Yesterday, I had a "power port" put in to make chemo easier. At this point, a lot of people have told me how this will make my life so much easier so I am mostly happy with the decision to get one (not that I really had a choice). Mom and I headed to the hospital (for what was my 8th surgery in the last 9 years after no surgeries for my first 32 years) a little before 7am. Once again, my neighbor/friend Jen took the kids in, fed them breakfast and got them on the bus. Not sure what I would do without all these amazing women who have become such great friends in the year we have lived in Hopkinton!
Day Surgery was hopping when we arrived but luckily things ran pretty close to schedule (only about 30 minutes late). My pre-op nurse, Alicia was super nice. She got me all settled. Before surgery I met with the anesthesia doctor who told me, in the unlikely event that I woke up during the surgery, that I should not move. That was a bit unsettling but I told her I would do my best not to move. The surgeon's physician's assistant, Chris, also came to see me. He did a quick ultrasound of the surgical area to make sure everything looked good. He told me since I am so thin he could perfectly see my veins and the valves (or something like that) inside of them and that they looked "perfect." (After so many years of being overweight, I still smile when a doctor tells me I am thin.) Both Chris and Alicia asked me who my oncologist was and when I told them it was Dr. Sinclair, they both had GREAT things to say about her. I am still a little concerned about the fact that I won't meet her until Tuesday morning so all these glowing reviews from others are putting my mind at ease.
They wheeled me into the operating room. I remember Chris standing next to me and then I was out until I woke up back in the Day Surgery unit. Before I became completely coherent, Mom and I were chatting but I don't remember what we talked about. Gotta love anesthesia. They did a quick chest x-ray to make sure the port was placed properly and then sent me on my way.
Chris had told me people likened the post-surgery feeling to being punched in the chest. I guess I would agree with that only it felt like five 300lb linebackers had punched me! I was pretty uncomfortable yesterday anytime I moved so I lay in bed for the rest of the day taking percocet every 4 hours. That made me so tired and loopy! I slept okay. It was so great to finally have Craig home. He had been away for work for most of the last week and a half and I really missed him.
Today, I made myself get out of bed and that has helped a lot. I even went for a walk with Craig and Tuukka. Although it is COLD outside, the fresh air and movement has done me a lot of good. Mom, Emily and I were supposed to go get my wig styled this morning, but I decided to reschedule since I am not up for driving yet.
All in all, am glad the port surgery is done. Next up, chemo on Tuesday! Hopefully I am mostly healed from the surgery. People sometimes get the port installed and go right to chemo. I cannot even imagine doing that! I am glad I have 3 days to heal.
Saturday, November 15, 2014
Friday, November 14, 2014
Port installed
Procedure this morning went well. I am a little sore and somewhat loopy from the Percocet so I'll write more later. Just wanted to let everyone know I am home and resting. I plan to watch some taped shows and sleep this afternoon!
Thursday, November 13, 2014
The week so far...
I have spent some quality time at Milford Hospital/Dana Farber this week.
First up was a pre-surgical appointment for the port placement. I was a little annoyed about having to actually go to the hospital for this since my pre-surgical appointment for my October surgery (at a different hospital) was done over the phone. Turns out the only reason they needed to see me was that they did not have my height and weight on file... something they could have gotten over the phone. I was a little annoyed but the nurse was apologetic. I did find out that I should be at the hospital for about 3 hours on Friday. I am having sedation, not general anesthesia, so that speeds up my exit. I don't even have to go to recovery. I found the anesthesia harder to recover from after the October surgery so I am happy to not go through that again.
Next, I was off to the "Look Good Feel Better" program which is put on by the American Cancer Society. You get a whole bunch of free high-end makeup (much of which I will not use since it is full of potentially cancer-causing chemicals). I did learn a few make-up application tips as well as what to do if/when you lose your eyebrows. My friend Jen came and all the the other participants were very nice to it was a fun event. There also was supposed to be a section about wigs and wig care but the woman that was supposed to do it was not able to come. Luckily the place where I am getting the wig will go through all the care instructions with me.
My final appointment on Wednesday was my "chemo teach" with Mary-Beth who will hopefully be my chemo nurse for every treatment. I LOVED HER! She is probably in her mid to late 30s and has 3 kids - 9, 5 and 3. She took me through each of the chemo drugs and their side effects, as well as all the other meds I can/will take to combat the side effects. The Infusion Suite is really nice. Each patient has their own private bay with a comfy chair and a tv. They come around with food, if you are there for lunch and have other snacks and drinks available. Mary-Beth had a lot of good things to say about Dr. Sinclair, when I told her I was a little nervous about not meeting the doctor until the morning of my first treatment. I have to have a shot the day after chemo to help with the white blood cell loss and I found out my neighbor (who is a nurse) can administer it, so I don't have to go back to Dana-Farber. I can keep teaching CCD but need to make sure the kids use hand sanitizer. Overall, it was a good appointment, but I was EXHAUSTED last night.
Today, I met with the dietician. There are 2 on staff and I chose the one who is vegetarian. She told me that my albumin level (measure of protein in the blood) was at the high end of normal so I am clearly getting enough protein in my diet. She said some doctors might be worried about the whole vegan thing but as long as I keep up with my current diet, I should be fine.
Now, my goal is to get a good night sleep tonight since we need to be at the hospital at 7:30am. I feel like tomorrow really begins the chemo part of this diagnosis!
First up was a pre-surgical appointment for the port placement. I was a little annoyed about having to actually go to the hospital for this since my pre-surgical appointment for my October surgery (at a different hospital) was done over the phone. Turns out the only reason they needed to see me was that they did not have my height and weight on file... something they could have gotten over the phone. I was a little annoyed but the nurse was apologetic. I did find out that I should be at the hospital for about 3 hours on Friday. I am having sedation, not general anesthesia, so that speeds up my exit. I don't even have to go to recovery. I found the anesthesia harder to recover from after the October surgery so I am happy to not go through that again.
Next, I was off to the "Look Good Feel Better" program which is put on by the American Cancer Society. You get a whole bunch of free high-end makeup (much of which I will not use since it is full of potentially cancer-causing chemicals). I did learn a few make-up application tips as well as what to do if/when you lose your eyebrows. My friend Jen came and all the the other participants were very nice to it was a fun event. There also was supposed to be a section about wigs and wig care but the woman that was supposed to do it was not able to come. Luckily the place where I am getting the wig will go through all the care instructions with me.
My final appointment on Wednesday was my "chemo teach" with Mary-Beth who will hopefully be my chemo nurse for every treatment. I LOVED HER! She is probably in her mid to late 30s and has 3 kids - 9, 5 and 3. She took me through each of the chemo drugs and their side effects, as well as all the other meds I can/will take to combat the side effects. The Infusion Suite is really nice. Each patient has their own private bay with a comfy chair and a tv. They come around with food, if you are there for lunch and have other snacks and drinks available. Mary-Beth had a lot of good things to say about Dr. Sinclair, when I told her I was a little nervous about not meeting the doctor until the morning of my first treatment. I have to have a shot the day after chemo to help with the white blood cell loss and I found out my neighbor (who is a nurse) can administer it, so I don't have to go back to Dana-Farber. I can keep teaching CCD but need to make sure the kids use hand sanitizer. Overall, it was a good appointment, but I was EXHAUSTED last night.
Today, I met with the dietician. There are 2 on staff and I chose the one who is vegetarian. She told me that my albumin level (measure of protein in the blood) was at the high end of normal so I am clearly getting enough protein in my diet. She said some doctors might be worried about the whole vegan thing but as long as I keep up with my current diet, I should be fine.
Now, my goal is to get a good night sleep tonight since we need to be at the hospital at 7:30am. I feel like tomorrow really begins the chemo part of this diagnosis!
Sunday, November 9, 2014
Thoracic Surgeon
On Friday, I met with the thoracic surgeon who will be installing my port-a-cath. I am still not 100% excited about this but a bunch of people I have talked to who have had cancer highly recommend getting one so I am slowly getting sold.
The appointment started out with me getting measured (my height). The nurse first took it in centimeters and then converted it into inches. She told me I was "just shy of 5'4". I was NOT happy as I was always between 5'4.5" and 5'4.75" so I basically have lost almost an inch. (And I am a bit sensitive about my height, or lack thereof.) The nurse did not seem to care much. It was not a good start.
Next, I met with the surgeon. He has a rather odd manner about him and kept minimizing (with little sympathy) some of my concerns with getting a port. I commented about not being happy about having yet scar. In a somewhat flippant manner commented about how "small" it is. Fine, it will be small but will be completely visible anytime I wear a bathing suit, summer dress, etc. All my other cancer related scars are hidden in clothes. As we wrapped up the appointment, he told me the port would be installed next Friday, just 4 days before chemo starts. I really wanted it to go in early this week so I had a week to heal. He told me (again a bit flippantly) that it wasn't a big deal since he technically could install it the day chemo started. This is definitely true but I have heard that it can hurt A LOT when you do it this way. He did not seem to care. I almost said, rather obnoxiously, "have YOU had a port installed and then had chemo the same day???"
I just got a bit overwhelmed by it all and how a bunch of things are just not going as "planned." I know I need to give up the illusion of control but it was just a day where I needed to have a little breakdown. I came home, cried to Mom for a few minutes and moved on. I was still in a funk for the rest of the day until Elizabeth and family stopped by as they were in our area for their son's (who is my godson) soccer game. (My funk was also due in part to Craig being out of town for the better part of the rest of our time before chemo.)
9 more days until the chemo "party" starts. This is a busy week of cancer stuff:
The appointment started out with me getting measured (my height). The nurse first took it in centimeters and then converted it into inches. She told me I was "just shy of 5'4". I was NOT happy as I was always between 5'4.5" and 5'4.75" so I basically have lost almost an inch. (And I am a bit sensitive about my height, or lack thereof.) The nurse did not seem to care much. It was not a good start.
Next, I met with the surgeon. He has a rather odd manner about him and kept minimizing (with little sympathy) some of my concerns with getting a port. I commented about not being happy about having yet scar. In a somewhat flippant manner commented about how "small" it is. Fine, it will be small but will be completely visible anytime I wear a bathing suit, summer dress, etc. All my other cancer related scars are hidden in clothes. As we wrapped up the appointment, he told me the port would be installed next Friday, just 4 days before chemo starts. I really wanted it to go in early this week so I had a week to heal. He told me (again a bit flippantly) that it wasn't a big deal since he technically could install it the day chemo started. This is definitely true but I have heard that it can hurt A LOT when you do it this way. He did not seem to care. I almost said, rather obnoxiously, "have YOU had a port installed and then had chemo the same day???"
I just got a bit overwhelmed by it all and how a bunch of things are just not going as "planned." I know I need to give up the illusion of control but it was just a day where I needed to have a little breakdown. I came home, cried to Mom for a few minutes and moved on. I was still in a funk for the rest of the day until Elizabeth and family stopped by as they were in our area for their son's (who is my godson) soccer game. (My funk was also due in part to Craig being out of town for the better part of the rest of our time before chemo.)
9 more days until the chemo "party" starts. This is a busy week of cancer stuff:
- Wednesday - Look Good, Feel Better program run by American Cancer Society and my chemo "teach" with the chemo nurse
- Thursday - meeting with cancer center dietician
- Friday - port install (be at hospital at 7:30am for 8:30am procedure. Thanks again to Jen for feeding kids breakfast and getting them on the bus).
Thursday, November 6, 2014
Wig shopping
My friend, Elizabeth and I went wig shopping today. The kids and I were talking about what color wig I should get. Emily was all for yellow/Goldilocks style. Raymond wanted brown. I was definitely in Raymond's camp.
I was pretty nauseous before leaving but did not get very emotional while trying on wigs. (Now, when Mom arrived... that is another story.) I liked the first wig I tried on since it is very close to my actual hair. It will be styled and cut while I am wearing it at my next appointment.
For fun, I decided to try on an "Elsa" wig (from the movie Frozen). Emily thinks I look "lovely" in those one but it is not my style. If I wanted to look like a local in Finland, this would be perfect!
Wednesday, November 5, 2014
MOM!
My Mom arrives tomorrow afternoon for a visit and I cannot wait! Craig will be out of town for most of the next 10 days (2 separate trips) so it will be great to have Mom here to help with the kids. I have a nasty cold right now that pretty much HAS to be gone by the weekend to keep chemo on schedule so a little Mom TLC will do me wonders right now. I went to bed at 6:30pm last night, convinced I was getting the flu but I feel WAY better this morning. Not back to normal but I don't have a fever or body aches anymore. I guess the lack of sleep and eating and overall stress caught up with me!
I met with the social worker at the hospital on Monday and I really liked her. It was nice to talk to someone who is not directly involved in my life about what I am feeling right now. I will continue to meet with her over the course of the next few months.
Tomorrow, I go wig shopping (assuming I am healthy enough) and then on Friday I meet with the thoracic surgeon to talk about the port. Fun times in cancer world!
I met with the social worker at the hospital on Monday and I really liked her. It was nice to talk to someone who is not directly involved in my life about what I am feeling right now. I will continue to meet with her over the course of the next few months.
Tomorrow, I go wig shopping (assuming I am healthy enough) and then on Friday I meet with the thoracic surgeon to talk about the port. Fun times in cancer world!
Saturday, November 1, 2014
Nesting
I feel like I am nesting right now like a woman who is 9 months pregnant... I have organized the pantry. Bought enough food for us to withstand about 3 months post-apocalypse. Put out all the hats, gloves and scarves for winter, while putting away all our summer stuff. For anyone that knows me well, I thrive when things are organized. ;) All this planning is keeping my mind off other stuff so that is definitely a good thing. 17 more days until we get going with the healing energy of chemo. (I am doing my best to put a positive spin on it.)
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