Just when I thought it couldn't get worse.....
I got through today in a rough state. I was having severe chest pain and some mild spine achiness. Dave has been texting to go get an echo-cardiogram, but I chalked the chest pain up to heartburn. On the drive home, my spine became more and more painful. By the time I got home (without the kids, hoping to nap for an hour before picking them up) I was in defcon1 pain. It felt like every single vertebrate in my back was broken. I got on the couch and my body was actually convulsing in pain - shooting through my spine like electricity. I knew that the neulasta injection on Friday would cause bone pain, but I hadn't had any until now. I texted Dave to distract me from calling 911 for myself. He researched and said that the pain was definitely from the Neulasta and that it was right on schedule - supposed to happen between days 5-7. It is day 6. Well, I'm not sure if I'm glad I didn't know this or not. The answer is Aleve and lots of it.
I called our babysitter and asked if she could come over to take care of the boys for the evening. I drove to daycare in agony to pick up the kids. I also asked for the "permission to pick up" form at day care and added EVERY single person's name to it because if I have another day like today, I cannot do it! If you are reading this, your name is probably on that list now. :)
After a couple of hours, the Aleve started to take hold. I'm very, very sore, but functioning again.
Dude, this chemo stuff ain't for sissies! I have a new respect for anyone who has been through it.
Thursday, March 30, 2017
Wednesday, March 29, 2017
Two Muffins
Bare with me. This is going to start off with a lot of whining and complaining. It gets better, I promise!
I have been suffering, in my opinion severely, since I had that first chemo treatment. Seriously, the list of complaints is crazy: nausea, exhaustion, heart pain, constipation, sore gut track, heartburn, anxiety, sensory overload, processing disorder, skin changes, and in general, I think I'm dying. Dave keeps checking in with text messages and offering to fly home. Each morning I get up at 6:00 (after a SOLID NINE HOURS of sleep!!), get myself ready, get the kids ready, take the kids to school, get myself to school.....and then by 8:00 I am slumped over my desk, shaking with exhaustion. It has been alarming, to say the least. I am finding stairs difficult at school. I am trying to park closer to my room. I go home at the end of the day and have nothing left. I have meals in the freezer that I am too exhausted to get out and defrost. I love, love, love food.....seriously......and lately all I can eat is pasta, bread, and crackers. Chemo destroys the lining of your gut track. Who knew? I am getting crushing pain in my chest, which my drama side says is heart failure, even though my tiny bit of sanity tells me it is anxiety. I've been a wreck! The other night I went to sleep thinking I'd be dead by the morning and stressed all night about the boys finding me DEAD! So, yesterday, I had to teach them how to use my cell phone to call 911. Finding your mom dead and having no way to get help seems like it would take a shit-ton of therapy to correct. At the very least, now they can access "YouTube Kids" on my phone to distract them from my cold body.
Today, I had a one week check-in with the oncologist. I had bloodwork done, too. First of all, I do love this doctor. She is so very kind and gets it. She let me list all my complaints and went through each one. My gut track issues are normal. She said I actually look good - no sores. I'm on Pepcid starting today. If I continue to have heart pain while on the Pepcid, I'm supposed to go to ER and have an echocardiogram right away. All the other stuff is super normal. She said she was surprised to hear me say that I would try to work through chemo. Maybe I said that, but I really was trying to get a handle on if it was possible. She, and others, have told me not to be a hero, and not to push through. The funny thing is that I couldn't even push through if I wanted to. My body is 100% in charge right now. She wants me to be kind to myself, rest, and let others do things for me. Sigh. It's just so HARD for me!!! She asked me if she could write a note to take me out of school. Ughhh! My brain was firing between yes and no so quickly! The good thing is that the superintendent had already told me not to have the doctor take me out of school. She said that I could take whatever days I need and that they would understand. She's retired, so I'm not sure if that still stands. I do think I would like to try some half days and see if it helps me function. I love my job. I love being at school. I love being busy. My body and brain are in a serious struggle. I asked her if things would get better once I'm off this A-C chemo and switch to T in 2 months. She hesitated and said, "It will all catch up to you. It may not feel any easier. In fact, this A-C is such a difficult regiment that maybe we talk about not doing the T and give you a break."
All in all, she says I look surprisingly better than most people a week after A-C treatment. She said everything I'm going through is normal. She says I'm probably not going to wake up dead in the morning. :) She said my white blood cell count is 3.3. It's low, but not too low. I'll have to do some reading on those numbers. Other blood lab results are coming in later today. If anything is out of line, she will call me right away. She asked if I had begun losing my hair. I haven't yet, but my skull has a continual light headache. She says it will happen around day 10. Three more days......
So, continue on, continuing on. Stay away from crowds and sick kids. Ha. Right. Don't touch door knobs, elevator buttons, and hand rails. Wash, wash, wash, and re-wash my hands. Don't get sick!
If you're still reading this after all that complaining, wow! You are a true friend! I don't want this to get too glum and lose my readership!!! So, I'll end with this joke:
Two muffins were sitting in the oven baking. One muffin turned to the other and said, "Hey, it's pretty hot in here, isn't it?" The other turned and shouted, "Holy shit! A talking muffin!!"
Sounds like I'll even make it a few more days......for more jokes! :)
I have been suffering, in my opinion severely, since I had that first chemo treatment. Seriously, the list of complaints is crazy: nausea, exhaustion, heart pain, constipation, sore gut track, heartburn, anxiety, sensory overload, processing disorder, skin changes, and in general, I think I'm dying. Dave keeps checking in with text messages and offering to fly home. Each morning I get up at 6:00 (after a SOLID NINE HOURS of sleep!!), get myself ready, get the kids ready, take the kids to school, get myself to school.....and then by 8:00 I am slumped over my desk, shaking with exhaustion. It has been alarming, to say the least. I am finding stairs difficult at school. I am trying to park closer to my room. I go home at the end of the day and have nothing left. I have meals in the freezer that I am too exhausted to get out and defrost. I love, love, love food.....seriously......and lately all I can eat is pasta, bread, and crackers. Chemo destroys the lining of your gut track. Who knew? I am getting crushing pain in my chest, which my drama side says is heart failure, even though my tiny bit of sanity tells me it is anxiety. I've been a wreck! The other night I went to sleep thinking I'd be dead by the morning and stressed all night about the boys finding me DEAD! So, yesterday, I had to teach them how to use my cell phone to call 911. Finding your mom dead and having no way to get help seems like it would take a shit-ton of therapy to correct. At the very least, now they can access "YouTube Kids" on my phone to distract them from my cold body.
Today, I had a one week check-in with the oncologist. I had bloodwork done, too. First of all, I do love this doctor. She is so very kind and gets it. She let me list all my complaints and went through each one. My gut track issues are normal. She said I actually look good - no sores. I'm on Pepcid starting today. If I continue to have heart pain while on the Pepcid, I'm supposed to go to ER and have an echocardiogram right away. All the other stuff is super normal. She said she was surprised to hear me say that I would try to work through chemo. Maybe I said that, but I really was trying to get a handle on if it was possible. She, and others, have told me not to be a hero, and not to push through. The funny thing is that I couldn't even push through if I wanted to. My body is 100% in charge right now. She wants me to be kind to myself, rest, and let others do things for me. Sigh. It's just so HARD for me!!! She asked me if she could write a note to take me out of school. Ughhh! My brain was firing between yes and no so quickly! The good thing is that the superintendent had already told me not to have the doctor take me out of school. She said that I could take whatever days I need and that they would understand. She's retired, so I'm not sure if that still stands. I do think I would like to try some half days and see if it helps me function. I love my job. I love being at school. I love being busy. My body and brain are in a serious struggle. I asked her if things would get better once I'm off this A-C chemo and switch to T in 2 months. She hesitated and said, "It will all catch up to you. It may not feel any easier. In fact, this A-C is such a difficult regiment that maybe we talk about not doing the T and give you a break."
All in all, she says I look surprisingly better than most people a week after A-C treatment. She said everything I'm going through is normal. She says I'm probably not going to wake up dead in the morning. :) She said my white blood cell count is 3.3. It's low, but not too low. I'll have to do some reading on those numbers. Other blood lab results are coming in later today. If anything is out of line, she will call me right away. She asked if I had begun losing my hair. I haven't yet, but my skull has a continual light headache. She says it will happen around day 10. Three more days......
So, continue on, continuing on. Stay away from crowds and sick kids. Ha. Right. Don't touch door knobs, elevator buttons, and hand rails. Wash, wash, wash, and re-wash my hands. Don't get sick!
If you're still reading this after all that complaining, wow! You are a true friend! I don't want this to get too glum and lose my readership!!! So, I'll end with this joke:
Two muffins were sitting in the oven baking. One muffin turned to the other and said, "Hey, it's pretty hot in here, isn't it?" The other turned and shouted, "Holy shit! A talking muffin!!"
Sounds like I'll even make it a few more days......for more jokes! :)
Friday, March 24, 2017
Neulasta Injection
Wow, that chemo day kicked my ass. I was not prepared for exhaustion and nausea to come so quickly and strongly. I was loaded up on three bags of anti-nausea prior to chemo, but three hours later, I was in agony holding a vomit bag for the rest of the night. I made it through the night and a full day at work on Thursday. Felt sick throughout that night. Had a half day of work planned for Friday, thankfully......I wouldn't have made it the whole day. I left at noon and had time to go home and sit for an hour - completely fell asleep! I never can nap like that. I went in for my Neulasta injection at 2:15. Then I went home and fell asleep until 8:00pm! Just waiting for the bone pain to start, since that's the major side effect of this drug. It helps recover white blood cells - so thus the bone pain, while my marrow gets working overtime. Sounds like it will get pretty brutal. Waiting. And while I'm waiting, I'm feeling nauseous again. This could be a long night. I am praying I rally by Monday. They estimate 5 days of hell following each chemo. They reminded me that I'm on a very tough regiment of chemo drugs. My blood pressure and pulse are high - perhaps due to the steroids I'm taking so I don't feel so sick.
The Neulasta injection can be done with an on-body patch that gets placed the day of chemo. It inserts a needle into your arm and then gives you a dose 24 hours later. I was thinking I would do that, but now that I have seen one, I don't know if I want to wear that to school. It will be very obvious and kids will ask about it. It's a somewhat large box that gets stuck to the back of your arm. And when it's giving you the meds, you need someone near you to make sure it actually injected you by reading the monitor. Then it has to be removed and placed into a sharps container. Might be too much for the work environment. And, after today, I'm wondering if I will need to do a half day on Fridays to recover/sleep before picking up the kids at the end of the day. So, maybe driving all the way to oncologist for the injection isn't a bad idea. I will talk to the doctor when I see her again on Wednesday.
Since the oncologist warned that things will get worse as I get deeper into my treatments, I'm starting to rethink how I'm going to get through the next 4-5 months. Hopefully things will seem brighter on Monday. I'm holding out for that.....
The Neulasta injection can be done with an on-body patch that gets placed the day of chemo. It inserts a needle into your arm and then gives you a dose 24 hours later. I was thinking I would do that, but now that I have seen one, I don't know if I want to wear that to school. It will be very obvious and kids will ask about it. It's a somewhat large box that gets stuck to the back of your arm. And when it's giving you the meds, you need someone near you to make sure it actually injected you by reading the monitor. Then it has to be removed and placed into a sharps container. Might be too much for the work environment. And, after today, I'm wondering if I will need to do a half day on Fridays to recover/sleep before picking up the kids at the end of the day. So, maybe driving all the way to oncologist for the injection isn't a bad idea. I will talk to the doctor when I see her again on Wednesday.
Since the oncologist warned that things will get worse as I get deeper into my treatments, I'm starting to rethink how I'm going to get through the next 4-5 months. Hopefully things will seem brighter on Monday. I'm holding out for that.....
Wednesday, March 22, 2017
Chemo #1
Whew - holy shit, I have been a nervous wreck all day worrying about this first appointment!! We met with the oncologist to hear about and sign a waiver stating that I know all the bad stuff that can happen to me for using chemo drugs. I asked her opinion of me working through chemo. She hesitated (that was my answer!) and said slowly, "Yes, you can work and many people do. However, there will eventually come a point where you are going to need to stop and rest. You are going to get exhausted and it will get worse and worse as you go along with the treatment." So, now there's that to worry about. Then, we met with the chemo nurse for about an hour to go over everything from nausea control to identifying dangerous symptoms to using reiki for well-being. She was very thorough! My hands were sweating like crazy in anticipation.
Accessing the port was a little less horrible than I thought it would be. There is definitely pressure, but no pain. Then, I got 3 separate bags of anti-nausea meds and steroids as my "pre-medication". Today's major drug was the Adrianmycin, which is the one that can cause heart failure and leukemia. It also will cause my hair to fall out in 10-14 days. So, I marked that on my calendar. I wouldn't want to accidentally miss that fun day! This wonderful, crappy drug is bright red and causes me to pee bright red. That was startling. She had to push that med in with a syringe. My port kept getting clogged or some weird suction thing was happening. She explained it to me in detail, but I completely didn't let any of her words into my brain because it was freaking me out. I hope Dave can re-explain it to me later. So, to unclog my port I had to keep turning and coughing really hard. Then I would feel a crazy rush into my heart. I did not like that feeling. The last bag of meds is one of the other chemo drugs. All in all, the whole cocktail took about 2 hours total. Not long at all.
Oh, and I don't want to forget this little gem: Apparently my bodily fluids are now so toxic, that I should flush the toilet twice and if I get any of my bodily fluids on my clothes, I should launder them separately! I will try not to pee my pants. Cleaning up vomit may take a haz-mat team.
They told me that the Adrianmycin has the tendency to make people very sick and vomit. They heavily medicated me with anti-nausea drugs. I was able to eat dinner and give the boys a bath, but I am going to be honest, I feel intense sickness creeping up. They told me to take all the extra nausea meds as soon as I have this feeling. I think I need to do it. They warned that if I wait until I'm puking, it will take too long for the meds to kick in.
And, the steroids are supposed to keep me awake and jittery all night. Cool. Maybe that's the real reason chemo patients are tired all the time.
Taking the anti-nausea meds now.....
Accessing the port was a little less horrible than I thought it would be. There is definitely pressure, but no pain. Then, I got 3 separate bags of anti-nausea meds and steroids as my "pre-medication". Today's major drug was the Adrianmycin, which is the one that can cause heart failure and leukemia. It also will cause my hair to fall out in 10-14 days. So, I marked that on my calendar. I wouldn't want to accidentally miss that fun day! This wonderful, crappy drug is bright red and causes me to pee bright red. That was startling. She had to push that med in with a syringe. My port kept getting clogged or some weird suction thing was happening. She explained it to me in detail, but I completely didn't let any of her words into my brain because it was freaking me out. I hope Dave can re-explain it to me later. So, to unclog my port I had to keep turning and coughing really hard. Then I would feel a crazy rush into my heart. I did not like that feeling. The last bag of meds is one of the other chemo drugs. All in all, the whole cocktail took about 2 hours total. Not long at all.
Oh, and I don't want to forget this little gem: Apparently my bodily fluids are now so toxic, that I should flush the toilet twice and if I get any of my bodily fluids on my clothes, I should launder them separately! I will try not to pee my pants. Cleaning up vomit may take a haz-mat team.
They told me that the Adrianmycin has the tendency to make people very sick and vomit. They heavily medicated me with anti-nausea drugs. I was able to eat dinner and give the boys a bath, but I am going to be honest, I feel intense sickness creeping up. They told me to take all the extra nausea meds as soon as I have this feeling. I think I need to do it. They warned that if I wait until I'm puking, it will take too long for the meds to kick in.
And, the steroids are supposed to keep me awake and jittery all night. Cool. Maybe that's the real reason chemo patients are tired all the time.
Taking the anti-nausea meds now.....
Tuesday, March 21, 2017
I'm not crying, YOU'RE crying!
The looming chemo is really taking a toll on me. I'm more afraid of the chemo than I was about the mastectomy. I knew exactly what to expect with the mastectomy. I have no idea how I'll handle the chemo. I don't like unplanned stuff.....surprises. Will I be able to work and take care of the kids when I'm going through this? Everyone has different opinions. I'm so freaked out about that. I'm so freaked out about losing my hair. I've been miserable to be around - just ask Dave.
I got a package in the mail yesterday from a dear friend in Pennsylvania. I opened it up to find a care package of mints, body lotion, lip balm, and hand sanitizer - along with other goodies. It made me tear up. Who tears up about hand sanitizer???? People have been so good to me throughout this whole thing and it still continues.
I still haven't had a cry about this whole thing and I probably should. I'm sure I'll get around to it pretty soon. It needs to happen or I'm going to explode.
I got three books about cancer and chemo for the boys. We were reading them one afternoon this weekend and James' eyes starting shutting. Then he said he was going to throw up. We went into the bathroom and I held his head over the toilet for a bit. After about 5 minutes, he was fine and ready to run around. I think the books were too much for him all at one time. We revisited them later.
I saw the cardiologist yesterday. Turns out that I DO have a heart, contrary to popular belief. He took a million ultrasounds. The ultrasound wand hurt, since my heart is under my left breast. He says they take this baseline because my first round of drugs could send my heart into heart failure - whatever that means - but it doesn't sound very fun. The chance is very low. I was watching the ultrasound as he did it. He got all excited and said, "Do you see that wire inside your heart?!" Ewwww, God, no, what???? "That's your port!!" I had no idea that my port dumps right into my heart chamber.
Speaking of the port, it's been more painful than I thought it would be. I absolutely hate the feel of something foreign in my chest and the bump that is visible. It hurts when the kids hug me. It hurts to lift my arm and sleep on my side. I still haven't taken the bandage off. I don't want to see it. I have no choice tomorrow. Before I leave work, I'm going to have to take the bandage off and apply my numbing cream for my appointment at 1:00. I dread doing that. I also need to race like hell out of school to get home to change into comfy clothes (recommended, and needed for port access) and pick up Dave.
I don't want to do this....I don't want to do this......I don't want to do this......
I have a couple of friends who have been through chemo. One says to not think of this as poison, but to think of it as Pac-Man eating up the bad cancer cells. Another says to think of this as a major battle and that we're sending in the drone strikes. The doctor says it's not going to be pleasant but I'm going to make it through.
I will.....I don't have any other choices.
I got a package in the mail yesterday from a dear friend in Pennsylvania. I opened it up to find a care package of mints, body lotion, lip balm, and hand sanitizer - along with other goodies. It made me tear up. Who tears up about hand sanitizer???? People have been so good to me throughout this whole thing and it still continues.
I still haven't had a cry about this whole thing and I probably should. I'm sure I'll get around to it pretty soon. It needs to happen or I'm going to explode.
I got three books about cancer and chemo for the boys. We were reading them one afternoon this weekend and James' eyes starting shutting. Then he said he was going to throw up. We went into the bathroom and I held his head over the toilet for a bit. After about 5 minutes, he was fine and ready to run around. I think the books were too much for him all at one time. We revisited them later.
I saw the cardiologist yesterday. Turns out that I DO have a heart, contrary to popular belief. He took a million ultrasounds. The ultrasound wand hurt, since my heart is under my left breast. He says they take this baseline because my first round of drugs could send my heart into heart failure - whatever that means - but it doesn't sound very fun. The chance is very low. I was watching the ultrasound as he did it. He got all excited and said, "Do you see that wire inside your heart?!" Ewwww, God, no, what???? "That's your port!!" I had no idea that my port dumps right into my heart chamber.
Speaking of the port, it's been more painful than I thought it would be. I absolutely hate the feel of something foreign in my chest and the bump that is visible. It hurts when the kids hug me. It hurts to lift my arm and sleep on my side. I still haven't taken the bandage off. I don't want to see it. I have no choice tomorrow. Before I leave work, I'm going to have to take the bandage off and apply my numbing cream for my appointment at 1:00. I dread doing that. I also need to race like hell out of school to get home to change into comfy clothes (recommended, and needed for port access) and pick up Dave.
I don't want to do this....I don't want to do this......I don't want to do this......
I have a couple of friends who have been through chemo. One says to not think of this as poison, but to think of it as Pac-Man eating up the bad cancer cells. Another says to think of this as a major battle and that we're sending in the drone strikes. The doctor says it's not going to be pleasant but I'm going to make it through.
I will.....I don't have any other choices.
Friday, March 17, 2017
Hardware installed
Dave got home at 2am Friday morning and we left for the hospital at 6am. The surgery took just under 1.5 hours and I woke up right in the operating room feeling pretty great. I was in recovery for a half hour and then we went out to breakfast! I have all the manuals for my "power port". I was pain -free for the first two hours and now the pain is seeping into my chest and down my arm. I'm back to not being able to exercise (not a problem!) and not being able to lift anything heavier than a gallon of milk (a big problem!) for 4-5 weeks.
Of course, today is the perfect snow for making a snowman.....and due to my crappy health throughout the whole winter, I have not been able to do it with the boys. I'm laying down now and hopefully I have enough strength and no pain to do it with them this afternoon. Tomorrow is supposed to be a sledding day with the cousins.....but I think I'll be the photographer and beg my brother to do all the work/play with the kids. I hate missing this stuff.
Dave is having high anxiety about his mother's surgery and also insists on being present for my first chemo. They are scheduled for the same time. I WANT him to be with his mom. He wants me to change my appointment. I don't want to and I'm perfectly fine going to this appointment with a friend. He put huge guilt on me that if I don't change the appointment that he will be forced to go to my appointment and not his mother's surgery. I'm about ready to strangle him with this extra stress. So, I was forced to chance my appointment and I'm not speaking to him right now.....other than swearing. :/ I don't get why he has to make this so difficult. My chemo appointment is not a big deal. His mom's surgery is. Rrrrrrrrr.
Oh, and an interesting discovery on the oncotype testing. The protocol is to just test the largest tumor to determine the need for chemo. Dave researched and insisted on testing all five. The doctors all rolled their eyes and said they will all be the same. Turns out that they weren't all the same. And, the score on my largest tumor was not the largest oncotype score. Therefore, if they were just going by the testing of this largest tumor, I would NOT be a candidate for chemo. Scary stuff there.
Of course, today is the perfect snow for making a snowman.....and due to my crappy health throughout the whole winter, I have not been able to do it with the boys. I'm laying down now and hopefully I have enough strength and no pain to do it with them this afternoon. Tomorrow is supposed to be a sledding day with the cousins.....but I think I'll be the photographer and beg my brother to do all the work/play with the kids. I hate missing this stuff.
Dave is having high anxiety about his mother's surgery and also insists on being present for my first chemo. They are scheduled for the same time. I WANT him to be with his mom. He wants me to change my appointment. I don't want to and I'm perfectly fine going to this appointment with a friend. He put huge guilt on me that if I don't change the appointment that he will be forced to go to my appointment and not his mother's surgery. I'm about ready to strangle him with this extra stress. So, I was forced to chance my appointment and I'm not speaking to him right now.....other than swearing. :/ I don't get why he has to make this so difficult. My chemo appointment is not a big deal. His mom's surgery is. Rrrrrrrrr.
Oh, and an interesting discovery on the oncotype testing. The protocol is to just test the largest tumor to determine the need for chemo. Dave researched and insisted on testing all five. The doctors all rolled their eyes and said they will all be the same. Turns out that they weren't all the same. And, the score on my largest tumor was not the largest oncotype score. Therefore, if they were just going by the testing of this largest tumor, I would NOT be a candidate for chemo. Scary stuff there.
Wednesday, March 15, 2017
Chemo port surgery
I do have to have a chemo port put in my chest. Surgery is scheduled for Friday morning. Dave left Monday and wasn't able to make it home yesterday/today because of the blizzard that we got. He is now due back at 1am on Friday morning. If his flight is delayed, I'm driving myself to surgery and he will just have to retrieve me when he gets in. I spoke to a friend who also has a port. I've been thinking this is a quick and painless procedure. She told me she was very sore afterwards and to ask for pain drugs before I go home.
I was supposed to go in to the oncologist today to get height/weight taken so they know the drug dose. I couldn't make it because they were closed due to the storm. Therefore, I have to race out of school tomorrow to try to get there before they close at 4:30. I also have to pick up my anti-nausea and numbing cream at the pharmacist.
On Monday I have to have the echocardiogram because these chemo drugs can be heart damaging. They need a baseline on my heart.
On Wednesday, I am starting chemo. Dave's mom is scheduled for surgery the same day, so I have to ask if I can do this solo. If they won't allow me to, I have a friend on back-up. It's supposed to take about 2 1/2 hours.
On Friday, I have to go back for an injection of Neulasta. That's an injection that I will have to get 2 days after each chemo dose. It will help me rebuild white blood cells.
I'm bummed with the amount of days I have to take off of work for this week. I'm stressed out of my mind about losing my hair. I have another friend who is willing to be on-call to buzz my hair off when it starts falling out.
I have three children's books about cancer and chemo and hair loss to start discussing this with the boys.
I ordered my head scarves and vomit bags.
Stress is really ramping up right now......hoping that in another month I will be in a level place again. One that I'm back in control of. Feeling very out of control right now.
I was supposed to go in to the oncologist today to get height/weight taken so they know the drug dose. I couldn't make it because they were closed due to the storm. Therefore, I have to race out of school tomorrow to try to get there before they close at 4:30. I also have to pick up my anti-nausea and numbing cream at the pharmacist.
On Monday I have to have the echocardiogram because these chemo drugs can be heart damaging. They need a baseline on my heart.
On Wednesday, I am starting chemo. Dave's mom is scheduled for surgery the same day, so I have to ask if I can do this solo. If they won't allow me to, I have a friend on back-up. It's supposed to take about 2 1/2 hours.
On Friday, I have to go back for an injection of Neulasta. That's an injection that I will have to get 2 days after each chemo dose. It will help me rebuild white blood cells.
I'm bummed with the amount of days I have to take off of work for this week. I'm stressed out of my mind about losing my hair. I have another friend who is willing to be on-call to buzz my hair off when it starts falling out.
I have three children's books about cancer and chemo and hair loss to start discussing this with the boys.
I ordered my head scarves and vomit bags.
Stress is really ramping up right now......hoping that in another month I will be in a level place again. One that I'm back in control of. Feeling very out of control right now.
Friday, March 10, 2017
Wig shopping
Since chemo is 100% definite, today was wig-shopping day. I had an appointment at 11am and was there almost 2 hours. The stylist was amazing and took all the time with us. There is definitely a shock that comes with putting on your first couple of wigs. Dave took pictures and it was easier to pick them while looking at photographs rather than real-life in the mirror. For the record, I find it easier to buy new glasses using this method too. I learned a LOT aobut wigs today, more than I ever thought I would have to know. Ended up buying three - a short/sassy, a medium that looks sort of like my own hair, and a long, fun one. Might wear the long one out to dinner tonight to normalize it into my life. No one knows me here. All the rest are being shipped home with all the products to take care of them.
Next step is talking to the boys about these changes that are a-coming. I haven't talked to them about my chemo/hair loss yet because it hadn't been definite until yesterday.
Next step is talking to the boys about these changes that are a-coming. I haven't talked to them about my chemo/hair loss yet because it hadn't been definite until yesterday.
Thursday, March 9, 2017
Severe Wind Storm and onto Sloan Kettering
The irony - I was supposed to race to the oncologist's office after work and pick up my oncotype reports. Wednesday's "high wind advisory" turned out to be a severe wind storm with gusts up to 81 mph reported at the ROC airport. So, around 1:30, I got a phone message saying that Interlakes Oncology lost power in both Batavia and Brockport offices and were closing now and that I would not be able to pick up my reports. Right. Yes, this is how things go. The office manager called me right away and asked what she could do. I called our school office (we were running on a generator at this point) to see if we could accept a fax. Not working. I called Evan and had him dig up the fax number for Sloan and hoped that Interlakes in Monroe county still had power and could send it. (They did and they did - whew)
Onto Wednesday afternoon. The wind storm made dismissal at school a lengthy process. In the meantime I was receiving calls from Will and James' school saying that afterschool care was cancelled and they were putting the kids on the bus to go home! Eeek! I was stuck at school, they were on their way home, and thankfully Evan was not working and was able to meet their bus. We didn't have power at home and, of course, the first thing the kids did when they got home was flush the toilet. So, that meant the well pump lost it's prime and will not recover without a lot of effort and swear words. Got home, put everyone in fleeces, ate pb&banana sandwiches and took the boys over to my brother and SIL's. There were so many trees down that we had to turn around and take detours several times! Thankfully they still had power. James has been a disaster all week in anticipation of being left for 3 nights. Usually the tears don't work on me....but this time they did.
Returned home at 9pm just as Dave was returning from BUF airport. Strongly suggested we get a hotel near the airport so we could shower and leave from there. Nah, Dave said, we'll fly out at the crack of dawn and arrive in NYC, check into the hotel, and take a nice shower before the appointment. Turns out we couldn't check in until later that day.....which is why I spent the whole morning traipsing around classy NYC in my DAMN PAJAMAS! Ugh. Anyway, left Evan in the dark, cold, waterless house - had to flip the well pump circuit breaker for fear that the power would come on and the pump would burn up without a prime. There is an 18 year old in charge of it, after all. Double ugh.
It's now noon and we were able to check in and SHOWER - thank the lord. Heading to appointment next.
Sloan Kettering - wow - we were impressed! We met with an oncologist fellow from Ireland first. His accent, intelligence, and fast-pace were amazing. He knew everything about my case. This is the first time a doctor didn't make errors about what they thought that knew about me. He spent about an hour with us. He knew his stuff, was able to answer our questions, and sited study after study to support everything. We then met with Dr. Comen, along with the fellow, and continued our conversation. They 100% agree that I need chemo. Again, saying that I am so young and that I am raising children - the "young" part never, ever, ever gets old. However, I learned that I am somewhat rare to have this cancer at such a younger age as it usually picks women in their 50s and 60s. Lucky me. We discussed different chemo options. During our visit, they brought my case in front of 5 sets of peers at Sloan so everyone had a chance to weigh in, and in essence, I got 7 different 2nd opinions at that visit. They narrowed my chemo down to 2 options: ACT and TC. Those initials stand for chemo drug cocktails, which I won't even pretend to be able to spell or pronounce! Both cocktails could do the trick, but ACT might be a tad better - but not without some potential side effects of heart problems and leukemia. The chances are small, but there.....but the benefit of the drug outweighs the worry of those side effects. We left there feeling very good about this recommendation. They will write up a report for us to take to my oncologist in Brockport. Sloan says these drugs can be administered without a port in my chest and that the cycles would last 4 months. However, it is up to each individual oncologist office to determine if they want you to have a port. Apparently it depends on how good their nurses are at starting your IV each time. I will always have to use my right arm. Keeping my March 17th surgery date for port placement until I can determine if they need me to get it.
Because I have an estrogen fed cancer, there is some talk of putting me into immediate menopause. The chemo has a chance of starting that process. I could also take Lupron shots to put me into menopause. This would all be decided upon after chemo. Lots of side effects, but namely hot flashes. Dave decided that was a good time and good idea to ask exactly what a hot flash is. Smh. The doctor explained that hell. I then asked the doctor what the life expectancy is of spouses who ask such questions. Apparently it's not a long life expectancy.
Also, after all the oncotype testing hell, they neglected to get my HER2 scores for all the tumors. We have to call and have that done. If I am HER2 positive, I would need an additional chemo drug. They would guess that I am not, but it needs to be checked. So, excited to start that damn process up again....
Left that appointment and went to the wig store that is supposed to be the best in NYC. Set up an appointment for tomorrow. Tried on a couple of wigs......and left and drank a lot of wine.
Onto Wednesday afternoon. The wind storm made dismissal at school a lengthy process. In the meantime I was receiving calls from Will and James' school saying that afterschool care was cancelled and they were putting the kids on the bus to go home! Eeek! I was stuck at school, they were on their way home, and thankfully Evan was not working and was able to meet their bus. We didn't have power at home and, of course, the first thing the kids did when they got home was flush the toilet. So, that meant the well pump lost it's prime and will not recover without a lot of effort and swear words. Got home, put everyone in fleeces, ate pb&banana sandwiches and took the boys over to my brother and SIL's. There were so many trees down that we had to turn around and take detours several times! Thankfully they still had power. James has been a disaster all week in anticipation of being left for 3 nights. Usually the tears don't work on me....but this time they did.
Returned home at 9pm just as Dave was returning from BUF airport. Strongly suggested we get a hotel near the airport so we could shower and leave from there. Nah, Dave said, we'll fly out at the crack of dawn and arrive in NYC, check into the hotel, and take a nice shower before the appointment. Turns out we couldn't check in until later that day.....which is why I spent the whole morning traipsing around classy NYC in my DAMN PAJAMAS! Ugh. Anyway, left Evan in the dark, cold, waterless house - had to flip the well pump circuit breaker for fear that the power would come on and the pump would burn up without a prime. There is an 18 year old in charge of it, after all. Double ugh.
It's now noon and we were able to check in and SHOWER - thank the lord. Heading to appointment next.
Sloan Kettering - wow - we were impressed! We met with an oncologist fellow from Ireland first. His accent, intelligence, and fast-pace were amazing. He knew everything about my case. This is the first time a doctor didn't make errors about what they thought that knew about me. He spent about an hour with us. He knew his stuff, was able to answer our questions, and sited study after study to support everything. We then met with Dr. Comen, along with the fellow, and continued our conversation. They 100% agree that I need chemo. Again, saying that I am so young and that I am raising children - the "young" part never, ever, ever gets old. However, I learned that I am somewhat rare to have this cancer at such a younger age as it usually picks women in their 50s and 60s. Lucky me. We discussed different chemo options. During our visit, they brought my case in front of 5 sets of peers at Sloan so everyone had a chance to weigh in, and in essence, I got 7 different 2nd opinions at that visit. They narrowed my chemo down to 2 options: ACT and TC. Those initials stand for chemo drug cocktails, which I won't even pretend to be able to spell or pronounce! Both cocktails could do the trick, but ACT might be a tad better - but not without some potential side effects of heart problems and leukemia. The chances are small, but there.....but the benefit of the drug outweighs the worry of those side effects. We left there feeling very good about this recommendation. They will write up a report for us to take to my oncologist in Brockport. Sloan says these drugs can be administered without a port in my chest and that the cycles would last 4 months. However, it is up to each individual oncologist office to determine if they want you to have a port. Apparently it depends on how good their nurses are at starting your IV each time. I will always have to use my right arm. Keeping my March 17th surgery date for port placement until I can determine if they need me to get it.
Because I have an estrogen fed cancer, there is some talk of putting me into immediate menopause. The chemo has a chance of starting that process. I could also take Lupron shots to put me into menopause. This would all be decided upon after chemo. Lots of side effects, but namely hot flashes. Dave decided that was a good time and good idea to ask exactly what a hot flash is. Smh. The doctor explained that hell. I then asked the doctor what the life expectancy is of spouses who ask such questions. Apparently it's not a long life expectancy.
Also, after all the oncotype testing hell, they neglected to get my HER2 scores for all the tumors. We have to call and have that done. If I am HER2 positive, I would need an additional chemo drug. They would guess that I am not, but it needs to be checked. So, excited to start that damn process up again....
Left that appointment and went to the wig store that is supposed to be the best in NYC. Set up an appointment for tomorrow. Tried on a couple of wigs......and left and drank a lot of wine.
Tuesday, March 7, 2017
Oncotype results are in...
Last Friday Dave called the lab in california. They said they had sent the first oncotype result to my oncologist. Friday was insanely busy as work and I never got a chance to call and ask. I called Monday and they were closed, of course. I called today and talked to the receptionist. Yes, they had the oncotype results. She put me on hold two times as I asked about picking up the report. I could tell she didn't want to hand me over this report. She tried to get me to make an appointment for Wednesday to hear about the results. I couldn't, and Dave is out of town. Finally she asked if she could call me back with an answer. Eye roll. Fine.
The office called and left me a message several hours later and I called back after work. They have received ALL FIVE oncotype results! That is excellent news because we didn't think we'd have them all prior to visiting Sloan Kettering on Thursday. Even better, after I told her I couldn't come in for an appointment, she reviewed the results with me on the phone and told me I can swing by and pick up a copy Wednesday after work. Whew!
The results, as the doctor explained, were "interesting". I'm not really sure that's a good thing to hear. She expected all the tumors to have the exact same oncotype score. That is why it is protocol with most insurance companies to only have one tested. However, three of mine were the same and two were different. Not expected. I do not know what it means - good or bad. I hope Sloan Kettering has some insight. My oncotype scores were: 22, 22, 22, 17, 28. They have to base treatment on the highest number. The 17 falls in the "low" need for chemo. The rest fall in the "intermediate" need for chemo. The cut-off for "high" need for chemo is 30, so one of my scores is kind of high. Knowing these numbers, her recommendation is exactly what she stated before: Chemo for 3 months (every 3 weeks). I would not need the port in my chest as these can be administered through my arm veins. I would defintely lose my hair with this cocktail.
We are flying out to NYC Thursday morning at 5:40am. Our appointment at Sloan is at 2:20pm. I'm dropping the boys off at my brother and SIL's Wednesday night, and coming home on Saturday. They are gun-shy about being away from us for 3 nights - as that is what they endured so recently when I was in the hospital. Feeling heavy guilt about that, but I know they have each other and will survive. Bummed that this is also Evan's week home for spring break. Feeling like mother of the year right here. :/ Hopefully this is a worthwhile trip.
The office called and left me a message several hours later and I called back after work. They have received ALL FIVE oncotype results! That is excellent news because we didn't think we'd have them all prior to visiting Sloan Kettering on Thursday. Even better, after I told her I couldn't come in for an appointment, she reviewed the results with me on the phone and told me I can swing by and pick up a copy Wednesday after work. Whew!
The results, as the doctor explained, were "interesting". I'm not really sure that's a good thing to hear. She expected all the tumors to have the exact same oncotype score. That is why it is protocol with most insurance companies to only have one tested. However, three of mine were the same and two were different. Not expected. I do not know what it means - good or bad. I hope Sloan Kettering has some insight. My oncotype scores were: 22, 22, 22, 17, 28. They have to base treatment on the highest number. The 17 falls in the "low" need for chemo. The rest fall in the "intermediate" need for chemo. The cut-off for "high" need for chemo is 30, so one of my scores is kind of high. Knowing these numbers, her recommendation is exactly what she stated before: Chemo for 3 months (every 3 weeks). I would not need the port in my chest as these can be administered through my arm veins. I would defintely lose my hair with this cocktail.
We are flying out to NYC Thursday morning at 5:40am. Our appointment at Sloan is at 2:20pm. I'm dropping the boys off at my brother and SIL's Wednesday night, and coming home on Saturday. They are gun-shy about being away from us for 3 nights - as that is what they endured so recently when I was in the hospital. Feeling heavy guilt about that, but I know they have each other and will survive. Bummed that this is also Evan's week home for spring break. Feeling like mother of the year right here. :/ Hopefully this is a worthwhile trip.
Wednesday, March 1, 2017
New oncologist
Dave is back to traveling this week and I am back to work full time. While I'm thrilled to be back, it's seriously kicking my butt. I have become so out of shape!! By the time I arrived at school on Monday, my arms were trembling. I was dead in the water by lunchtime. I collapsed on the couch when I got home. Tuesday was a little better. But today every muscle in my abdomen is screaming. I'm not used to the stairs, walking, and stretching my stomach skin. Even my badge and keys on my lanyard hitting against the front of me hurts. Two more days.....
This afternoon I met with my new oncologist in Brockport. Dr. Jessica Kleiner. I really liked her. She was able to explain the reasoning behind the protocol of only having one tumor tested. It is believed that all the tumors are from the same breast cancer, therefore, they should all come back with the same oncotype. She is curious to see if they do, and now, so am I. The oncotype number will either be low, intermediate, or high. If it's low, chemo will not help prevent future cancers. If it's high, chemo will help to prevent future cancers. If it's intermediate, it's a gray area and all your personal choice. Of course, she predicts that mine will be a gray area. So, I may have to determine if it's worth chemo to have a 6% extra chance of still being alive in 10 years.
She wasn't as alarmist as the first oncologist. She does not believe that I will need an aggressive chemo. She thinks I could be considered for 12 weeks, getting chemo every 3 weeks....and that it can be administered through an IV in my arm. She says it is a more mild chemo and won't burn my veins. So, now back to waiting for the oncotype testing to come back. One tumor result is due March 8th and the others are due March 10th. I am now even more interested in a 2nd opinion at Sloan!
In the meantime, I have surgery scheduled for March 17th for the port placement. It's a one hour, same day surgery. Hopefully I get to cancel that.
I also have a long overdue hair appointment for a cut and color on March 14th. If I'm going forward with chemo, I'll have to cancel that, as well. No need to spend money on my hair if I'm not going to have it after 2 weeks. I've been looking at wigs. It's a bit overwhelming.
This afternoon I met with my new oncologist in Brockport. Dr. Jessica Kleiner. I really liked her. She was able to explain the reasoning behind the protocol of only having one tumor tested. It is believed that all the tumors are from the same breast cancer, therefore, they should all come back with the same oncotype. She is curious to see if they do, and now, so am I. The oncotype number will either be low, intermediate, or high. If it's low, chemo will not help prevent future cancers. If it's high, chemo will help to prevent future cancers. If it's intermediate, it's a gray area and all your personal choice. Of course, she predicts that mine will be a gray area. So, I may have to determine if it's worth chemo to have a 6% extra chance of still being alive in 10 years.
She wasn't as alarmist as the first oncologist. She does not believe that I will need an aggressive chemo. She thinks I could be considered for 12 weeks, getting chemo every 3 weeks....and that it can be administered through an IV in my arm. She says it is a more mild chemo and won't burn my veins. So, now back to waiting for the oncotype testing to come back. One tumor result is due March 8th and the others are due March 10th. I am now even more interested in a 2nd opinion at Sloan!
In the meantime, I have surgery scheduled for March 17th for the port placement. It's a one hour, same day surgery. Hopefully I get to cancel that.
I also have a long overdue hair appointment for a cut and color on March 14th. If I'm going forward with chemo, I'll have to cancel that, as well. No need to spend money on my hair if I'm not going to have it after 2 weeks. I've been looking at wigs. It's a bit overwhelming.
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