The next morning, I woke up feeling reasonably good. Mom was here and planning on going to work herself. I didn't feel one bit nautious. I thought about going to work for a few hours later that day. I showered and started thinking about going in to work and felt instant panic. I thought about all the people who knew why I wasn't at work yesterday and knew of my situation and all the incessant questions I was going to get. When a person is sick, it doesn't give anyone permission to ask personal questions. It doesn't give you permission to tell me to "really feel the sadness and pain" until I cry at work, it's not ok to ask me personal questions about my medical history. Just because I have cancer doesn't mean it gives everyone the right to prod and pry!
Anywho...I started freaking out when getting dressed and talked to my mom about it. I knew once I walked in the building it was all I would be talking about all day with dozens of people.
When I got there, I kept quiet, though everyone was surprised to see me. My boss and soon to be boss stopped in my office and asked how I was feeling- I said that I was feeling ok but I needed to get my mind off it-choking back the tears. They saw it and immediately left my office. Awkward! I worked for about 2 hours and went home...pretty much humiliated.
Mom called later that day and I told her I was home, she was asking lots of questions if I was sick, I said that I wasn't but I couldn't think straight, I was shaking, I was sweating incessantly and I just didn't want to be there. I just slept the rest of the day.
Tuesday, June 30, 2009
The Real first day of chemo
Mom and I went AGAIN for my first day of chemo. I was much calmer than on Friday. The chemo itself took about 5 1/2 hours, but at least I didn't have to go through the whole riggamarow with the labs and seeing the doctor again!
They monitored me pretty close, taking a lot of vitals and making sure I didn't die or anything. The nurses were all really nice, explained what was going on when they did it. One of them asked me when she was getting me ready to leave if I had started making plans for what I'm going to do when my hair falls out. I told her that's the issue where I lose my cool- and started balling again. She encouraged me to get some scarves or a wig- that way I have them when I need them. If I don't need them, no big deal! When we were done, mom and I went to Chili's for lunch. I felt fine!
That night Barb from work came over to visit, it was around 7-8 when I started feeling completely exhausted. Went to bed and didn't set the alarm, planning on staying home on Tuesday.
They monitored me pretty close, taking a lot of vitals and making sure I didn't die or anything. The nurses were all really nice, explained what was going on when they did it. One of them asked me when she was getting me ready to leave if I had started making plans for what I'm going to do when my hair falls out. I told her that's the issue where I lose my cool- and started balling again. She encouraged me to get some scarves or a wig- that way I have them when I need them. If I don't need them, no big deal! When we were done, mom and I went to Chili's for lunch. I felt fine!
That night Barb from work came over to visit, it was around 7-8 when I started feeling completely exhausted. Went to bed and didn't set the alarm, planning on staying home on Tuesday.
Friday, June 26, 2009
First Chemo
I slept horribly last night- not even the ambien helped. On the way to the Cancer Center I started getting really nervous and worked up again so I needed to give it one last good cry before walking through the door. My mom said to me "you need to tell me what you want. I don't know what to do either so you need to tell me if I'm doing too much or not enough." I'm not really good asking for help but I'm really good at yelling at people when enough is enough :) I really didn't even know what to expect out of this. Steph and I had watched a documentary of a lady going through chemo and radiation for breast cancer and one phrase that she said during the movie was referring to her own mother who had been with her thorugh the entire treatment. She said "may I never know the pain of having a child who has cancer..." I couldn't imagine- sometimes I think its easier to go through it because I know I'm going to be ok- it totally sucks but I'll be ok. Only I know what I can handle and what I can't handle, and this I can handle. Never said I was happy about it though! :)
After sitting in the cancer center for 2 1/2 hours I was sent home sans chemo because they were backed up and "ran out of time" and the lady who delivered the news was less than friendly about it. My mom and sister were with me. I was like R U KIDDING ME?? It was already 3:15 and I was being sent home because the chemo takes at least 3 hours and they stop working at 5:30- I wish I could just stop working at 5:30! So now I have to psych my self up to walk in that door again on Monday, which means every Monday for three weeks- unplanned.
Steph had met with the social worker ther earlier in the week about different kinds of help that I might qualify for. But since I have a job and I make more than $150 a month, I'm not eligible for any of it. The nice lady gave me some cool stuff to keep my bills organized and a set of necklaces that spell out JOURNEY, that I'm supposed to give to my close friend and family who will be with me on the 'journey'- yep, started balling again. Never gave them out either, the thought was there but seems like a lot of effort that I don't have right now!
After sitting in the cancer center for 2 1/2 hours I was sent home sans chemo because they were backed up and "ran out of time" and the lady who delivered the news was less than friendly about it. My mom and sister were with me. I was like R U KIDDING ME?? It was already 3:15 and I was being sent home because the chemo takes at least 3 hours and they stop working at 5:30- I wish I could just stop working at 5:30! So now I have to psych my self up to walk in that door again on Monday, which means every Monday for three weeks- unplanned.
Steph had met with the social worker ther earlier in the week about different kinds of help that I might qualify for. But since I have a job and I make more than $150 a month, I'm not eligible for any of it. The nice lady gave me some cool stuff to keep my bills organized and a set of necklaces that spell out JOURNEY, that I'm supposed to give to my close friend and family who will be with me on the 'journey'- yep, started balling again. Never gave them out either, the thought was there but seems like a lot of effort that I don't have right now!
Thursday, June 25, 2009
The night before Chemo...
So tomorrow is my first day of chemo. Not too focused on that right now, I was able to occupy my mind with all the stuff I need to get done in case I get sick and can't do anything! Cleaning, laundry, getting new bedding on my bed. Mom is staying from now till whenever I am feeling good enough for her to leave.
I have a horrible fear I might cry through the entire process tomorrow so I'm going to be sure to take my anxiety meds plenty of time ahead to try and prevent that. It's a chain reaction, if I start, mom will start and it can get pretty ugly. Crying in public is usually something I try to avoid, but has become far too common lately! It's incredibly embarassing, but what can ya do?
I have a horrible fear I might cry through the entire process tomorrow so I'm going to be sure to take my anxiety meds plenty of time ahead to try and prevent that. It's a chain reaction, if I start, mom will start and it can get pretty ugly. Crying in public is usually something I try to avoid, but has become far too common lately! It's incredibly embarassing, but what can ya do?
Friday, June 19, 2009
Today I met with another medical oncologist- mine had an emergency and was out of the office for two weeks. He explained that there was a new study done showing that this kind of cancer "triple negative" responded to a regimin of two different drugs over a 6 month period. It would be a cycle of three weeks in a row of chemo and one week off. I was set to be on Fridays so it wouldn't interfere with my work schedule too much. The Dr. asked me if I had made any decision about what I wanted to do about my hair, when it starts to fall out- that's my cue to start crying. He told me that his wife had breast cancer and lost all her hair, but she had a lot of fun with the different wigs she had. I'm pretty sure he was just trying to make me feel better because I don't know anyone who would chose to lose their hair so they can wear a wig! He wanted me to go to a "Chemo Orientation" today, but the chemo room was really busy, so I would come back later in the day for that.
When we came back for that, the nurse put us in one of the treatment rooms they use for chemo with a video playing. The video was very cheesy, went through all the side affects of all kinds of chemo. I tried to keep the tears at bay when they were talking about the 'emotional' issues the come along with going through chemo, not just for the patient but for the caretaker and family members. After the movie, the nurse came back in with two printouts for me and Mom. It had the name of the two drugs I would be taking, and all the side affects that come along with each one. As we went through some of them, I started in crying again, and so did mom. It was becoming all to real that I was really going to have to do this. It was horrible but the nurse was super awesome! She started tearing up at one point too.
When we came back for that, the nurse put us in one of the treatment rooms they use for chemo with a video playing. The video was very cheesy, went through all the side affects of all kinds of chemo. I tried to keep the tears at bay when they were talking about the 'emotional' issues the come along with going through chemo, not just for the patient but for the caretaker and family members. After the movie, the nurse came back in with two printouts for me and Mom. It had the name of the two drugs I would be taking, and all the side affects that come along with each one. As we went through some of them, I started in crying again, and so did mom. It was becoming all to real that I was really going to have to do this. It was horrible but the nurse was super awesome! She started tearing up at one point too.
Thursday, June 11, 2009
Porta-what?
I'm writing this a while after all this actually took place. My dear pal Jody had asked me one time about my porta-cath. I didn't know what the hell she was talking about, I think I made her repeat it 5 times, I thought she was talking about my Mom, Kath.
I went to work the morning I was getting the port 'installed.' I couldn't have anything to eat or drink after midnight the night before, it was really hard not to make my morning stop by the kum and go for a giant Dt. Mt. Dew! I think my car naturally pulls that direction.
I got all checked in and Mom and I went to Same Day Surgery. They told me to wear a bra that was typical of the style I usually wear, the surgeon would mark my skin around the bra so it wouldn't rub on the port. It was pretty quick, I was starving as we waited!
They came to take me for surgery and I got a little panicked- maybe it's the hairnet, it's not flattering at all. I was worried about being awake for the surgery, they said they would just give me a little something to calm me down and that most people talk through the whole thing but they don't remember it at all, but that I wouldn't say anything that I wouldn't normally say- that doesn't go too far.
I talked to the anesthesiologist the entire time while we were getting ready. I told her about my recent promotion at work, she was from Correctionville so we talked about that for a while. She asked how my work was accommodating my crazy schedule with the appts, which they have been totally awesome! When the doctor came in, we just carried on conversation the entire time. I had told the nurse about the book I planned on writing, "Are You F*n Kidding Me?" They thought it was hilarious, Dr. Volz said he would buy a copy. And then proceeded to say the title of the book over and over, which was kinda funny but a little scarey considering he was laughing, with a scalpal in his hand! It was good conversation and I'm not sure if its ok to say I had fun? I felt it a few times, mainly when they threaded the catheter over the collarbone and towards my heart. But nothing too bad. When it was all over, Dr. Volz said he was going to talk to my mom.
I was a little sore that night but didn't have too many problems. Steph came over that night and I was trying to find something to wear to cover the giant gauze pads that were on my neck and chest. I had tried on several things but I was very self concious of it showing in all of them. That night I went to bed and about 45 minutes later, the door bell rang. It was nearly 11 Pm, Kim got up and answered the door, no one was there but a bag of clothes and a note from "The Cancer Fairey". Steph had gone and bought me two scarves and matching tops so my patches didn't show. Tear!...
The next day I went to work because we were meeting with insurance companies who had put in bids for us to renew our contract with them. I really wanted to be there for that, and no one told me I couldn't work or what kind of recovery would be involved. I was sitting in the meeting across from my boss and soon-to-be boss. I was really starting to feel bad, hot, sore and just miserable. After the meeting my boss asked me if I needed to go home and I just said YES and Tiffney drove me home.
It took quite a while to heal up, I could feel it when I talked, coughed, laughed, turned my head, rolled over in bed, all the time. I hated it!
When I returned to the surgeon for my week check up I was very clear about how I felt about the stupid thing. He kept telling me that some day I'll like it. When he said that I said something like "whatever, I guess if I have to have it..." and he responded by telling me that I'd gone from really sad to just crabby! I think we were spending way to much time together! :)
I went to work the morning I was getting the port 'installed.' I couldn't have anything to eat or drink after midnight the night before, it was really hard not to make my morning stop by the kum and go for a giant Dt. Mt. Dew! I think my car naturally pulls that direction.
I got all checked in and Mom and I went to Same Day Surgery. They told me to wear a bra that was typical of the style I usually wear, the surgeon would mark my skin around the bra so it wouldn't rub on the port. It was pretty quick, I was starving as we waited!
They came to take me for surgery and I got a little panicked- maybe it's the hairnet, it's not flattering at all. I was worried about being awake for the surgery, they said they would just give me a little something to calm me down and that most people talk through the whole thing but they don't remember it at all, but that I wouldn't say anything that I wouldn't normally say- that doesn't go too far.
I talked to the anesthesiologist the entire time while we were getting ready. I told her about my recent promotion at work, she was from Correctionville so we talked about that for a while. She asked how my work was accommodating my crazy schedule with the appts, which they have been totally awesome! When the doctor came in, we just carried on conversation the entire time. I had told the nurse about the book I planned on writing, "Are You F*n Kidding Me?" They thought it was hilarious, Dr. Volz said he would buy a copy. And then proceeded to say the title of the book over and over, which was kinda funny but a little scarey considering he was laughing, with a scalpal in his hand! It was good conversation and I'm not sure if its ok to say I had fun? I felt it a few times, mainly when they threaded the catheter over the collarbone and towards my heart. But nothing too bad. When it was all over, Dr. Volz said he was going to talk to my mom.
I was a little sore that night but didn't have too many problems. Steph came over that night and I was trying to find something to wear to cover the giant gauze pads that were on my neck and chest. I had tried on several things but I was very self concious of it showing in all of them. That night I went to bed and about 45 minutes later, the door bell rang. It was nearly 11 Pm, Kim got up and answered the door, no one was there but a bag of clothes and a note from "The Cancer Fairey". Steph had gone and bought me two scarves and matching tops so my patches didn't show. Tear!...
The next day I went to work because we were meeting with insurance companies who had put in bids for us to renew our contract with them. I really wanted to be there for that, and no one told me I couldn't work or what kind of recovery would be involved. I was sitting in the meeting across from my boss and soon-to-be boss. I was really starting to feel bad, hot, sore and just miserable. After the meeting my boss asked me if I needed to go home and I just said YES and Tiffney drove me home.
It took quite a while to heal up, I could feel it when I talked, coughed, laughed, turned my head, rolled over in bed, all the time. I hated it!
When I returned to the surgeon for my week check up I was very clear about how I felt about the stupid thing. He kept telling me that some day I'll like it. When he said that I said something like "whatever, I guess if I have to have it..." and he responded by telling me that I'd gone from really sad to just crabby! I think we were spending way to much time together! :)
Monday, June 8, 2009
Maybe not!
The following Monday I saw my surgeon, Dr. Volz who is pretty much one of the awesome-ist doctors I've ever seen, and I've seen a lot of them. Mom and Amy also came again to listen and ask questions for me. I received a schedule from the Cancer Center over the weekend that had me scheduled for chemo on 6/19, which there was no way that was happening. I explained some of the things that DD and I had talked about and the two of them had actually discussed my situation over the weekend. He told me again that he felt it was ok to continue without a mastectomy. He felt that the pathology report from the lumpectomy was stronger than a possibility of something still being there on the MRI. I was waiting for someone to tell me what to do! That would make things so much easier! I was 90% sure walking into his office that I was ready to have a mastectomy, but I was concerned that they were in a rush to get me started on chemo. I didn't want to start chemo already feeling like crap, fresh off a double mastectomy. I was terrified of the pain and the reconstruction. I asked mom and Amy what they thought I should do. Mom had hinted previoiusly that she didn't think a mastectomy was a good idea so soon, and she said it again today. Amy felt the same way so I said "OK, I wanna keep my boobs!" no take backs!
I had gotten the results of the BRCA test back that morning and they were negative! I'm a "sporadic" case, meaning there's no damn reason they can attribute to why my life is turned upside down!
Next plan was to get my surgery for my port scheduled, which would be in 3 days.
I had gotten the results of the BRCA test back that morning and they were negative! I'm a "sporadic" case, meaning there's no damn reason they can attribute to why my life is turned upside down!
Next plan was to get my surgery for my port scheduled, which would be in 3 days.
Friday, June 5, 2009
More decisions to make
Today I met with my medical oncologist Dr. Doodlebop, Mom and Amy came along. We went through the results of the PETscan, which was pretty much the coolest thing I've ever seen!
DD (Dr. Doodlebop we'll call him) started out by saying that I'm in a very unique situation, and on and on, kind of stuttering over his words as he was holding the lab report from the PETscan. I was just staring at him wide eyed because I was now starting to think something was seriously the matter. He said there was still a lot of swelling from the lumpectomy that was showing on the scan, and also that near my neck area there was a lot of activity, which lights up the screen, but that was normal. He also explained that there are small black spots on my lungs, which I was now expecting him to tell me I had some kind of lung cancer- I was honestly shitting my pants by this point. I had to be near passing out, I could only hear my heart pounding and I was bright red- I could see the words on his paper "lung...leasion" How the hell was I going to have lung cancer? I can not put into words how much I hate smoke, how I avoid it, certain resturants I avoid because the smell was so bad- but now I was thinking he was going to tell me I had lung cancer. FInally, after what seemed like an hour he told me they considered the scan to be negative- although the swelling from the lumpectomy lit up as though a cancer would, it was just the swelling lighting up, not cancer. I felt spent after that, I didn't know how bad it could get until that point when I thought it was possible that I had more cancer, more serious cancer.
He showed me the scan on the computer monitor, it was the coolest thing I'd ever seen. It was like looking at a skinned pig- you could see all the fibers in the muscles as he started near my theighs and scrolled up my body on the computer monitor. You could see all my organs, and lack of one kidney. The craziest part was that you could see one small spot lit up in my ovary. He asked me when my last period was, which was two days after I had the scan done. He explained that it was an egg, which is normal to show that bright close to my period. Holy Crap!
We discussed the details of additional surgery for the lymphnodes that may need to be removed, fertility after all this is said and done, chemo schedule, possiblility of needing to remove the ovaries (so I need to hurry and have some babies I guess) as a preventative measure as breast cancer and ovarian cancer are closely linked. We didn't have the results back yet for the BRCA tests, which was going to make my decision to have a mastectomy so much easier, but we still discussed it. I told the doctor that I wasn't opposed to it if it increased my chances of never having to deal with this BS again. He told me that I seemed to be very calm today (which is a far cry from how I had been on our last visit)- I'm not really sure what my problem was, I think I was just pissed off at the world today. I wasn't sad anymore, just mad that I had to deal with this when all things (age, pre-menopause, no family history) pointed towards "no". I was feeling pretty confident when I left his office that I wanted to be overly aggressive treating the cancer and that I was probably going to be having a mastectomy. I thought I had my mind made up until...
DD (Dr. Doodlebop we'll call him) started out by saying that I'm in a very unique situation, and on and on, kind of stuttering over his words as he was holding the lab report from the PETscan. I was just staring at him wide eyed because I was now starting to think something was seriously the matter. He said there was still a lot of swelling from the lumpectomy that was showing on the scan, and also that near my neck area there was a lot of activity, which lights up the screen, but that was normal. He also explained that there are small black spots on my lungs, which I was now expecting him to tell me I had some kind of lung cancer- I was honestly shitting my pants by this point. I had to be near passing out, I could only hear my heart pounding and I was bright red- I could see the words on his paper "lung...leasion" How the hell was I going to have lung cancer? I can not put into words how much I hate smoke, how I avoid it, certain resturants I avoid because the smell was so bad- but now I was thinking he was going to tell me I had lung cancer. FInally, after what seemed like an hour he told me they considered the scan to be negative- although the swelling from the lumpectomy lit up as though a cancer would, it was just the swelling lighting up, not cancer. I felt spent after that, I didn't know how bad it could get until that point when I thought it was possible that I had more cancer, more serious cancer.
He showed me the scan on the computer monitor, it was the coolest thing I'd ever seen. It was like looking at a skinned pig- you could see all the fibers in the muscles as he started near my theighs and scrolled up my body on the computer monitor. You could see all my organs, and lack of one kidney. The craziest part was that you could see one small spot lit up in my ovary. He asked me when my last period was, which was two days after I had the scan done. He explained that it was an egg, which is normal to show that bright close to my period. Holy Crap!
We discussed the details of additional surgery for the lymphnodes that may need to be removed, fertility after all this is said and done, chemo schedule, possiblility of needing to remove the ovaries (so I need to hurry and have some babies I guess) as a preventative measure as breast cancer and ovarian cancer are closely linked. We didn't have the results back yet for the BRCA tests, which was going to make my decision to have a mastectomy so much easier, but we still discussed it. I told the doctor that I wasn't opposed to it if it increased my chances of never having to deal with this BS again. He told me that I seemed to be very calm today (which is a far cry from how I had been on our last visit)- I'm not really sure what my problem was, I think I was just pissed off at the world today. I wasn't sad anymore, just mad that I had to deal with this when all things (age, pre-menopause, no family history) pointed towards "no". I was feeling pretty confident when I left his office that I wanted to be overly aggressive treating the cancer and that I was probably going to be having a mastectomy. I thought I had my mind made up until...
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