Today has been a pretty good day. I don't think that I have bounced back as much as I did after the first chemo, but today I finally felt pretty well all day. Good enough to be downstairs and awake all day long. I am exhausted right now, but I begin to question whether it is still the chemo effects, or the fact that I have been laying around not doing much of anything for what already feels like a long time. Hhmmm.
As an update, up until today I have continued to feel such a lack of energy. My stomach has remained cooperative, and that is such a good thing. Caroline ended up sick on Tuesday night, with a fever and head cold, so she had to stay home on Wednesday. Thankfully she was able to go back today, but she is still coughing and congested. I have been trying to avoid getting those germs. Both kids ended the weekend with stuffy noses, and I don't know whether it was all the close contact with the soccer all weekend, the heat, or who knows?
One new thing is my taste and this strange feeling in my mouth. For several days I have noticed that I keep getting this weird feeling in my mouth, sort of like there's a skim or thin layer inside my mouth. It is sort of like when you eat something really tart, and then the inside of your mouth feels "coated" for a few minutes. It is difficult to describe since it has never happened before. One common side effect is mouth sores, so I have been on high alert for that, but so far so good. Staying hydrated is supposed to help with that. Apparently the chemo affects the cells on our bodies that replicate the fastest (like cancer). That is part of the reason for the hair loss. But also, I did not know that the cells on the inside of our mouths completely renew themselves in a 24 hour period. I think that I am remembering that little fact correctly. Anyway, I guess it should not be surprising that I am beginning to have some mouth issues.
The mouth coating isn't that big of a deal, but I am not happy about the fact that my sense of taste has been affected. I just discovered this and confirmed it yesterday. What a bummer. I happen to be a person who really appreciates good tasting food, and now, it seems, that is on hold. I will tell the doctor about it next time, but again, in the big scheme of things.....does this count as a legitimate complaint in the context of cancer and side effects? I guess not. So far, all I can tell is that there is a strange after taste when I eat or drink...sort of medicine-like. I have heard people describe it as metallic, but I am not sure. I was electrocuted once, and THAT tasted distinctly metallic. This is in that direction but less so. And it doesn't seem as though I am getting the full taste of what I am eating. I had popcorn last night and regardless of how much salt I put on it, it didn't taste salty. Big boo on that.
Finally...my hair. What a disaster. Today especially it felt like a ton came out. I have patches of nothing and patches of hair. I guess it is good that we can joke about it. Chris and I were just saying that it looks like I was bit by a rabid dog, or somehow contracted leprosy. I am not saying any of that is actually funny, but in the context we used, it made me smile. At this point, we are both ready for it to finish coming out. I have had head aches over the last few days, and today was better, but this evening I have one again. I am not sure, but I relate these to the hair coming out. Also, my scalp is soooo tender. It hurts to just lightly touch it. Again, I am hoping that after this process is complete, that the tenderness resolves and the head aches clear up. I have never been one to have head aches (thankfully!), so I am a wimp about this pounding.
The good news is that I do not have the next chemo until NEXT THURSDAY!! That is a whole week away! I am glad for this time and the long weekend. I am so thankful for the way the timing worked out to be able to maximize time with my precious family. Tomorrow is the home opening high school football game at our new school and there is a tailgate party for new families that I am expecting to be able to attend. I have still not changed my feeling about R2, but I know I have to make my peace with her and get over myself. I am looking forward to this new adventure (local football on a Friday night) and to being with the kids as they experience high school football for the first time. I loved attending our games back in the day, and I hope they think it is fun, too.
In the meantime, I had occasion to spend some time this afternoon reading my Bible, and I was trying to continue where I was last time, but I kept wanting to go back to Psalms and read. I just love the book of Psalms. After re-reading my favorite, Psalm 23, I started skipping around, and I came to Psalm 32 and I loved this part:
Therefore let all the faithful pray to you
while you may be found;
surely the rising of the mighty waters
will not reach them.
7 You are my hiding place;
you will protect me from trouble
and surround me with songs of deliverance.
Good night friends! And sweet dreams!
Thursday, August 28, 2014
Tuesday, August 26, 2014
Round 2, Day 8
There really is not much to update, which I guess is a good thing. The overwhelming issue I have been dealing with is fatigue. Big time fatigue. Compared to the stomach pain I had for the last round, I will take fatigue, hands down. Even the nausea has been manageable. I think maybe I have the "luxury" of taking it really, super easy, which seems to help me a bunch every time I begin to feel sick. If I had a job, or younger children at home, which prohibited me from sitting down or laying down as soon as I begin to feel badly, then this would be a much harder battle. But, as it is, I count my blessings that if I can just be really still as soon as I begin to feel queasy, it often passes. Oh yes....I also need air conditioning. Being cool seems to help, also (even though I WAS one of those people who was freezing constantly.)
Which brings me to this weekend's heat wave plus soccer tournament. I had hoped to make it out to Conyers and Covington for the big tournament that both kids were playing in. But, Jonathan had 8:00 AM games both days (requiring them to leave home at 6:15), and for several reasons I ended up shuttling Caroline out there on Saturday, suffering through her 1:00 game, then shuttling her to another field to join Chris and Jonathan, then bailed and came back. I know I am supposed to avoid the sun with the Adriamycin, and I tried to stay in the shade of our covered chair, but it was so insufferably hot out there I thought I was going to pass out. I was done for the rest of the day and then didn't even try it on Sunday. I hate to miss out on these things, but I felt so terrible I couldn't keep up. Other than that outing, I literally napped, read, watched TV all weekend. I feel like I have become the laziest person in the world....a total couch potato. But honestly, my head feels so heavy at times it feels like considerable work just to sit upright.
Today is Tuesday and I think I am beginning to feel a little more energy. According to the last schedule, by tonight I "should be" feeling quite a bit better. I have had headaches since Sunday, but BC headache powders seems to help. I think it might be the remaining hair "releasing." My head is itching a bunch, too, and I am sure it is the hair coming out that is the cause. I ended up feeling glad for the little bit of hair that remained....my little fuzzy covering. At this point, it is looking pretty ragged, with patches missing. I want to say that I'll be happy when the process is finished (that's what Chris said), but it's not true. I will be glad to have one less thing to "deal" with, however. I am working on changing my mindset about R2. Not there yet. My preference is to stay home and wear my little cap instead of dealing with getting R2 in place and combed out and adjusted. I can at least now understand how women get to the point of saying - ENOUGH. This is a hassle and gives me headaches and is hot and I don't need this. Many look very attractive in their cute scarves and hats. Again...not there yet, but at least now I get it.
I want to get an update out, but I guess my heart isn't in it today. This post feels choppy and unorganized - sorry! Thanks for the comments! I was excited to see them.
Which brings me to this weekend's heat wave plus soccer tournament. I had hoped to make it out to Conyers and Covington for the big tournament that both kids were playing in. But, Jonathan had 8:00 AM games both days (requiring them to leave home at 6:15), and for several reasons I ended up shuttling Caroline out there on Saturday, suffering through her 1:00 game, then shuttling her to another field to join Chris and Jonathan, then bailed and came back. I know I am supposed to avoid the sun with the Adriamycin, and I tried to stay in the shade of our covered chair, but it was so insufferably hot out there I thought I was going to pass out. I was done for the rest of the day and then didn't even try it on Sunday. I hate to miss out on these things, but I felt so terrible I couldn't keep up. Other than that outing, I literally napped, read, watched TV all weekend. I feel like I have become the laziest person in the world....a total couch potato. But honestly, my head feels so heavy at times it feels like considerable work just to sit upright.
Today is Tuesday and I think I am beginning to feel a little more energy. According to the last schedule, by tonight I "should be" feeling quite a bit better. I have had headaches since Sunday, but BC headache powders seems to help. I think it might be the remaining hair "releasing." My head is itching a bunch, too, and I am sure it is the hair coming out that is the cause. I ended up feeling glad for the little bit of hair that remained....my little fuzzy covering. At this point, it is looking pretty ragged, with patches missing. I want to say that I'll be happy when the process is finished (that's what Chris said), but it's not true. I will be glad to have one less thing to "deal" with, however. I am working on changing my mindset about R2. Not there yet. My preference is to stay home and wear my little cap instead of dealing with getting R2 in place and combed out and adjusted. I can at least now understand how women get to the point of saying - ENOUGH. This is a hassle and gives me headaches and is hot and I don't need this. Many look very attractive in their cute scarves and hats. Again...not there yet, but at least now I get it.
I want to get an update out, but I guess my heart isn't in it today. This post feels choppy and unorganized - sorry! Thanks for the comments! I was excited to see them.
Friday, August 22, 2014
Round 2, Day 4
It is Friday morning, and I am sorry I haven't updated sooner. It has been a long, exhausting and eventful week. The second round of chemo went fine. My friend Johanna took me, and really, it was pretty uneventful, for which I am thankful. We started off with the oncologist, and blood work. I have a prescription for Lidocaine cream, so before carpool I put a blob of it over the port, covered it with plastic wrap and let it soak in to numb that area. I only felt a small prick when they hooked me up to the IV tubes for the blood and infusions. I got the go ahead, but then when I later received my blood work report, I see that a few things are "off" but I am assuming not enough to be a big deal. I need to follow up and make sure, I guess.
Chris had meetings that morning, but he was able to come by and spend some time with us while the infusion was happening. I remembered to bring the things I noted the first time, so I was more comfortable....blanket, cozy socks, back pillow mainly. Much better. After we had a bite to eat I couldn't hold my eyes open and fell asleep before everything was finished. That was fine with me.
Mainly, I have been exhausted. I have been sleeping after the kids come home from school (which I hate, but I just can't hold my eyes open), but it has been okay. Jonathan brings his homework into my room and he is "with" me even though I am asleep. Then people have been bringing food, which is a tremendous help and a huge blessing. I have been sleeping though dinner, but then after they finish Chris has been making a little plate for me and then I seem to wake up a bit and eat, then spend some time with the kids. Using a smaller plate has been a good idea. I have learned to eat more often, but small amounts. Some days it feels like I am constantly munching...i keep saltines or at least something on my nightstand. It really helps to push away any queasiness. Another reminder of pregnancy. Anyway - nausea has been more than manageable so far. Thankful for that. Of course, we are still in the "good days." (Days 1-4).
On Wednesday night I felt that I needed to make the "final" decision about my hair appointment scheduled for yesterday, Thursday. Since Monday my hair had been coming out, very steadily. It was problematic in the sense that I was constantly picking it off my clothes and it was tickling my arms. On top of that, I couldn't really "fix" it, so it wasn't looking good anyway. Since chemo started I hadn't used the hair dryer (that I love!), so my hair was looking nappy at best. After showering I was trying to comb it out as gently as I could, but it was a mess. So much hair was coming out. It was crazy the amount of hair that came out and yet how much remained. Never underestimate how much hair is growing on your head! Needless to say, I went round and round on Wednesday night (poor Chris, bless him), crying and rationalizing, and finally decided to stick with the plan. That is my general mantra, anyway. Just stick with the plan and move forward. Decision made.
So, yesterday Chris and I went back to visit our good friends who unfortunately were admitted to Emory this week with a brain tumor. My heart goes out to them, and it sounds selfish to say it, but it sort of helped me to focus on them instead of me, through prayer and just through research, time, etc. They are praying for a miracle and I am praying that with them, too. Chris took me straight from Emory to Piedmont and I met my friends there again, and it was go time. I remained decided, and though everyone offered me opportunities to change my mind, I stuck with my guns. I sat in the beauty salon style chair, had my back to the mirror, and a lap full of tissues, and just cried my way through the beginning. My friends cried along, but overall the atmosphere changed pretty quickly from deep to lighter. We managed to talk about a gamut of things as I tried not to notice all of the hair falling to the floor. My friends commented along about what era I looked like. Jennifer, the awesome hair lady who I just like more and more the more time I spend with her, went in phases and took a few inches at a time (I think). Apparently I went from current, to 1970s to Pat Benatar (80s) and ended up with Sinead O'Connor. I didn't watch any of it. Never saw it, and didn't want to. That was her recommendation and I think that was smart. No reason to torture myself. I could see enough in my friends' eyes. They were very strong for me. I know it wasn't an easy thing to watch.
At one point there was a fire drill at Piedmont...lights started flashing, etc.... and I about freaked out, but at least it was just a drill and we didn't have to exit with half my hair cut off. I welcomed the distraction. Finally she was finished. They scissor cut it (versus shave) to avoid any ingrown hair problem, infection, cut, etc. There is maybe 1/4 to 1/2 inch of hair left. It will still fall out on its own, but will not be all over the place like my long hair. The next decision point was whether I wanted to turn around a look in the mirror. I touched it first, and that was all I could handle. It felt (still feels) so weird, and I panicked a little and just said no. I had it reasonably together at that point and didn't need to go through that drama. I was starting to not feel so good anyway, and was ready to be done. So, she put the wig on me and we worked with it a little. Then she really wanted me to practice with it at least once, but since I didn't want to look in the mirror that was a little challenging, but I felt my way through it and manged to get it on and adjusted the right way. The wig definitely feels better on without all of my hair stuffed under it.
Finally it was time to go and I really wasn't feeling well. When we stepped out in the heat, and with the walking around, I just felt terrible....dizzy, nauseated. Sitting down in the A/C helped and we made it home. I managed to drive carpool and I felt like there was a spotlight on me saying "look at the wig!" I know that is irrational, and immature, and silly, and I will get over it. But, that is how I felt at the moment. I am telling myself that it doesn't matter if it looks like a wig, because it IS a wig. It beats the alternative...for me. I am not ready to walk around bald or with a scarf. That is not my comfort zone. (Well, none of this is comfortable, but I only have control over "so" much.) Immediately the kids were not happy with the wig. It was the very first thing they said when getting in the car. But then again, they usually don't take to any change very quickly. They haven't typically embraced my mild forays into color/highlight experimentation, or small style changes. But, we had a good talk, with me telling them it's okay to not like it. I don't really like it much either. But I think it will grow on us and we should remember that it is serving a purpose and that is all.
Oh....we named the wig. Actually, Jennifer, the hair lady, kept referring to the wig on Monday as a person and "she", etc. So my friends and I decided to name my wig, but we couldn't come up with anything that really spoke to me. I even had Caroline "on it" earlier in the week, and we tried to morph some names together, then we tried names like "Hope" "Grace" "Faith" but nothing was really working and I had almost dismissed the idea, until Jennifer referred to the wig as R2. I loved it. It said Star Wars to me, and it was simple. For anyone who doesn't know, our family loves Star Wars (we all dressed as characters last Halloween), and so this was a nice, lighthearted connection and it let me "bond" with the wig a little (yes, I know I sound like a loon), but from a practical view, it's nice to call the wig by a name instead of continuously referring to "the wig."
I missed "Meet the Teacher Night" last night but Chris was there and soaked it all in. It was all I could do to sit in the car for the kids' soccer practice, with the A/C blowing on me for an hour. I think both kiddos realized I needed full cooperation last night, so they were troopers and quickly took showers and got themselves ready for bed without me hanging around and checking in. I immediately laid back down, and finally right before bed they wanted to see what my real hair looked like. I had already taken a peak before going to soccer, because I quickly learned that R2 puts considerable pressure on my head. That is going to take some getting used to. Ouch. Not really comfortable past the hour mark. By the time I ripped the wig off and decided to NOT avert my eyes, I was already pretty numb, emotionally. So, it was really anti-climactic. I just looked at it and felt really detached. It was not pretty, and very strange and so foreign. I quickly threw on the comfy turquoise stocking cap I had purchased, and I felt much better. No tears. But, when I took it off for the kids it was a little different. Jonathan just looked shocked, but that was it. Caroline's face immediately crumbled and there were lots of tears, but we got through it. I reassured her that it is okay to feel confused and sad, and we don't have to like this. It is okay to have a bad day, but that we need to stay focused on the end game here. Beating cancer. This is part of the process, and the hair will grow back, and we cannot make it a bigger deal than it needs to be. I assured her that it would be better in the morning, and it was.
Chris had meetings that morning, but he was able to come by and spend some time with us while the infusion was happening. I remembered to bring the things I noted the first time, so I was more comfortable....blanket, cozy socks, back pillow mainly. Much better. After we had a bite to eat I couldn't hold my eyes open and fell asleep before everything was finished. That was fine with me.
 |
| Happy to have my cozy blanket. This was a perfect gift from my TX girlfriends back in the Winter when Shingles were my biggest problem. |
 |
| Wow - I am pale. Can't wait to see how I look this Winter (yes, that was sarcasm.) |
Mainly, I have been exhausted. I have been sleeping after the kids come home from school (which I hate, but I just can't hold my eyes open), but it has been okay. Jonathan brings his homework into my room and he is "with" me even though I am asleep. Then people have been bringing food, which is a tremendous help and a huge blessing. I have been sleeping though dinner, but then after they finish Chris has been making a little plate for me and then I seem to wake up a bit and eat, then spend some time with the kids. Using a smaller plate has been a good idea. I have learned to eat more often, but small amounts. Some days it feels like I am constantly munching...i keep saltines or at least something on my nightstand. It really helps to push away any queasiness. Another reminder of pregnancy. Anyway - nausea has been more than manageable so far. Thankful for that. Of course, we are still in the "good days." (Days 1-4).
On Wednesday night I felt that I needed to make the "final" decision about my hair appointment scheduled for yesterday, Thursday. Since Monday my hair had been coming out, very steadily. It was problematic in the sense that I was constantly picking it off my clothes and it was tickling my arms. On top of that, I couldn't really "fix" it, so it wasn't looking good anyway. Since chemo started I hadn't used the hair dryer (that I love!), so my hair was looking nappy at best. After showering I was trying to comb it out as gently as I could, but it was a mess. So much hair was coming out. It was crazy the amount of hair that came out and yet how much remained. Never underestimate how much hair is growing on your head! Needless to say, I went round and round on Wednesday night (poor Chris, bless him), crying and rationalizing, and finally decided to stick with the plan. That is my general mantra, anyway. Just stick with the plan and move forward. Decision made.
So, yesterday Chris and I went back to visit our good friends who unfortunately were admitted to Emory this week with a brain tumor. My heart goes out to them, and it sounds selfish to say it, but it sort of helped me to focus on them instead of me, through prayer and just through research, time, etc. They are praying for a miracle and I am praying that with them, too. Chris took me straight from Emory to Piedmont and I met my friends there again, and it was go time. I remained decided, and though everyone offered me opportunities to change my mind, I stuck with my guns. I sat in the beauty salon style chair, had my back to the mirror, and a lap full of tissues, and just cried my way through the beginning. My friends cried along, but overall the atmosphere changed pretty quickly from deep to lighter. We managed to talk about a gamut of things as I tried not to notice all of the hair falling to the floor. My friends commented along about what era I looked like. Jennifer, the awesome hair lady who I just like more and more the more time I spend with her, went in phases and took a few inches at a time (I think). Apparently I went from current, to 1970s to Pat Benatar (80s) and ended up with Sinead O'Connor. I didn't watch any of it. Never saw it, and didn't want to. That was her recommendation and I think that was smart. No reason to torture myself. I could see enough in my friends' eyes. They were very strong for me. I know it wasn't an easy thing to watch.
 |
| Good friends |
At one point there was a fire drill at Piedmont...lights started flashing, etc.... and I about freaked out, but at least it was just a drill and we didn't have to exit with half my hair cut off. I welcomed the distraction. Finally she was finished. They scissor cut it (versus shave) to avoid any ingrown hair problem, infection, cut, etc. There is maybe 1/4 to 1/2 inch of hair left. It will still fall out on its own, but will not be all over the place like my long hair. The next decision point was whether I wanted to turn around a look in the mirror. I touched it first, and that was all I could handle. It felt (still feels) so weird, and I panicked a little and just said no. I had it reasonably together at that point and didn't need to go through that drama. I was starting to not feel so good anyway, and was ready to be done. So, she put the wig on me and we worked with it a little. Then she really wanted me to practice with it at least once, but since I didn't want to look in the mirror that was a little challenging, but I felt my way through it and manged to get it on and adjusted the right way. The wig definitely feels better on without all of my hair stuffed under it.
Finally it was time to go and I really wasn't feeling well. When we stepped out in the heat, and with the walking around, I just felt terrible....dizzy, nauseated. Sitting down in the A/C helped and we made it home. I managed to drive carpool and I felt like there was a spotlight on me saying "look at the wig!" I know that is irrational, and immature, and silly, and I will get over it. But, that is how I felt at the moment. I am telling myself that it doesn't matter if it looks like a wig, because it IS a wig. It beats the alternative...for me. I am not ready to walk around bald or with a scarf. That is not my comfort zone. (Well, none of this is comfortable, but I only have control over "so" much.) Immediately the kids were not happy with the wig. It was the very first thing they said when getting in the car. But then again, they usually don't take to any change very quickly. They haven't typically embraced my mild forays into color/highlight experimentation, or small style changes. But, we had a good talk, with me telling them it's okay to not like it. I don't really like it much either. But I think it will grow on us and we should remember that it is serving a purpose and that is all.
Oh....we named the wig. Actually, Jennifer, the hair lady, kept referring to the wig on Monday as a person and "she", etc. So my friends and I decided to name my wig, but we couldn't come up with anything that really spoke to me. I even had Caroline "on it" earlier in the week, and we tried to morph some names together, then we tried names like "Hope" "Grace" "Faith" but nothing was really working and I had almost dismissed the idea, until Jennifer referred to the wig as R2. I loved it. It said Star Wars to me, and it was simple. For anyone who doesn't know, our family loves Star Wars (we all dressed as characters last Halloween), and so this was a nice, lighthearted connection and it let me "bond" with the wig a little (yes, I know I sound like a loon), but from a practical view, it's nice to call the wig by a name instead of continuously referring to "the wig."
I missed "Meet the Teacher Night" last night but Chris was there and soaked it all in. It was all I could do to sit in the car for the kids' soccer practice, with the A/C blowing on me for an hour. I think both kiddos realized I needed full cooperation last night, so they were troopers and quickly took showers and got themselves ready for bed without me hanging around and checking in. I immediately laid back down, and finally right before bed they wanted to see what my real hair looked like. I had already taken a peak before going to soccer, because I quickly learned that R2 puts considerable pressure on my head. That is going to take some getting used to. Ouch. Not really comfortable past the hour mark. By the time I ripped the wig off and decided to NOT avert my eyes, I was already pretty numb, emotionally. So, it was really anti-climactic. I just looked at it and felt really detached. It was not pretty, and very strange and so foreign. I quickly threw on the comfy turquoise stocking cap I had purchased, and I felt much better. No tears. But, when I took it off for the kids it was a little different. Jonathan just looked shocked, but that was it. Caroline's face immediately crumbled and there were lots of tears, but we got through it. I reassured her that it is okay to feel confused and sad, and we don't have to like this. It is okay to have a bad day, but that we need to stay focused on the end game here. Beating cancer. This is part of the process, and the hair will grow back, and we cannot make it a bigger deal than it needs to be. I assured her that it would be better in the morning, and it was.
 |
| Still not loving it, but it is a different style than what I am used to. Working on "taming" the layers a bit. To me it screams "wig" but....I like the color. Trying to be positive. |
 |
| Different angle. |
 |
| Checking out the back view. From this view it looks a little more tame and natural, I think. |
Monday, August 18, 2014
Bad Hair Day
This is just a quick, late night update. Remember yesterday when I wrote that I am trusting the Piedmont people know what they are talking about, with regard to the timing of the hair loss? Well I can confirm that they most certainly do. Today is Day 12, and while I woke up in a happy mood, I was quickly shot down to size when I took my shower. I speculated on the phone to Chris right after the shower that I *might* have starting losing my hair, since it sort of felt like more than average came out during shampoo, etc. He said, why don't I test it? So, I grabbed a bunch near my ear and pulled, and it all just came out. I can't really describe what I felt at that moment, but I suppose it was shock, horror, nausea...mainly shock. I know that must sound so crazy to say that I was shocked by something that I have "known" was coming, but apparently I was holding out some unrealistic hope that maybe I was the exception and that just maybe, my hair might not actually come out. I didn't even know I was hoping that....but how else to explain the shock??
So.....I had my breakdown and pulled myself back together, saw the dentist (who I adore....just the best dentist.....great doctor and even better human being.....Dr. Alex Patrick), then immediately was on my way to meet friends for lunch then do the hair appointment together. Needless to say, I have had some trouble keeping a lid on my emotions today, but I had to decide if today was the day to cut down my hair. I wanted to see what advise the hair lady, Jennifer, gave, and of course she said everyone is different. She pulled on a different part of my hair, and not a ton came out. She said this can be a process over several days, but that it does get messy. Usually the 2nd chemo isn't until what would be Day 15 (really becomes Day 1 again), but since mine is coming on what would be Day 13, she said the early dose of Adriamycin could make it really come out fast on Wednesday.
So....I had all of that to weigh. Jennifer's next appointment isn't until Thursday. Logically, I knew that it was a matter of three days, and it didn't make much sense to take more of her time, and mine (plus my two friends there for support), but I simply couldn't make myself do it yet. We tried on the wig again, and tried to redo the part, learned some more about the care for it, and I plan to go back on Thursday. Maybe it's just human nature to procrastinate on things you don't want to do. But...really....in my heart I was thinking I need a couple of days to actually get used to this...for real this time. I did go ahead and buy a little head cover cap for sleeping or wearing when the wig isn't on. It is a pretty turquoise color. I tried on a few head wraps but I couldn't make myself like them....not even a little bit.
So that's the update. Tomorrow I go back for Chemo #2, but really that will make us 50% of the way through the 1st type of cocktail. I don't know what to expect with my hair, but I will be distracted tomorrow by all of the other happenings. I am praying for a smooth process tomorrow...no surprises, happy stomach, and for strength to just accept the hair thing. I am sure once we get past this point, I will be fine...right now it just feels so huge because it is unknown, unpleasant and so far from what anyone would choose. Good night friends!
So.....I had my breakdown and pulled myself back together, saw the dentist (who I adore....just the best dentist.....great doctor and even better human being.....Dr. Alex Patrick), then immediately was on my way to meet friends for lunch then do the hair appointment together. Needless to say, I have had some trouble keeping a lid on my emotions today, but I had to decide if today was the day to cut down my hair. I wanted to see what advise the hair lady, Jennifer, gave, and of course she said everyone is different. She pulled on a different part of my hair, and not a ton came out. She said this can be a process over several days, but that it does get messy. Usually the 2nd chemo isn't until what would be Day 15 (really becomes Day 1 again), but since mine is coming on what would be Day 13, she said the early dose of Adriamycin could make it really come out fast on Wednesday.
So....I had all of that to weigh. Jennifer's next appointment isn't until Thursday. Logically, I knew that it was a matter of three days, and it didn't make much sense to take more of her time, and mine (plus my two friends there for support), but I simply couldn't make myself do it yet. We tried on the wig again, and tried to redo the part, learned some more about the care for it, and I plan to go back on Thursday. Maybe it's just human nature to procrastinate on things you don't want to do. But...really....in my heart I was thinking I need a couple of days to actually get used to this...for real this time. I did go ahead and buy a little head cover cap for sleeping or wearing when the wig isn't on. It is a pretty turquoise color. I tried on a few head wraps but I couldn't make myself like them....not even a little bit.
So that's the update. Tomorrow I go back for Chemo #2, but really that will make us 50% of the way through the 1st type of cocktail. I don't know what to expect with my hair, but I will be distracted tomorrow by all of the other happenings. I am praying for a smooth process tomorrow...no surprises, happy stomach, and for strength to just accept the hair thing. I am sure once we get past this point, I will be fine...right now it just feels so huge because it is unknown, unpleasant and so far from what anyone would choose. Good night friends!
Sunday, August 17, 2014
Day 11
It's Sunday and we are nearing the end of what I have to say has been a really great weekend. Starting on Friday, I woke up feeling almost normal. Thursday was a decent day (comparatively), but I still had the stomach bloat and pain, though it was a little more intermittent. I was able to nap for a couple of hours, so that was good. I had a good night of sleep finally on Thursday night so that helped a lot. My brother and his wife arrived in Georgia Thursday night, so the timing could not have been better! I was able to have my parents and my brother and sister-in-law over on Friday and we didn't really do anything, but I was comfortable to visit and really enjoyed our time together. I was so happy to have my stomach be an almost normal size again that I took a chance and we made plans to meet friends out for dinner on Friday night! I avoided the salad I would have usually had on the side, still not trusting myself around anything green or raw. But...I was out to dinner on a Friday night! I was in shock! So, what I learned in hindsight was, for the First Round, it took 8 full days for the Adriamycin/Cytoxan chemotherapy "cocktail" to work its way through my system. Maybe that will happen again, or maybe it will take longer. I guess it would be too much to hope that it would go faster, based on everything I have read/learned. Everyone says that it wears your body down over time and it takes longer to "bounce back" each time. We shall see.
All of the chemo appointments that I have are on Thursdays except this 2nd round. I have to go back on Tuesday and of course, I am dreading it. The only other "news" is that I have not yet started losing my hair. I have an appointment with Jennifer, the hair lady, tomorrow. It was intended to be the appointment where we do the final wig fitting and she cuts down my hair. However, unless a lot happens over the next 12 hours, we will just pick up the wig and have the preliminary fitting. I don't see why she should cut all of my hair off quite yet. I guess it really shouldn't matter since it is supposed to happen this week anyway, but it just doesn't feel right. I am going with that. I called to ask her about it on Friday, and she advised that the estimate of 10-14 days after this particular cocktail is pretty standard. Friday was Day 9 and she acted like she would have been surprised if it had started by then. I am sure these people know what they are talking about.
So, all in all, I am feeling good right this minute, but nervous about the week. Chris starts to travel again this week. It will be the first "real" week back to school. Round 2 is an unknown. The hair thing is stressful. But, so far my mantra of One Day At A Time has worked, so I will keep it up. I remain incredibly thankful that for anything that comes up, I have a body of people to call upon for help. I plan to do a few things differently this time...eating being the primary change. I know to avoid the salad/veggie stuff for the first week at least. I know I need to start some helpful things on Day 1 (prune juice, and the like). The only upside is that at least this time I don't have all of the port issues to deal with. That area seems to be mostly healed. I still have some discomfort laying on my side, but it is much better and I have pretty well figured out how to arrange pillows to be comfortable even on my side. I will be prepared for Days 1-4 to bring the shakes, weakness, tiredness, intermittent nausea and beginning stomach issues, and Days 5-8 to be the worst as far pain and bigger stomach issues, with shakiness, weakness and tiredness lingering. At least the first time anxiety is behind me. :)
I guess everyone who visited the blog saw the new countdown I put up. It feels like a lot of days until the last treatment, but time has a way of marching on. At this point, I am simply looking forward to the number being a two digit number. That will be cause for celebration. I will close with adding Caroline's special note of encouragement for me. She loves to use our craft supplies, and this beautiful sign hangs proudly on our pantry door.
All of the chemo appointments that I have are on Thursdays except this 2nd round. I have to go back on Tuesday and of course, I am dreading it. The only other "news" is that I have not yet started losing my hair. I have an appointment with Jennifer, the hair lady, tomorrow. It was intended to be the appointment where we do the final wig fitting and she cuts down my hair. However, unless a lot happens over the next 12 hours, we will just pick up the wig and have the preliminary fitting. I don't see why she should cut all of my hair off quite yet. I guess it really shouldn't matter since it is supposed to happen this week anyway, but it just doesn't feel right. I am going with that. I called to ask her about it on Friday, and she advised that the estimate of 10-14 days after this particular cocktail is pretty standard. Friday was Day 9 and she acted like she would have been surprised if it had started by then. I am sure these people know what they are talking about.
So, all in all, I am feeling good right this minute, but nervous about the week. Chris starts to travel again this week. It will be the first "real" week back to school. Round 2 is an unknown. The hair thing is stressful. But, so far my mantra of One Day At A Time has worked, so I will keep it up. I remain incredibly thankful that for anything that comes up, I have a body of people to call upon for help. I plan to do a few things differently this time...eating being the primary change. I know to avoid the salad/veggie stuff for the first week at least. I know I need to start some helpful things on Day 1 (prune juice, and the like). The only upside is that at least this time I don't have all of the port issues to deal with. That area seems to be mostly healed. I still have some discomfort laying on my side, but it is much better and I have pretty well figured out how to arrange pillows to be comfortable even on my side. I will be prepared for Days 1-4 to bring the shakes, weakness, tiredness, intermittent nausea and beginning stomach issues, and Days 5-8 to be the worst as far pain and bigger stomach issues, with shakiness, weakness and tiredness lingering. At least the first time anxiety is behind me. :)
I guess everyone who visited the blog saw the new countdown I put up. It feels like a lot of days until the last treatment, but time has a way of marching on. At this point, I am simply looking forward to the number being a two digit number. That will be cause for celebration. I will close with adding Caroline's special note of encouragement for me. She loves to use our craft supplies, and this beautiful sign hangs proudly on our pantry door.
Thursday, August 14, 2014
Big Day
I don't know what happened with this blog. I had written - and PUBLISHED - a post titled Big Day back on the 12th, but then when I came back to it last night, the post was gone (except for the first two paragraphs). Anyway - Here is what was written, along with my feeble attempt to remember what ELSE was written.
Well....today is definitely a big day in this house. The kiddos started the new year at their new school this morning. I am not exaggerating when I say that I have been overwhelmed by the extent of kindness that has been extended to us, essentially strangers to so many of these people. I know that God is not surprised by any of this, and that His plan is simply unfolding, but when I look back over the agonizing decisions we made...to move from King Valley to Vinings Estates (in the backyard of our new school, though at the time we weren't thinking of schools, we were thinking of a good deal on a great house), then the even more difficult decision to switch schools (which now makes so much more sense, especially logistically), I can't help but think we had to be doing something right. With each decision point we paused, and waited, and prayed, and then we both knew what to do. I remember several times Chris and I talked about, "Gosh, did we think that through enough??" Or, "I can't believe we did that..." but now things are starting to make more sense, and I am convinced that we weren't supposed to "think things through" any more that we did.
The other thing that makes today a BIG DAY is it's our 14 year anniversary. I would have never guessed that we would be at this point 14 years ago, but then again, who thinks that way? We took each other for better or for worse, in sickness and in health...forever, and I cannot stop myself from crying when I think about how fortunate and blessed I am to have Chris as my husband. I hate that over the last year, especially, I feel like I have been a dead weight in the marriage...the one who has slowed us down and caused us to change plans, the one who has made us miss out on fun things and veer off the course we charted. But then I have to remind myself that this has not been a choice that I made...goodness knows. Anyway - it would be impossible for anyone to have a more supportive husband than I do....and yes I know that I am biased, but that is the way it is supposed to be. He has taken time away from work and generally made me his top priority and I am forever thankful to him and for him.
In health news.....my tummy remains my biggest problem. I have had to take the nausea pills only a couple of times, and thankfully, they seem to work. But, I haven't yet found anything that helps with the tummy pain. On Saturday I ate a delicious salad, but it about killed me....bloated belly (think 4/5 months pregnant) with tons of gurgling, pressure, cramping, pain, but nothing else. I have been extra cautious about foods since then, but I cannot seem to get the "bloat" to go away. Very uncomfortable. But in the big scheme of things, this is still better than I imagined I would feel after chemo. So.....not complaining...just explaining. The shakes remain but not as much. I have been drinking tons of fluid, which is supposed to help. And I seem to get tired after every meal, but that's not really so bad. :)
Finally, even though we missed the festivities on Sunday, we were able to attend everything on Monday..... Open House for both Middle and Lower School, plus an All Campus Picnic with food and carnival games/bouncy houses, etc. I think the whole family was happy I managed to stay strong for all of that, and it encouraged me that we were starting the school year in the same way we would have regardless of the cancer. I still can barely stand that everyone new I meet is meeting me under "these" circumstances, but I am trying to not dwell on that. I am trying to just be me, and let new people take me as I am, and remember that there is more to me than this, even though it feels so big and all consuming right now.
Well....today is definitely a big day in this house. The kiddos started the new year at their new school this morning. I am not exaggerating when I say that I have been overwhelmed by the extent of kindness that has been extended to us, essentially strangers to so many of these people. I know that God is not surprised by any of this, and that His plan is simply unfolding, but when I look back over the agonizing decisions we made...to move from King Valley to Vinings Estates (in the backyard of our new school, though at the time we weren't thinking of schools, we were thinking of a good deal on a great house), then the even more difficult decision to switch schools (which now makes so much more sense, especially logistically), I can't help but think we had to be doing something right. With each decision point we paused, and waited, and prayed, and then we both knew what to do. I remember several times Chris and I talked about, "Gosh, did we think that through enough??" Or, "I can't believe we did that..." but now things are starting to make more sense, and I am convinced that we weren't supposed to "think things through" any more that we did.
The other thing that makes today a BIG DAY is it's our 14 year anniversary. I would have never guessed that we would be at this point 14 years ago, but then again, who thinks that way? We took each other for better or for worse, in sickness and in health...forever, and I cannot stop myself from crying when I think about how fortunate and blessed I am to have Chris as my husband. I hate that over the last year, especially, I feel like I have been a dead weight in the marriage...the one who has slowed us down and caused us to change plans, the one who has made us miss out on fun things and veer off the course we charted. But then I have to remind myself that this has not been a choice that I made...goodness knows. Anyway - it would be impossible for anyone to have a more supportive husband than I do....and yes I know that I am biased, but that is the way it is supposed to be. He has taken time away from work and generally made me his top priority and I am forever thankful to him and for him.
In health news.....my tummy remains my biggest problem. I have had to take the nausea pills only a couple of times, and thankfully, they seem to work. But, I haven't yet found anything that helps with the tummy pain. On Saturday I ate a delicious salad, but it about killed me....bloated belly (think 4/5 months pregnant) with tons of gurgling, pressure, cramping, pain, but nothing else. I have been extra cautious about foods since then, but I cannot seem to get the "bloat" to go away. Very uncomfortable. But in the big scheme of things, this is still better than I imagined I would feel after chemo. So.....not complaining...just explaining. The shakes remain but not as much. I have been drinking tons of fluid, which is supposed to help. And I seem to get tired after every meal, but that's not really so bad. :)
Finally, even though we missed the festivities on Sunday, we were able to attend everything on Monday..... Open House for both Middle and Lower School, plus an All Campus Picnic with food and carnival games/bouncy houses, etc. I think the whole family was happy I managed to stay strong for all of that, and it encouraged me that we were starting the school year in the same way we would have regardless of the cancer. I still can barely stand that everyone new I meet is meeting me under "these" circumstances, but I am trying to not dwell on that. I am trying to just be me, and let new people take me as I am, and remember that there is more to me than this, even though it feels so big and all consuming right now.
Saturday, August 9, 2014
Day 3
I am learning the way the doctors label things, and they say that the day you receive chemo is Day 1, then Day 2, etc. until your next round and you start again with Day 1. I have a schedule of follow up drugs at home for certain post chemo days, which include more steroids to help the IV nausea meds last longer. I remember from the Shingles when I had to take so many steroids how they finally kept me up until all hours of the night, and I am praying that doesn't happen again. I also blame the bad dreams I was having back then on the steroids. Really don't want to deal with that again, either. We shall see.
So, on Day 2, yesterday, I went all by myself down to Piedmont and had vitals checked again and had my Neulasta shot (to pump up white blood cells). As soon as I dropped off the kiddos, the big storm hit Smyrna but I knew my babes were in good hands. I beat the storm to Piedmont, but then it hit hard while I was there. Everything looked good with me and my biggest issue was still the port. The shoulder pain (left side) made driving uncomfortable/painful depending on the move, but I know this will get better in a few days. On the way back home it was an ugly mess with tons of water on the road with heavy rain and lightening, but I drove out of it as I neared the perimeter.
By the time I reached my friend's house I was pooped, so she made some hot tea for me, I nibbled on crackers (which seems to help with the queasiness, just like morning sickness) and we just relaxed for a bit. I still have a mental struggle with accepting help from people. It is not comfortable. But, I am realizing why people advised it is best to accept help because I do not feel normal at all. It is kind of hard to describe, and I am only on Day 3. Mentally, I feel scattered. I have been shaking ever since the chemo. I would equate that to having way too much coffee, to the point that I can see my fingers trembling. Yesterday and today I felt ok in the morning, but by after lunch I was pooped. I actually took a nap today, and that never happens. I have been drinking lots of fluids, as advised, to try to circulate the med out of my body as quickly as I can. Thinking I will feel better before too long...
The queasiness comes and goes. I haven't had to use any of the breakthrough nausea med other than once. I count all of that as a win. We all went together this morning for Jonathan's first Academy Soccer Tournament, and that was fun. He scored a goal so I am happy I was there for that. The heat got a little intense, so Caroline and I opted out of the 3:00 game. I hated to miss it, because I so enjoy cheering and watching my boy play, but it was the right move.
I guess that's the update. I am keeping a separate prayer journal and also a journal with feedback for the doctors. They asked me to log how I feel, so I am keeping track of that. Last night I got a little nervous because my temp went up near 100, and I usually run colder than average, like 97.9-98.1, but it passed and was nothing. I am supposed to be watching for foods that don't settle, and anything out of the norm. Already one weird thing that also reminds me of pregnancy....I love non-boring crackers usually, with seeds, or black pepper, veg crackers, whatever. And so when I reached for a cracker to soothe some nausea, I turned to my favorites, and found they disgusted me. The good old saltine cracker is my new best friend. The only other thing that scared me was my scalp started itching a little. The wig lady shared with me that often patients can feel their hair follicles "release" the hair, but that is not supposed to happen until day 10-14. Maybe it's just that I didn't wash my hair today. I was told to skip days and to avoid the hair dryer, etc. That might prolong the hair loss. So if you see me with messy hair, then you know it is mine. If my hair looks perfectly coiffed, then you know I am already in my snazzy wig. Still haven't made the final decision on that, either.
Finally, I remain overwhelmed by old friends and new. I met a neighbor this afternoon, who is a friend of a friend, and a mom at our new school. She went out of her way to seek me out, introduce herself, offer all kinds of support, and it is so humbling. Another friend brought dinner tonight and when I went down to see what she had done, I couldn't believe it. Such thought and preparation had gone into her dinner, along with dessert and fancy breakfast for tomorrow! And last night my sweet friend prepared a delicious home cooked dinner, but then included individually frozen portions of another meal for later down the road. Somehow, I have managed to accumulate a group of amazing people in my life, who seem to rally whenever the need arises. How did I get so lucky? But really, I am not a big believer in luck. I think these people have been placed here very specifically, and that makes all of this even more overwhelming, for lack of a better word. I don't know how this will play out long term, and I don't like to dwell on that. I am dwelling on the present, and moving forward day by day. I really think God has put a protective barrier around my mind, because I am usually a forward thinker, pondering the what ifs and having a plan for each scenario. But over the last few weeks I haven't been plagued with those kinds of thoughts that often lead to stress. I have been able to focus on the next 24-48 hours, and that is good enough.
So, on Day 2, yesterday, I went all by myself down to Piedmont and had vitals checked again and had my Neulasta shot (to pump up white blood cells). As soon as I dropped off the kiddos, the big storm hit Smyrna but I knew my babes were in good hands. I beat the storm to Piedmont, but then it hit hard while I was there. Everything looked good with me and my biggest issue was still the port. The shoulder pain (left side) made driving uncomfortable/painful depending on the move, but I know this will get better in a few days. On the way back home it was an ugly mess with tons of water on the road with heavy rain and lightening, but I drove out of it as I neared the perimeter.
By the time I reached my friend's house I was pooped, so she made some hot tea for me, I nibbled on crackers (which seems to help with the queasiness, just like morning sickness) and we just relaxed for a bit. I still have a mental struggle with accepting help from people. It is not comfortable. But, I am realizing why people advised it is best to accept help because I do not feel normal at all. It is kind of hard to describe, and I am only on Day 3. Mentally, I feel scattered. I have been shaking ever since the chemo. I would equate that to having way too much coffee, to the point that I can see my fingers trembling. Yesterday and today I felt ok in the morning, but by after lunch I was pooped. I actually took a nap today, and that never happens. I have been drinking lots of fluids, as advised, to try to circulate the med out of my body as quickly as I can. Thinking I will feel better before too long...
The queasiness comes and goes. I haven't had to use any of the breakthrough nausea med other than once. I count all of that as a win. We all went together this morning for Jonathan's first Academy Soccer Tournament, and that was fun. He scored a goal so I am happy I was there for that. The heat got a little intense, so Caroline and I opted out of the 3:00 game. I hated to miss it, because I so enjoy cheering and watching my boy play, but it was the right move.
I guess that's the update. I am keeping a separate prayer journal and also a journal with feedback for the doctors. They asked me to log how I feel, so I am keeping track of that. Last night I got a little nervous because my temp went up near 100, and I usually run colder than average, like 97.9-98.1, but it passed and was nothing. I am supposed to be watching for foods that don't settle, and anything out of the norm. Already one weird thing that also reminds me of pregnancy....I love non-boring crackers usually, with seeds, or black pepper, veg crackers, whatever. And so when I reached for a cracker to soothe some nausea, I turned to my favorites, and found they disgusted me. The good old saltine cracker is my new best friend. The only other thing that scared me was my scalp started itching a little. The wig lady shared with me that often patients can feel their hair follicles "release" the hair, but that is not supposed to happen until day 10-14. Maybe it's just that I didn't wash my hair today. I was told to skip days and to avoid the hair dryer, etc. That might prolong the hair loss. So if you see me with messy hair, then you know it is mine. If my hair looks perfectly coiffed, then you know I am already in my snazzy wig. Still haven't made the final decision on that, either.
Finally, I remain overwhelmed by old friends and new. I met a neighbor this afternoon, who is a friend of a friend, and a mom at our new school. She went out of her way to seek me out, introduce herself, offer all kinds of support, and it is so humbling. Another friend brought dinner tonight and when I went down to see what she had done, I couldn't believe it. Such thought and preparation had gone into her dinner, along with dessert and fancy breakfast for tomorrow! And last night my sweet friend prepared a delicious home cooked dinner, but then included individually frozen portions of another meal for later down the road. Somehow, I have managed to accumulate a group of amazing people in my life, who seem to rally whenever the need arises. How did I get so lucky? But really, I am not a big believer in luck. I think these people have been placed here very specifically, and that makes all of this even more overwhelming, for lack of a better word. I don't know how this will play out long term, and I don't like to dwell on that. I am dwelling on the present, and moving forward day by day. I really think God has put a protective barrier around my mind, because I am usually a forward thinker, pondering the what ifs and having a plan for each scenario. But over the last few weeks I haven't been plagued with those kinds of thoughts that often lead to stress. I have been able to focus on the next 24-48 hours, and that is good enough.
First Day of Chemo
I am not feeling so great, so this will be really short. Today went smoother and easier than I had feared. Before each chemo treatment they have to draw blood and take all the vitals so they can monitor any changes. The port that was placed yesterday came in handy with getting the blood.
But, I was feeling pretty lousy when I woke up...probably because of the rough night last night. My left shoulder began a constant throb so I had to take more pain med, but then I was up with a bunch of nausea (assuming reacting to the pain pills and the anesthesia). At least I could drink a cup of coffee this AM and we found some of the nausea med left over from the Shingles episode.
Anyway, I was still freaked out to walk into the Infusion Room, but I held it together. I found a spot I liked....Next to a wall and facing a window that overlooks Midtown. They washed down my recliner in alcohol, and it was comfy. Note to self: Bring a blanket, pillow and grippy socks next time. They ran some saline, Ativan to help me relax, steroids to help make the nausea med work longer, then the nausea med, then finally we got to the bright red chemo followed by a much bigger bag of the 2nd chemo drug. Altogether we were there almost 5 hours. The nurses were all great...can't say enough good about all of the personnel.
I am about to sign off because I am so tired and growing a little concerned bc I am starting to feel queasy and I didn't think that was supposed to happen this fast. Hmmmm.
Here is a shot from before the port placement surgery yesterday We had a two hour delay so I had to lay in this bed about three hours. This is the 1st one with a TV, but it was on a cooking channel, and I hadn't eaten since dinner the night before, so that wasn't awesome, but still a distraction.
But, I was feeling pretty lousy when I woke up...probably because of the rough night last night. My left shoulder began a constant throb so I had to take more pain med, but then I was up with a bunch of nausea (assuming reacting to the pain pills and the anesthesia). At least I could drink a cup of coffee this AM and we found some of the nausea med left over from the Shingles episode.
Anyway, I was still freaked out to walk into the Infusion Room, but I held it together. I found a spot I liked....Next to a wall and facing a window that overlooks Midtown. They washed down my recliner in alcohol, and it was comfy. Note to self: Bring a blanket, pillow and grippy socks next time. They ran some saline, Ativan to help me relax, steroids to help make the nausea med work longer, then the nausea med, then finally we got to the bright red chemo followed by a much bigger bag of the 2nd chemo drug. Altogether we were there almost 5 hours. The nurses were all great...can't say enough good about all of the personnel.
I am about to sign off because I am so tired and growing a little concerned bc I am starting to feel queasy and I didn't think that was supposed to happen this fast. Hmmmm.
Here is a shot from before the port placement surgery yesterday We had a two hour delay so I had to lay in this bed about three hours. This is the 1st one with a TV, but it was on a cooking channel, and I hadn't eaten since dinner the night before, so that wasn't awesome, but still a distraction.
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