I had the first of many follow-up appointments with Dr. Bridges last
week on May 21... exactly 1 month after my final chemo treatment. They
took a blood sample to make sure everything was returning to normal.
The results were taking a long time and after waiting a while Dr.
Bridges said they would just call me if there were any problems. He
expected they would be fine.
Thanks to "MyChart" I was able to access
them later and seemed ok to me. My hemoglobin was up from 11.2 to 12 (normal
range is 12-15) so that was good. My hematocrit was up from 32.2 to
34.9 (normal range 36-48) so getting close to normal. My red cells were
3.97 (normal range 3.5-5.5). They had dropped over time but were
always within normal levels. My white cells were 3.8 which was lower
than I expected (normal range is 3.8 to 11). When they tested my blood
before my last chemo they were 11.4. Through my chemo treatments they
had been higher than normal thanks to the Neulasta shots. I assume the Neulasta has worn off and maybe the after-effects of chemo depressed them some and they will go up a bit over time. At least that's my medical opinion...
No one called me so guess I'm good to go. I will follow-up again with Dr.
Bridges again on August 25. By then I will have been on Tamoxifen for a
couple months. He wrote my prescription for it but I'm not supposed to
start taking it until after I finish radiation. He said I could even
wait until after the Fourth of July if I want. I might wait until after
Tara's wedding just in case I have any weird side effects.
I discussed with Dr. Bridges the annoying hot flashes I've been having. He asked if there was a particular time of day they seemed the worst. Not really... I get them in the morning, afternoon, evening, and they usually wake me up a couple of times at night. He said there are a some medications I could take that might help, but he would recommend trying acupuncture first. I like to avoid any unnecessary medications and so I'm glad that he is on the same page. Honestly, if taking a pill was my only option, I don't think I would do it. They are really bothersome, but I can live with it. I asked when they might go away? Maybe when my period comes back... will it come back? He said, given my age, it would probably come back... if I was in my 40's it would be less likely. But he said it could take at least 6 months. So who knows... guess I'll just try to be prepared at all times. I have an appointment with the acupuncturist next week on June 3.
Then he said, "We talked the Tamoxifen and it's side effects, right?" I said yes, oh, and the most common side effect is hot flashes, isn't it. Yep. Then he asked if I remembered how long he recommended I take it. How could I forget... 10 years sounds like such a long time. The good news is I would be done taking it before I turn 50... I guess that's good? Seems kind of depressing. So the problem is, yes, my cycle might resume, but by then I'll be taking tamoxifen... likely causing it's own hot flashes. I'm hoping that they might be different (less intense at least!) since they will be caused by the medication rather than right now, they are caused by my chemically induced menopause. I'm keeping my fingers crossed that I will have really minimal side effects from the medication, which is typically how I am with other medications.
Ten years... in 10 years it will be the year 2025. I will be 47 years old! It will be the year of Juan's 30 year high school reunion. The craziest part... Claire will be 17!! She'll be finishing her Junior year of high school. She'll be thinking about where she wants to go to college. Even Bryce will be teenager in 10 years! I think about all the things that will/could happen in the next 10 years... Will we still live in the same house? The same city? What vacations might we take? Will I still work at the Red Cross? What new babies might have joined our (extended) family? What loved ones might we have lost? And then it hits me... I'm assuming that I will still be around in 10 years. I can't imagine I won't, but once you have any type of cancer you never know. If you go down that road things really get depressing... think of all the things you could miss out on. I think that by completing all my treatments (surgery, chemo, radiation, and then hormone therapy/tamoxifen) my chance of still being around is over 90% (maybe like 96%? I can't remember exactly) so the odds are in my favor, and I prefer not to dwell on any other outcome.
And then 10 years doesn't seem so long. When you realize you are hoping to be alive for at least 40+ more years... the perspective suddenly shifts. Taking tamoxifen for the next 10 years is definitely less depressing than getting cancer again, or even worse, not being here to take it.
Friday, May 29, 2015
Wednesday, May 27, 2015
Radiation Continues (12 of 33)
I'm already in my third week of radiation. Today marked one dozen treatments completed... only 21 to go! So far I haven't had much for side effects. My skin might be a little bit more pink on the right side, but it's not very noticeable. I've been putting on lotion anytime I have bare skin at home (basically when I'm changing clothes that means). Tomorrow I will see Dr. Kuhn for my weekly visit with her. This is the cabinet of gowns that I have to put on for radiation each morning. I wear the teal ones.
This is the hallway that takes you to the radiation room. You can't see the bright orange tape very well... I guess it's the threshold to the danger area!
My port incision seems to be healed. The steri-strips haven't fallen off yet so I can't see what my scar will look like yet. I'm supposed to just let them fall off... if they are still hanging tight next week I might have to help them a bit.
My port incision seems to be healed. The steri-strips haven't fallen off yet so I can't see what my scar will look like yet. I'm supposed to just let them fall off... if they are still hanging tight next week I might have to help them a bit.
Tuesday, May 19, 2015
Port Removal: Complete
On Friday (May 15) I had my port removed. I don't regret having it during chemo, but I was not sad to see it go. It was almost 3 months to the day from when I had it implanted. Once it was all healed in there, the worst part was my seat belt would rub against it when I was driving. Also, it just felt kind of creepy when my hand would brush over it.
I got to see Dr. Livingston one more time as she was the one to remove it. I did not have to be put under anesthesia or any type of sedation, but it was performed in an operating room down at St. Luke's. Beth accompanied me for one more surgery. I had to check in at 7:30 am; the procedure was scheduled for 9 am and would take about 30 minute. I checked in at the hospital just like my other surgeries and had to do most of the same pre-op stuff. I didn't have to get an IV or talk to an anesthesiologist at all, and I didn't have to have those plastic things on my legs. And I could leave my contacts in. I did have to wear a hospital gown (and nothing else) and they monitored my vital signs and all that. Dr. Livingston popped by to say hello while I was still in the pre-op and shortly after that they wheeled me back to the OR. (I'm hoping these will be the last pictures of me in a hospital gown in the pre-op for a LONG time!)
This ride was a little different because I was completely aware and hadn't had any "relaxing" medicine like the other times. I chatted with the nurses and learned there are 17 operating rooms in the basement at St. Luke's. There are four more on another floor for open heart surgery and I think three on the labor and delivery floor... just in case you wondered about that. The OR doors are interesting. They are metal with frosted glass (or plexi?) and the slide open with about three panels on each side. I was in one of the very back operating rooms so got to see lots of doors. Finally we arrived at my room. They keep the OR nice and chilly. I was told the reason is because once all the lights are on and when everyone has on the proper gowns, masks, gloves, etc. you can get pretty warm. Also there is some thought it helps with the sterility.
They had me scoot onto the operating table and then piled probably at least four heated blankets on me. It felt really good because it was cold! I had already been warned they would have to restrain me, but that it was just for safety reasons. I was picturing restraints like you see on crazy people in the movies but it wasn't like that. There was a strap over my thighs and then for my arms there was a purple sheet under me than hung down on each side. They wrapped the ends around each arm and tucked them in some special way. They said they didn't want me to try and help with the surgery... or try to scratch an itch or something like that. I asked if they do this when the patient is asleep... yes they do.
I think a couple of the nurses in the room must have been newer, or maybe it was just their first time where the patient was not under anesthesia, because there was one nurse who was explaining a lot of things to them. Also she was saying things like, "Now, when the patient it awake like this it's good to make sure and talk to them and explain all the things you are doing and sounds they are hearing. The doors are loud, the table is loud, and so on." Of course I had to pipe in and say that yes, for me at least, I am less nervous when I know what to expect.
They hooked me up to a heart monitor and I had a blood pressure cuff and that finger/oxygen thing on my finger. One of the nurses then warned me she was going to put this "grounding" pad on my leg and it would be cold really cold. I asked, "Ground, like for electricity?" and she said yes, it was just in case they needed to cauterize anything. She wasn't kidding about it being cold! But once it was on I didn't notice it.
I'd heard Dr. Livingston used to perform this procedure in her office. She said she did, but it was so much easier to just do it at the hospital because all the supplies were there and also it was easier to ensure a sterile environment. She said there are some patients who opt to be put under anesthesia, but it's really not necessary. When the nurse had called me to schedule the procedure I was a little nervous to think I'd be awake while being sliced into, but she assured me it would be fine. I didn't want to have to be under anesthesia if I didn't have to and felt I could handle it. There at the hospital I didn't ever feel too nervous. It was nice to not have to put my body through anesthesia sedation.
A nurse cleansed the surgical site with iodine. It was cold and drippy. The next step was to place all of the drapes. So I couldn't actually see anyone or anything because I was under this blue drape. The part that went over my head was clipped to some poles on either side to keep it off of my face and there was one nurse whose job was basically to keep the fabric/paper off my face with her hand and to help me if I had an itch on my nose or anything like that. She also reminded me to not forget to breath. From what I could hear, the only thing left exposed was a triangular shape around the port which was near my collar bone. I asked what the port looked like and they said they could save it and show me when the procedure was completed.
Dr. Livingston said she was ready to go and the first thing she would do was she would numb the area with a local anesthetic. There was a slight pinch and sting when she started, but it didn't take long before I couldn't feel anything. I have no idea when she actually made the incision. It was kind of crazy because while she was working we chatted... she asked if I had plans for the weekend and the summer. At one point, she asked a nurse what happened to the music? There was kind of elevator music that had been playing. Just then it came back on. I said how I never thought about them playing music in the OR. She said oh yes, and some doctors play some pretty heavy rock and roll but she just likes something relaxing and how the background noise is nice.
She explained that the first thing she was doing was removing some sutures that had been holding the port in place. I didn't realize it was stitched in there, but she said they do that so that it can't flip over and then the nurses would be unable to access the actual port. I could sort of feel a little pulling or pressure but nothing painful. I'm not sure when she actually pulled the whole thing out. The next "feeling" was this really weird sensation that I don't know how to describe. It was weird. A few moments later she said that my port was officially out. I was so happy to hear that. A tear slipped onto my cheek. Dr. Livingston stitched the incision with dissolvable sutures, then a couple steri-strips followed by a dressing with tegaderm over it so I can shower and not worry about it getting wet. I'm supposed to leave the dressing on and not do any heavy lifting for five days.
A few minutes later I was all closed up and they took the drapes down. I was so glad because at this point, with the warm blankets and a couple hot flashes I was burning up. Now the coolness of the OR felt great! I thanked Dr. Livingston again for everything and she wished me well. A couple nurses came in to get me moved to the post-anesthesia care unit (PACU - I know what it's called because that is where my sister-in-law Sarah works, but not on Fridays of course). They were all prepared with a board to move me from the operating table to a bed and we quite surprised to find a patient that was wide awake... so I was able to move myself onto the bed.
They wheeled me back to the PACU where it took longer to complete the paperwork then for me to be ready to go home. I had a soda while I waited. It probably took about 15-20 minutes and then I was released to go. I didn't even have to ride in a wheelchair and was able to walk out on my own. Beth and I went to grab an early lunch and then she went with me to my radiation appointment. It was like a field trip... she got to see how they position me and all the machines and go in the control room with them when they administer the radiation.
Back at home I got Bryce down for a nap and then I took a nap myself. My incision site has been a little tender but not bad. I've taken some ibuprofen off and on and iced it a few times. A couple more days and I can take the bandage off. A few... ok 6... more weeks of radiation and I'll be done with that, too!
I got to see Dr. Livingston one more time as she was the one to remove it. I did not have to be put under anesthesia or any type of sedation, but it was performed in an operating room down at St. Luke's. Beth accompanied me for one more surgery. I had to check in at 7:30 am; the procedure was scheduled for 9 am and would take about 30 minute. I checked in at the hospital just like my other surgeries and had to do most of the same pre-op stuff. I didn't have to get an IV or talk to an anesthesiologist at all, and I didn't have to have those plastic things on my legs. And I could leave my contacts in. I did have to wear a hospital gown (and nothing else) and they monitored my vital signs and all that. Dr. Livingston popped by to say hello while I was still in the pre-op and shortly after that they wheeled me back to the OR. (I'm hoping these will be the last pictures of me in a hospital gown in the pre-op for a LONG time!)
They had me scoot onto the operating table and then piled probably at least four heated blankets on me. It felt really good because it was cold! I had already been warned they would have to restrain me, but that it was just for safety reasons. I was picturing restraints like you see on crazy people in the movies but it wasn't like that. There was a strap over my thighs and then for my arms there was a purple sheet under me than hung down on each side. They wrapped the ends around each arm and tucked them in some special way. They said they didn't want me to try and help with the surgery... or try to scratch an itch or something like that. I asked if they do this when the patient is asleep... yes they do.
I think a couple of the nurses in the room must have been newer, or maybe it was just their first time where the patient was not under anesthesia, because there was one nurse who was explaining a lot of things to them. Also she was saying things like, "Now, when the patient it awake like this it's good to make sure and talk to them and explain all the things you are doing and sounds they are hearing. The doors are loud, the table is loud, and so on." Of course I had to pipe in and say that yes, for me at least, I am less nervous when I know what to expect.
They hooked me up to a heart monitor and I had a blood pressure cuff and that finger/oxygen thing on my finger. One of the nurses then warned me she was going to put this "grounding" pad on my leg and it would be cold really cold. I asked, "Ground, like for electricity?" and she said yes, it was just in case they needed to cauterize anything. She wasn't kidding about it being cold! But once it was on I didn't notice it.
I'd heard Dr. Livingston used to perform this procedure in her office. She said she did, but it was so much easier to just do it at the hospital because all the supplies were there and also it was easier to ensure a sterile environment. She said there are some patients who opt to be put under anesthesia, but it's really not necessary. When the nurse had called me to schedule the procedure I was a little nervous to think I'd be awake while being sliced into, but she assured me it would be fine. I didn't want to have to be under anesthesia if I didn't have to and felt I could handle it. There at the hospital I didn't ever feel too nervous. It was nice to not have to put my body through anesthesia sedation.
A nurse cleansed the surgical site with iodine. It was cold and drippy. The next step was to place all of the drapes. So I couldn't actually see anyone or anything because I was under this blue drape. The part that went over my head was clipped to some poles on either side to keep it off of my face and there was one nurse whose job was basically to keep the fabric/paper off my face with her hand and to help me if I had an itch on my nose or anything like that. She also reminded me to not forget to breath. From what I could hear, the only thing left exposed was a triangular shape around the port which was near my collar bone. I asked what the port looked like and they said they could save it and show me when the procedure was completed.
Dr. Livingston said she was ready to go and the first thing she would do was she would numb the area with a local anesthetic. There was a slight pinch and sting when she started, but it didn't take long before I couldn't feel anything. I have no idea when she actually made the incision. It was kind of crazy because while she was working we chatted... she asked if I had plans for the weekend and the summer. At one point, she asked a nurse what happened to the music? There was kind of elevator music that had been playing. Just then it came back on. I said how I never thought about them playing music in the OR. She said oh yes, and some doctors play some pretty heavy rock and roll but she just likes something relaxing and how the background noise is nice.
She explained that the first thing she was doing was removing some sutures that had been holding the port in place. I didn't realize it was stitched in there, but she said they do that so that it can't flip over and then the nurses would be unable to access the actual port. I could sort of feel a little pulling or pressure but nothing painful. I'm not sure when she actually pulled the whole thing out. The next "feeling" was this really weird sensation that I don't know how to describe. It was weird. A few moments later she said that my port was officially out. I was so happy to hear that. A tear slipped onto my cheek. Dr. Livingston stitched the incision with dissolvable sutures, then a couple steri-strips followed by a dressing with tegaderm over it so I can shower and not worry about it getting wet. I'm supposed to leave the dressing on and not do any heavy lifting for five days.
A few minutes later I was all closed up and they took the drapes down. I was so glad because at this point, with the warm blankets and a couple hot flashes I was burning up. Now the coolness of the OR felt great! I thanked Dr. Livingston again for everything and she wished me well. A couple nurses came in to get me moved to the post-anesthesia care unit (PACU - I know what it's called because that is where my sister-in-law Sarah works, but not on Fridays of course). They were all prepared with a board to move me from the operating table to a bed and we quite surprised to find a patient that was wide awake... so I was able to move myself onto the bed.
They wheeled me back to the PACU where it took longer to complete the paperwork then for me to be ready to go home. I had a soda while I waited. It probably took about 15-20 minutes and then I was released to go. I didn't even have to ride in a wheelchair and was able to walk out on my own. Beth and I went to grab an early lunch and then she went with me to my radiation appointment. It was like a field trip... she got to see how they position me and all the machines and go in the control room with them when they administer the radiation.
Back at home I got Bryce down for a nap and then I took a nap myself. My incision site has been a little tender but not bad. I've taken some ibuprofen off and on and iced it a few times. A couple more days and I can take the bandage off. A few... ok 6... more weeks of radiation and I'll be done with that, too!
Sunday, May 17, 2015
Conversations at Radiation
As I was leaving after my radiation appointment the other day the woman just arriving complimented me on my hat (the pink one with all the ruching I bought at the very beginning). I remember seeing her at chemo a few times back when she was wearing hats. I thanked her and complimented her on her cute hair. It's shorter than when I had my short cut, but she has HAIR!
I asked when she finished her chemo. She finished almost exactly a month before I finished. She said it was weird and that it just seemed like all of a sudden one day she had a thick stubble of hair on her head. She said it was blonde before and now it silver and curly, but that she's liking it short and she's not going to dye it. I'm think she's a bit older than I am but still afraid mine might all grown back silver, too. Hers looks really cute, but I think if mine is silver (doesn't silver sound nicer than gray, by the way?) I will have to dye it at least for a few years! I think I need to at least be in my 40's before I have completely gray hair. She said she had lost most of her eyebrows and lashes as well, but they were coming back too. So there is hope for me! Her advice was be patient, give it a couple weeks and I'll probably notice it growing back.
Maybe in a few more weeks I'll be able to tell my hair is all growing again. The minimal hairs left on my head are growing, but there just aren't that many of them. They feel kind of icky when they get longer so I've shaved them shorter a few times... I might keep doing that until it all starts growing in. It might be weird if I have some hairs already growing that are longer than the others. I helped shave some of Juan's head this morning and was reminded how thin mine really is... it feels like there is more when I touch it with my hands. But after shaving his with the clippers, I was reminded it doesn't feel (or look) anything like a normal person. Even though I'm pretty used to my bald head, I was looking back at some pictures from when I still had my normal hair and I think I look better with at least some hair. Let's reminisce:
Hair in the fall before cancer came to town (note, Juan still bald):
Pre-chemo hair cut (I've had so many people say I looked good with short hair and even had quite a few people tell me when my hair comes back I should keep it short. I liked it short, too. I know everyone means it as a compliment and that is how I take it, but it does make me wonder if I decide to grow my hair longer will people be thinking, "Too bad she grew her hair out... it was so cute short." I don't know what I'll do with it at this point when it comes back. I'll just be happy to have it again!):
My shaved head before most of the hair fell out (oh my gosh, it looks so thick!):
The cute wig I never wear/wore (I think about wearing it. I put it on sometimes. I like how it looks. I don't like how it feels and at this point it feels weird to suddenly have hair so I end up taking it off.):
The way I've spent much of the last few months... wearing a hat:
At this point it's probably 50-50... I wear a hat 50% of the time and nothing the other 50% (body temperature has a lot to do with which one!):
I asked when she finished her chemo. She finished almost exactly a month before I finished. She said it was weird and that it just seemed like all of a sudden one day she had a thick stubble of hair on her head. She said it was blonde before and now it silver and curly, but that she's liking it short and she's not going to dye it. I'm think she's a bit older than I am but still afraid mine might all grown back silver, too. Hers looks really cute, but I think if mine is silver (doesn't silver sound nicer than gray, by the way?) I will have to dye it at least for a few years! I think I need to at least be in my 40's before I have completely gray hair. She said she had lost most of her eyebrows and lashes as well, but they were coming back too. So there is hope for me! Her advice was be patient, give it a couple weeks and I'll probably notice it growing back.
Maybe in a few more weeks I'll be able to tell my hair is all growing again. The minimal hairs left on my head are growing, but there just aren't that many of them. They feel kind of icky when they get longer so I've shaved them shorter a few times... I might keep doing that until it all starts growing in. It might be weird if I have some hairs already growing that are longer than the others. I helped shave some of Juan's head this morning and was reminded how thin mine really is... it feels like there is more when I touch it with my hands. But after shaving his with the clippers, I was reminded it doesn't feel (or look) anything like a normal person. Even though I'm pretty used to my bald head, I was looking back at some pictures from when I still had my normal hair and I think I look better with at least some hair. Let's reminisce:
Hair in the fall before cancer came to town (note, Juan still bald):
My shaved head before most of the hair fell out (oh my gosh, it looks so thick!):
The cute wig I never wear/wore (I think about wearing it. I put it on sometimes. I like how it looks. I don't like how it feels and at this point it feels weird to suddenly have hair so I end up taking it off.):
The way I've spent much of the last few months... wearing a hat:
At this point it's probably 50-50... I wear a hat 50% of the time and nothing the other 50% (body temperature has a lot to do with which one!):
Tuesday, May 12, 2015
Radiation: 2 down, 31 to go
I started radiation yesterday. If I don't miss any of my treatments (33 of them) I should finish up on June 25. It's kind of crazy to think I'll be doing this every day (except weekends) from now until then.
At my first appointment they took some additional "pictures" - both x-rays and actual photographs... of my boob... Awkward? A little. Now I know what the radiation room and machine looks like.
Here's the process... check in, then walk myself back to the radiation waiting area and changing room (yesterday I had someone show me the way so I wouldn't get lost). Change into a gown - top only, I get to leave my pants and shoes on. Put clothes and purse into a locker and then move into the next waiting area. A radiation tech (not sure what they are actually called) calls my name and walks me back to the radiation room. On the way you cross some semi-ominous looking bright orange tape on the floor. Also note that it has a door that is at least 12 inches thick... I assume they close it while they actually administer the radiation.
On my first day, Jerry, the tech, showed me "the control room" as I called it, which is where they are while I'm in the other room being radiated. It had lots of computers and he showed me the "pictures" they took during my simulation.
Then we went into the radiation room. The first thing I'm supposed to do each day is look at a computer screen to verify that my name and picture are on the screen. It's a picture from back when I had hair... long hair! But it's still me I suppose. Next I have to take my gown off and just hold it over my chest while I lay down on a table/platform that is covered with a sheet. It has a head rest and handle bar thing behind that to hold onto with your hands. One of the techs (it takes two) puts a foam support thing under my knees and another thing around my feet so that I don't accidentally cross my legs.
The next instructions are for me to lay completely still, relaxed, and to let my body be "heavy" while the techs adjust the sheet to get my body in the exactly perfect position. This is where my tattoos and those lasers (they are green lasers) come into play. The techs are one on each side of me and pull the sheet to get my body just right. I'm not supposed to "help" them... just lay there heavy and let them do the adjusting. It doesn't take long. Then they use the computer to set up the machine. They say numbers (like "drop to 96") that I suppose are like coordinates or something and correlate to how the machine needs to be positioned to aim the radiation at the correct spot. The table I am on moves up and down and also swivels. The radiation machine is like a big arm thing that rotates around the table so that it can aim at any spot. Once everything is exactly right the techs go into the control center and I just have to lay there completely still.
At my first appointment they had to do some other things once I was in position but before the radiation. They drew what reminded me of photo corners around my treatment area (that would be my breast) with a green marker. Then they took some x-ray pictures with the same machine that does the radiation. Then at the very end they took a few digital photographs. This is one of my photo corners... the other top one was actually on my back, right under my arm and the other two were down below.
The actual radiation pretty weird because you can't see anything. You can't feel anything. But you know something is happening. The only thing is the machine makes kind of a buzzing noise. Then after a couple buzzes it rotates 180 degrees (I think... I can't really tell for sure because as I mentioned, I'm not allowed to move). Then it buzzes a couple more times. Then the techs come back and I'm all done.
Once a week I will meet with Dr. Kuhn after my treatment. On those days (and the first day was one of them) I am supposed to just leave my gown on, grab my things from the locker, and wait in the first radiation waiting room for a nurse to come get me. At this appointment she gave me some gel that I can put on but said that "Udderly Smooth" lotion which you can buy in any regular store actually works better. I'm supposed to slather it on the entire treatment area (inside those photo corners) every day. Maybe more than once? I can't remember and didn't take any notes. She said I probably won't notice anything for at least a couple weeks. Eventually the skin may be more pink and you can have side effects like when you get a sunburn. Hopefully if I can remember to put the lotion or gel on it won't get to uncomfortable.
The rest of the days I just pop in for the radiation treatment and then on with my day. Today they did take a couple more pictures but I think I was in and out in a little less than 30 minutes. In the waiting area there was a woman who was there for her final treatment... I'm probably taking over her time slot is my guess. There was another woman who was also there for her second treatment just like me so we'll probably see each other again. She said she lives in Oregon and so she is staying with a friend in Star while she does her radiation. I'm very thankful we live so close MSTI... it makes it a lot easier that way!
This is my calendar for the next 7 weeks:
Here is some other exciting news, this Friday (May 15) I am going to have my port removed! I will not really miss it. I am glad I had it because it made the infusions really simple (although maybe I wouldn't have had any problems with IV... guess I'll never know). This time Dr. Livingston will get to see me with no hair. She's seen me with my long hair, my short cut, and now this.
The procedure will be in the hospital at St. Luke's downtown but I don't have to be put under anesthesia. Apparently they do it in the operating room, but they can just use a local anesthetic to numb the area. She will make a small incision and remove the port and then use dissolvable sutures to close it up. It's a lot easier to remove the port than to put it in because they don't have to get it positioned just so and get the tube into the vein... she just has to pull it out. Vicki (her nurse) said some people do elect to have full anesthesia but it's not necessary. It's a little unnerving to think about being sliced into, but I'm sure I can handle it and seems much better to not put your body through the whole anesthesia thing if you don't have to. I figure if I'm feeling really nervous they can give me something to help me "relax" if absolutely necessary since I'll be in the hospital. I have to check in at 7:30 am and the procedure is scheduled for 9 am and supposed to take about 30 minutes. Vicki said I could drive myself and would be fine to go to work after the procedure but it seems like you should get to take the day off for something like this and so I am going to do that.
They were able to move my radiation appointment to 11:30 am on that day so I don't have to miss a treatment day. I'm glad to have this next phase in progress now. It almost feels like it's going to take longer than chemo did... 33 treatments where chemo was only 4 treatments but it will actually take about half as long. Maybe by the time I get to number 33 I'll have a little more hair on my head!
At my first appointment they took some additional "pictures" - both x-rays and actual photographs... of my boob... Awkward? A little. Now I know what the radiation room and machine looks like.
Here's the process... check in, then walk myself back to the radiation waiting area and changing room (yesterday I had someone show me the way so I wouldn't get lost). Change into a gown - top only, I get to leave my pants and shoes on. Put clothes and purse into a locker and then move into the next waiting area. A radiation tech (not sure what they are actually called) calls my name and walks me back to the radiation room. On the way you cross some semi-ominous looking bright orange tape on the floor. Also note that it has a door that is at least 12 inches thick... I assume they close it while they actually administer the radiation.
On my first day, Jerry, the tech, showed me "the control room" as I called it, which is where they are while I'm in the other room being radiated. It had lots of computers and he showed me the "pictures" they took during my simulation.
Then we went into the radiation room. The first thing I'm supposed to do each day is look at a computer screen to verify that my name and picture are on the screen. It's a picture from back when I had hair... long hair! But it's still me I suppose. Next I have to take my gown off and just hold it over my chest while I lay down on a table/platform that is covered with a sheet. It has a head rest and handle bar thing behind that to hold onto with your hands. One of the techs (it takes two) puts a foam support thing under my knees and another thing around my feet so that I don't accidentally cross my legs.
The next instructions are for me to lay completely still, relaxed, and to let my body be "heavy" while the techs adjust the sheet to get my body in the exactly perfect position. This is where my tattoos and those lasers (they are green lasers) come into play. The techs are one on each side of me and pull the sheet to get my body just right. I'm not supposed to "help" them... just lay there heavy and let them do the adjusting. It doesn't take long. Then they use the computer to set up the machine. They say numbers (like "drop to 96") that I suppose are like coordinates or something and correlate to how the machine needs to be positioned to aim the radiation at the correct spot. The table I am on moves up and down and also swivels. The radiation machine is like a big arm thing that rotates around the table so that it can aim at any spot. Once everything is exactly right the techs go into the control center and I just have to lay there completely still.
At my first appointment they had to do some other things once I was in position but before the radiation. They drew what reminded me of photo corners around my treatment area (that would be my breast) with a green marker. Then they took some x-ray pictures with the same machine that does the radiation. Then at the very end they took a few digital photographs. This is one of my photo corners... the other top one was actually on my back, right under my arm and the other two were down below.
The actual radiation pretty weird because you can't see anything. You can't feel anything. But you know something is happening. The only thing is the machine makes kind of a buzzing noise. Then after a couple buzzes it rotates 180 degrees (I think... I can't really tell for sure because as I mentioned, I'm not allowed to move). Then it buzzes a couple more times. Then the techs come back and I'm all done.
Once a week I will meet with Dr. Kuhn after my treatment. On those days (and the first day was one of them) I am supposed to just leave my gown on, grab my things from the locker, and wait in the first radiation waiting room for a nurse to come get me. At this appointment she gave me some gel that I can put on but said that "Udderly Smooth" lotion which you can buy in any regular store actually works better. I'm supposed to slather it on the entire treatment area (inside those photo corners) every day. Maybe more than once? I can't remember and didn't take any notes. She said I probably won't notice anything for at least a couple weeks. Eventually the skin may be more pink and you can have side effects like when you get a sunburn. Hopefully if I can remember to put the lotion or gel on it won't get to uncomfortable.
The rest of the days I just pop in for the radiation treatment and then on with my day. Today they did take a couple more pictures but I think I was in and out in a little less than 30 minutes. In the waiting area there was a woman who was there for her final treatment... I'm probably taking over her time slot is my guess. There was another woman who was also there for her second treatment just like me so we'll probably see each other again. She said she lives in Oregon and so she is staying with a friend in Star while she does her radiation. I'm very thankful we live so close MSTI... it makes it a lot easier that way!
This is my calendar for the next 7 weeks:
Here is some other exciting news, this Friday (May 15) I am going to have my port removed! I will not really miss it. I am glad I had it because it made the infusions really simple (although maybe I wouldn't have had any problems with IV... guess I'll never know). This time Dr. Livingston will get to see me with no hair. She's seen me with my long hair, my short cut, and now this.
The procedure will be in the hospital at St. Luke's downtown but I don't have to be put under anesthesia. Apparently they do it in the operating room, but they can just use a local anesthetic to numb the area. She will make a small incision and remove the port and then use dissolvable sutures to close it up. It's a lot easier to remove the port than to put it in because they don't have to get it positioned just so and get the tube into the vein... she just has to pull it out. Vicki (her nurse) said some people do elect to have full anesthesia but it's not necessary. It's a little unnerving to think about being sliced into, but I'm sure I can handle it and seems much better to not put your body through the whole anesthesia thing if you don't have to. I figure if I'm feeling really nervous they can give me something to help me "relax" if absolutely necessary since I'll be in the hospital. I have to check in at 7:30 am and the procedure is scheduled for 9 am and supposed to take about 30 minutes. Vicki said I could drive myself and would be fine to go to work after the procedure but it seems like you should get to take the day off for something like this and so I am going to do that.
They were able to move my radiation appointment to 11:30 am on that day so I don't have to miss a treatment day. I'm glad to have this next phase in progress now. It almost feels like it's going to take longer than chemo did... 33 treatments where chemo was only 4 treatments but it will actually take about half as long. Maybe by the time I get to number 33 I'll have a little more hair on my head!
Wednesday, May 6, 2015
A Collection of Conversations at the...
Conversations at Gymnastics Class
While I was at Claire's gymnastics class the other day, a woman asked if she could move an empty chair next to me. Yes, no one was sitting in it. Then she paused for a few seconds and asked, "I hope you don't mind if I ask, but are you going through treatment?" (I had my purple hat on.) I told her that yes, I was. She went on to tell me she had been through it too and how she just wanted to let me know that she knew what a difficult time this could be that things would get better and basically just offer encouragement and hope. We chatted for a bit about having no hair. She said hers did come back gray, but it was a lovely blonde color now thanks to her hairdresser. I asked if she took Tamoxifen but she said no, her cancer was triple negative (which means it was negative for the hormone receptors, thus Tamoxifen would have no benefit). Triple negative is more difficult to treat for this reason. She said she had been cancer-free (what they call no evidence of disease - NED) for seven years now and her oncologist said the chance of it returning was greatly diminished... that most recurrences happen within three years and she was well past that mark. I appreciated her taking the time to talk to me and share encouraging words.
Conversations in the Shoe Department
The day after my gymnastics encounter, I was looking for cute flat sandals that I could wear to work... anything that I can easily slip off and on but that aren't a flip-flop. As I browsed a woman, stopped to ask if I was going through chemo. She had been through it too a few years ago. Like the other woman she offered her empathy with my situation and an assurance that I would get through it.
Conversations in the Check-Out Line
I was checking out at Fred Meyer the other night when a couple got in line behind me. They were kind of an odd couple... the woman was very tall, quite loud and boisterous, and look pretty tough with strong arms and several tattoos. The man was short and not nearly as loud. I think they were talking about the senior citizen discount or something and the woman was going on about being so old and that she just couldn't believe she was 60, she never thought she'd live to be so old and she thought she'd be dead by now. As I heard that I kind of thought to myself it wasn't a very nice thing to say as you were standing next to cancer-girl in her little cap (although she probably hadn't even noticed). Then all of a sudden she started ripping off her sweater (that's when I saw her arms/tattoos) and making the man hold it. She grabbed a credit card application and started violently fanning herself and said something about once you hit 50 it's all downhill from there. I told her I could sympathize and that I get to have hot flashes, too. Overall it was an odd conversation but kind of entertaining, too.
Another Conversation at the Check-Out Counter
Perhaps I have been mistaken to assume all people typically assume "cancer" when they see a bald woman. I was at Macy's the other day to make an exchange and I was au-natural with my bald head/no hat. The woman in front of me was pretty chatty with the clerk, and then she said to me something along the lines of, "I hope you don't mind me asking but did you shave your head for chemo or just because you are bold. You look great." Turns out she was a former hairdresser and used to have several clients who had gone through chemo and yada-yada. I told her that I was not so bold, but had shaved it for chemo since it was all falling out.
And these are the kinds of weird conversations I get to have now (but not for too much longer!)... one day I will be on the other side of this and have hair again and when I see a woman who does not, will approach her and offer my encouragement? Or will it be too emotional an awkward for me to do that? I suppose it will just depend on the unique situation.
While I was at Claire's gymnastics class the other day, a woman asked if she could move an empty chair next to me. Yes, no one was sitting in it. Then she paused for a few seconds and asked, "I hope you don't mind if I ask, but are you going through treatment?" (I had my purple hat on.) I told her that yes, I was. She went on to tell me she had been through it too and how she just wanted to let me know that she knew what a difficult time this could be that things would get better and basically just offer encouragement and hope. We chatted for a bit about having no hair. She said hers did come back gray, but it was a lovely blonde color now thanks to her hairdresser. I asked if she took Tamoxifen but she said no, her cancer was triple negative (which means it was negative for the hormone receptors, thus Tamoxifen would have no benefit). Triple negative is more difficult to treat for this reason. She said she had been cancer-free (what they call no evidence of disease - NED) for seven years now and her oncologist said the chance of it returning was greatly diminished... that most recurrences happen within three years and she was well past that mark. I appreciated her taking the time to talk to me and share encouraging words.
Conversations in the Shoe Department
The day after my gymnastics encounter, I was looking for cute flat sandals that I could wear to work... anything that I can easily slip off and on but that aren't a flip-flop. As I browsed a woman, stopped to ask if I was going through chemo. She had been through it too a few years ago. Like the other woman she offered her empathy with my situation and an assurance that I would get through it.
Conversations in the Check-Out Line
I was checking out at Fred Meyer the other night when a couple got in line behind me. They were kind of an odd couple... the woman was very tall, quite loud and boisterous, and look pretty tough with strong arms and several tattoos. The man was short and not nearly as loud. I think they were talking about the senior citizen discount or something and the woman was going on about being so old and that she just couldn't believe she was 60, she never thought she'd live to be so old and she thought she'd be dead by now. As I heard that I kind of thought to myself it wasn't a very nice thing to say as you were standing next to cancer-girl in her little cap (although she probably hadn't even noticed). Then all of a sudden she started ripping off her sweater (that's when I saw her arms/tattoos) and making the man hold it. She grabbed a credit card application and started violently fanning herself and said something about once you hit 50 it's all downhill from there. I told her I could sympathize and that I get to have hot flashes, too. Overall it was an odd conversation but kind of entertaining, too.
Another Conversation at the Check-Out Counter
Perhaps I have been mistaken to assume all people typically assume "cancer" when they see a bald woman. I was at Macy's the other day to make an exchange and I was au-natural with my bald head/no hat. The woman in front of me was pretty chatty with the clerk, and then she said to me something along the lines of, "I hope you don't mind me asking but did you shave your head for chemo or just because you are bold. You look great." Turns out she was a former hairdresser and used to have several clients who had gone through chemo and yada-yada. I told her that I was not so bold, but had shaved it for chemo since it was all falling out.
And these are the kinds of weird conversations I get to have now (but not for too much longer!)... one day I will be on the other side of this and have hair again and when I see a woman who does not, will approach her and offer my encouragement? Or will it be too emotional an awkward for me to do that? I suppose it will just depend on the unique situation.
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