hallows Part 1 coming out this week!)
Wednesday, October 27, 2010
Say what?
I am online a lot. Mostly because there is nothing else for me to do. These last two days especially have been pretty poor days as far as energy and health goes. I haven't really left bed at all today (and of course by bed, I mean couch.) So, there was something I felt like sharing and that's why I'm writing another blog entry.
Recently at a social gathering I found out that my span of readers is a LOT bigger than I had previously thought. A friend of my sisters mothers friend sent my blog to my entire first elementary school. Wha?! Who knows who actually reads this. My kindergarten teacher, Mr. Calico? My third grade teacher Mr. Hoppe-Leonard? Kinda made me nervous about what I post. :)
Well, this helps bring up a certain point I've been feeling lately. Sitting at home all day with facebook and clips from Ellen Degeneres website leave a lot to be desired in my life. Many people ask me what they can do for me all the time. I hardly can think of any answers. How do you ask for charity? (Except in the form of health care where I might need charity care) :) Here is something I ask all of you my readers: PLEASE leave comments on the blogs you read. I receive a few from some great friends and acquaintances here and there, but I know the majority of you are holding out on me. I cannot begin to tell you how much your words will help me get through the mundane and perpetually never ending days that I have on this couch. Even if you don't have a blogger or Gmail account, you can still post. I just need to hear it I guess.
One of my "Love Languages" (Dr. Gary Chapman, great stuff) is Quality Time. Well, I spend my time by myself and it's really starting to suck. Even though most of you live far away, just dropping a line or two will really help. Thanks a bunch!
-Mallory
PS. Since my DSHS hasn't gone through yet, I have to go to the SCCA to get my tri-weekly shots, starting Monday. Well, at least we can do that much. :)
PPS. I really need to revamp the design of my blog but have no clue. If anyone wants to help, I'd appreciate it. :)
Recently at a social gathering I found out that my span of readers is a LOT bigger than I had previously thought. A friend of my sisters mothers friend sent my blog to my entire first elementary school. Wha?! Who knows who actually reads this. My kindergarten teacher, Mr. Calico? My third grade teacher Mr. Hoppe-Leonard? Kinda made me nervous about what I post. :)
Well, this helps bring up a certain point I've been feeling lately. Sitting at home all day with facebook and clips from Ellen Degeneres website leave a lot to be desired in my life. Many people ask me what they can do for me all the time. I hardly can think of any answers. How do you ask for charity? (Except in the form of health care where I might need charity care) :) Here is something I ask all of you my readers: PLEASE leave comments on the blogs you read. I receive a few from some great friends and acquaintances here and there, but I know the majority of you are holding out on me. I cannot begin to tell you how much your words will help me get through the mundane and perpetually never ending days that I have on this couch. Even if you don't have a blogger or Gmail account, you can still post. I just need to hear it I guess.
One of my "Love Languages" (Dr. Gary Chapman, great stuff) is Quality Time. Well, I spend my time by myself and it's really starting to suck. Even though most of you live far away, just dropping a line or two will really help. Thanks a bunch!
-Mallory
PS. Since my DSHS hasn't gone through yet, I have to go to the SCCA to get my tri-weekly shots, starting Monday. Well, at least we can do that much. :)
PPS. I really need to revamp the design of my blog but have no clue. If anyone wants to help, I'd appreciate it. :)
Saturday, October 23, 2010
Absent
Hi everyone! So I haven't posted in several days because my computer has been really weird. It would freeze and not let me open any programs. It was quite annoying. Well, today it apparently decided to not have PMS. Warning: Long blog! Whoa!
My trip to the SCCA on Wednesday was actually longer than my trip last Friday, thankfully it didn't feel as long. We showed up and I had to do a blood draw. A little girl was back there getting a shot or something but she was screaming bloody murder. Made me sad to think a little girl was there. It took a little while but they found a vein and managed to take some blood. Then we went upstairs and waited for a bit to see Dr. Tykodi. A lady with a little cart walked around offering people juice, water and crackers. All free. Cool! We went back and the nurse weighed me and I was actually pleased to see I have not lost any weight. I think I've finally hit a plateau. I have lost far too much weight in a short enough period, so I'm ok where I'm at. My blood pressure was fine too. Well, i had to lay down on the table because I was so exhausted. It took at least a half hour before he came in to see us. He told me that my MRI and Bone Scan were fine. Nothing stood out to them that we should be worried about. Phew!!
Basically he went over what he has before about my meds. My dad had really been confused before.
My medical treatment is as thus: Starting this last Wednesday (10-20-10) I would receive through IV Bevacizumab (Avastin) every other wednesday at the SCCA. Starting next Monday* (10-25-10) I would start through an under the skin shot Interferon. I would first start with 300 million, then up to 600 million and then the highest i'd probably go is 900 million. The Avastin wouldn't really have side effects except perhaps high blood pressure, and fatigue. The blood pressure they'll just keep an eye on at my appointments and if needed, they'll put me on meds for it. The Interferon is where the side effects will come and give me problems. I am going to have flu symptoms like crazy and perhaps some other symptoms. I can't remember what all of them are. The Interferon I'll have to take three times a week.
So after this we asked Marla (she's the lady I go to to make any of my appointments. I give her the paperwork, she makes the schedule) to get ahold of Sharon (my nurse) because I had an appt with her. I dont know why, but my dad decided this was a good time to take off and have a cigarette. Sharon and my pharmacist Anna came out just a few minutes later but we needed my dad to be there. I tried to call him but it went strait to voicemail. I tried calling back about 7 minutes later and he answered and said he'd be up in a minute. He had been on the phone with my mom, updating her. So, my dad, Anna and I went into a little conference room. She was going to teach me the proper way to inject my Interferon shots. I was able to use some saline solution and inject it into this weird fake flesh colored thing. Good thing I got to practice and that my dad was there to learn about it all too. I almost did it wrong.
After this we had a little over an hour before i was due in the Infusion department to start the Avastin. My dad and I took a little walk up the street to a cafe (which I won't title because that would be defaming it really...) It took forever for the lady to come up to us to order. The place was pretty busy but it was just the one waitress and then one guy behind the bar cooking. Once we ordered, it took forever to get the food. In fact, it took so long that i ended up taking off to get to my appt in time and my dad had to catch up with me later with the food.
I checked in at the Infusion desk and it was interesting because just like at restaurants, they give you those square pager things that light up and buzz when it's your turn. I was reading a magazine (Ugh,getting tired of those) and waiting for mine to light up when my dad showed up with the lunch I had ordered. He said his sandwich left a lot to be desired. The little pizza I ordered had the same effect. I didn't even finish it.
My pager went off and they told us to go to room 8. It took us some time to find it. There are like 60 rooms back there. It was weird because we thought maybe we had the wrong room. We waited, and waited. I turned on the tv and found Fullhouse was on.. (that was like the only thing..) After almost 20 minutes, we asked a nurse walking by if someone was going to come in to talk to us. She told us to hit the nurse call button. I did and some girl came in. We told her this was our first time here and no one had come in yet to talk to us. She seemed surprised and asked if we wanted a tour. A bit confused, we said yes. She took us down the hall and showed us which rooms get which nurses desk (There were so many, seriously!!) where we could find warm blankets (why do they have such thin blankets anyway?) and then, this is where we were a little bummed and upset, she showed us both kitchen areas where they have tons of free food and drinks that are self serve. Seriously? You mean we didn't have to go to that dumb cafe after all? They have tons of options and I'm kinda excited to take advantage of that in the future. When we got back to the room, we had to wait like another 10 minutes before a nurse came in. So, basically we had been back there for about an hour at this point. The nurse said or asked something and we told her no one had come back to us yet. And also that this was our very first time to the infusion center. She kept apologizing and how this was a bad first impression. She said a nurse that was supposed to take care of my room went off for a lunch break and that she was covering and just remembered to come take care of us.. (or some crap like that). She was actually quite nice about it and I was not comforted when the nurse that went off to have lunch came in... ugh my dad and i both didn't care for her. It was weird how she didn't really want to open her mouth when she talked. Plus, she seemed really spacey.
The first nurse then proceeded to fit me with an IV. I have HORRIBLE veins. They are super shy and won't come out. She tried (and it kinda hurt) to put one in on my hand, right next to where I had the blood drawn earlier, but after a while had to take it out because it wasn't working. She eventually got it to work in my arm near my elbow pit. :) They have to be really careful because of the type of drug that this is, if it leaks out at all, there can be major problems, so they try to avoid joints. I'm not going to say this was a painless process. I hate needles and this just fueled that hate.
It took 30 minutes to get all the Avastin in and then they have to do a flush which takes 10 minutes. After that, they took out the IV and sent us home. (We took some food and drinks with us to go, ha ha) We stopped by to see Marla and get my finished treatment schedule. Then it was off to horrible traffic we went. :)
* This asterisk meant that the start date has some issues... Dr. Tykodi WANTS me to start the Interferon come Monday, but I won't be able to because my DSHS hasn't been approved yet. This is turning into a mess. My dad finally got a hold of someone over there and they weren't happy with what I had turned in to them or something. I don't know. If I could just go in to talk with someone there instead of them sending us little letters saying what they need, it'd probably work out better. So, the deal is, we are going to try for DSHS this week because Dr. Tykodi doesn't want me to wait any longer than the following Monday to start. Hopefully all of this will work out.
Well, that's about it I guess, unless I think of more to put up later. I hope all is well with you and yours aaaaaaaaaaaaaand I hope these meds work to kick cancers butt.
-Mallory
My trip to the SCCA on Wednesday was actually longer than my trip last Friday, thankfully it didn't feel as long. We showed up and I had to do a blood draw. A little girl was back there getting a shot or something but she was screaming bloody murder. Made me sad to think a little girl was there. It took a little while but they found a vein and managed to take some blood. Then we went upstairs and waited for a bit to see Dr. Tykodi. A lady with a little cart walked around offering people juice, water and crackers. All free. Cool! We went back and the nurse weighed me and I was actually pleased to see I have not lost any weight. I think I've finally hit a plateau. I have lost far too much weight in a short enough period, so I'm ok where I'm at. My blood pressure was fine too. Well, i had to lay down on the table because I was so exhausted. It took at least a half hour before he came in to see us. He told me that my MRI and Bone Scan were fine. Nothing stood out to them that we should be worried about. Phew!!
Basically he went over what he has before about my meds. My dad had really been confused before.
My medical treatment is as thus: Starting this last Wednesday (10-20-10) I would receive through IV Bevacizumab (Avastin) every other wednesday at the SCCA. Starting next Monday* (10-25-10) I would start through an under the skin shot Interferon. I would first start with 300 million, then up to 600 million and then the highest i'd probably go is 900 million. The Avastin wouldn't really have side effects except perhaps high blood pressure, and fatigue. The blood pressure they'll just keep an eye on at my appointments and if needed, they'll put me on meds for it. The Interferon is where the side effects will come and give me problems. I am going to have flu symptoms like crazy and perhaps some other symptoms. I can't remember what all of them are. The Interferon I'll have to take three times a week.
So after this we asked Marla (she's the lady I go to to make any of my appointments. I give her the paperwork, she makes the schedule) to get ahold of Sharon (my nurse) because I had an appt with her. I dont know why, but my dad decided this was a good time to take off and have a cigarette. Sharon and my pharmacist Anna came out just a few minutes later but we needed my dad to be there. I tried to call him but it went strait to voicemail. I tried calling back about 7 minutes later and he answered and said he'd be up in a minute. He had been on the phone with my mom, updating her. So, my dad, Anna and I went into a little conference room. She was going to teach me the proper way to inject my Interferon shots. I was able to use some saline solution and inject it into this weird fake flesh colored thing. Good thing I got to practice and that my dad was there to learn about it all too. I almost did it wrong.
After this we had a little over an hour before i was due in the Infusion department to start the Avastin. My dad and I took a little walk up the street to a cafe (which I won't title because that would be defaming it really...) It took forever for the lady to come up to us to order. The place was pretty busy but it was just the one waitress and then one guy behind the bar cooking. Once we ordered, it took forever to get the food. In fact, it took so long that i ended up taking off to get to my appt in time and my dad had to catch up with me later with the food.
I checked in at the Infusion desk and it was interesting because just like at restaurants, they give you those square pager things that light up and buzz when it's your turn. I was reading a magazine (Ugh,getting tired of those) and waiting for mine to light up when my dad showed up with the lunch I had ordered. He said his sandwich left a lot to be desired. The little pizza I ordered had the same effect. I didn't even finish it.
My pager went off and they told us to go to room 8. It took us some time to find it. There are like 60 rooms back there. It was weird because we thought maybe we had the wrong room. We waited, and waited. I turned on the tv and found Fullhouse was on.. (that was like the only thing..) After almost 20 minutes, we asked a nurse walking by if someone was going to come in to talk to us. She told us to hit the nurse call button. I did and some girl came in. We told her this was our first time here and no one had come in yet to talk to us. She seemed surprised and asked if we wanted a tour. A bit confused, we said yes. She took us down the hall and showed us which rooms get which nurses desk (There were so many, seriously!!) where we could find warm blankets (why do they have such thin blankets anyway?) and then, this is where we were a little bummed and upset, she showed us both kitchen areas where they have tons of free food and drinks that are self serve. Seriously? You mean we didn't have to go to that dumb cafe after all? They have tons of options and I'm kinda excited to take advantage of that in the future. When we got back to the room, we had to wait like another 10 minutes before a nurse came in. So, basically we had been back there for about an hour at this point. The nurse said or asked something and we told her no one had come back to us yet. And also that this was our very first time to the infusion center. She kept apologizing and how this was a bad first impression. She said a nurse that was supposed to take care of my room went off for a lunch break and that she was covering and just remembered to come take care of us.. (or some crap like that). She was actually quite nice about it and I was not comforted when the nurse that went off to have lunch came in... ugh my dad and i both didn't care for her. It was weird how she didn't really want to open her mouth when she talked. Plus, she seemed really spacey.
The first nurse then proceeded to fit me with an IV. I have HORRIBLE veins. They are super shy and won't come out. She tried (and it kinda hurt) to put one in on my hand, right next to where I had the blood drawn earlier, but after a while had to take it out because it wasn't working. She eventually got it to work in my arm near my elbow pit. :) They have to be really careful because of the type of drug that this is, if it leaks out at all, there can be major problems, so they try to avoid joints. I'm not going to say this was a painless process. I hate needles and this just fueled that hate.
It took 30 minutes to get all the Avastin in and then they have to do a flush which takes 10 minutes. After that, they took out the IV and sent us home. (We took some food and drinks with us to go, ha ha) We stopped by to see Marla and get my finished treatment schedule. Then it was off to horrible traffic we went. :)
* This asterisk meant that the start date has some issues... Dr. Tykodi WANTS me to start the Interferon come Monday, but I won't be able to because my DSHS hasn't been approved yet. This is turning into a mess. My dad finally got a hold of someone over there and they weren't happy with what I had turned in to them or something. I don't know. If I could just go in to talk with someone there instead of them sending us little letters saying what they need, it'd probably work out better. So, the deal is, we are going to try for DSHS this week because Dr. Tykodi doesn't want me to wait any longer than the following Monday to start. Hopefully all of this will work out.
Well, that's about it I guess, unless I think of more to put up later. I hope all is well with you and yours aaaaaaaaaaaaaand I hope these meds work to kick cancers butt.
-Mallory
Sunday, October 17, 2010
A day in Radiology
On Friday, my dad and I went down to the SCCA for me to do some tests. We got there about noon and picked up a prescription I put in on Wednesday. Then we went to the 2nd floor where all my appointments were. (There are 7 floors there) They called me back to draw some blood and inject me with this radioactive stuff for my bone scan later. I don't know how hard it is for nurses to find veins to poke into, but I seem to always find the ones that really still have no clue how to do it. Let's just say where this nurse put it was not comfortable and I have a big bruise now and it feels funny in my arm, two days later.
After they did that I went to a little waiting room before my MRI. I basically was forced to read an extremely outdated People magazine. That was the only thing to do there. Then they came and brought me into the room for the MRI. They gave me ear plugs and I got on the bed. Then they put these huge headphones on and moved me into the machine and put some things around my head so I wouldn't move it. You have to lay really perfectly still for this test. I was able to listen to Lifehouse-Who We Are for the 30 minutes of testing. Then they pulled me back out, injected some stuff in me and put me back in for 10 more minutes.
I went back to the recovery room, where I was originally when they drew the blood, and was given juice and cookies. They finally (this was several hours later mind you) took out the IV from my arm. It had been so uncomfortable. Then I went and joined my restless father in the waiting room. We waited for about 45 minutes before they called me back for my bone scan.
The bone scan was interesting. The guy strapped me onto the bed (that sounds bad..) and then I couldn't move ANYTHING at all during the whole imaging process. The "camera" aka freaking huge square thing, got really close to my face and slowly moved down my body to take images of my bones. We had to redo my toes at the end because I was hanging over the bed a little and the tips got cut off on the images. Then the guy did two more images of my left side of my rib cage. He said he saw something but was pretty sure it might be from my biopsy. He has to get the scan approved by the radiologist before letting me go in case they see something and want additional tests. Well, she wanted even more imaging on my left rib cage. I had to have my arms above my head the entire time. It slowly went 180* around me and oh my goodness. My right arm was hurting so bad. At the end, they had to move my arms for me because they were so dead.
I received juice and string cheese and was then free to go. When I got out to the waiting area, my dad literally was the only person out there. Even the receptionists were gone. It was past 6. What a day!
I go back on Wednesday to do a bunch of other stuff but Dr Tykodi will go over my results with me then. I'm a little nervous about what they might have seen on my left rib cage. I've heard of Kidney Cancer patients having to have ribs removed. Hopefully all will be ok and I wont have to have that.
Until next time...
-Mallory
After they did that I went to a little waiting room before my MRI. I basically was forced to read an extremely outdated People magazine. That was the only thing to do there. Then they came and brought me into the room for the MRI. They gave me ear plugs and I got on the bed. Then they put these huge headphones on and moved me into the machine and put some things around my head so I wouldn't move it. You have to lay really perfectly still for this test. I was able to listen to Lifehouse-Who We Are for the 30 minutes of testing. Then they pulled me back out, injected some stuff in me and put me back in for 10 more minutes.
I went back to the recovery room, where I was originally when they drew the blood, and was given juice and cookies. They finally (this was several hours later mind you) took out the IV from my arm. It had been so uncomfortable. Then I went and joined my restless father in the waiting room. We waited for about 45 minutes before they called me back for my bone scan.
The bone scan was interesting. The guy strapped me onto the bed (that sounds bad..) and then I couldn't move ANYTHING at all during the whole imaging process. The "camera" aka freaking huge square thing, got really close to my face and slowly moved down my body to take images of my bones. We had to redo my toes at the end because I was hanging over the bed a little and the tips got cut off on the images. Then the guy did two more images of my left side of my rib cage. He said he saw something but was pretty sure it might be from my biopsy. He has to get the scan approved by the radiologist before letting me go in case they see something and want additional tests. Well, she wanted even more imaging on my left rib cage. I had to have my arms above my head the entire time. It slowly went 180* around me and oh my goodness. My right arm was hurting so bad. At the end, they had to move my arms for me because they were so dead.
I received juice and string cheese and was then free to go. When I got out to the waiting area, my dad literally was the only person out there. Even the receptionists were gone. It was past 6. What a day!
I go back on Wednesday to do a bunch of other stuff but Dr Tykodi will go over my results with me then. I'm a little nervous about what they might have seen on my left rib cage. I've heard of Kidney Cancer patients having to have ribs removed. Hopefully all will be ok and I wont have to have that.
Until next time...
-Mallory
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