ALL DONE ALL DONE ALL DONE!!!!!!!!!!!!!!!!!!!!!!!!!
ALL. DONE. WITH. CHEMO. and I'm gonna go ahead and say it FOREVER!
Yep, I said forever. Welcome to my mood swing, jump onto my roller coaster, it's a fun ride. Today I am saying ALL DONE FOREVER.
Yesterday's chemo was fairly uneventful although very looooooooooooooooooooooooong. We had a long meeting with Dr Kurup, talking about the future and our next steps. She wants to see me my last week of radiation as a check up and to run my numbers to make sure I am healing. That is when we will talk about starting Tamoxifen - the estrogen blocking drug that I will be on for 5 years. This drug does not stop my body from producing estrogen (like the hormone blocking therapy that Dr Chui recommended). Tamoxifen blocks my body's estrogen from bonding with breast cancer cells, making it so that estrogen is not the fertilizer that my cancer loves. Other than that it was a pretty routine appointment, with the exception that we were all giving each other emotional high fives for making it all the way through and getting to our last chemo session.
Now another thing I was worried about for yesterday but didn't want to talk about (because sometimes don't you feel like if you say it, it will happen?) - I was worried my numbers wouldn't be good. I had tell tale signs for the entire 2 weeks after last chemo that my platelet count was low. No dramatic bruising (just some light ones) but a lot of bleeding out of the nose. Nothing gushing....just more blood than normal and it didn't go away until a couple days before chemo this round. When I mentioned this to Dr Kurup she frowned and said, let's get the results of your blood work stat. It wasn't in the system yet, so she walked over to the lab. I was nervous the entire time (especially since the frown!). When she came back in she had total poker face and then said "149". WHAT? My platelet count is 149!!! That is fantastic! I whooped! It has to be over 100 to continue! Another emotional high five. Never been so stoked to hear that I could get chemo :)
And the best thing about yesterday - we had Karen!!!!!!!!!!! I cheered when she came into the exam room. I told her I missed her and was so glad that she was here for my last session. She said she made sure that she got me today when she saw me on the calendar (oh, and bonus news, she has been on vacation for the past 2 1/2 weeks so it's not that she didn't pick me last time! My ego was intact). When Karen was looking for a good vein she said she was glad that this was my last session.....I didn't have many more pokes left in my left arm. Now, I can't remember if I've talked about this before (chemo brain and all) so if I have just skip to the next paragraph. The reason that they can only use my left arm is that I had some lymph nodes removed from my right arm. So for the rest of my life I cannot get my blood pressure taken on that arm, have an IV inserted, or in general have any kind of trauma or pressure on that arm. These are all precautionary measures to make sure that I do not get lymphodema. Lymphodema is not a super fun thing where fluid would drain to the bottom of my arm (because of the removal of some lymph nodes in the armpit) and it would never drain out resulting in a swollen arm. This is permanent. Obviously, I do not want lymphodema so will be doing everything possible to make sure I don't get it.
Karen looked over my notes from last time, obviously did NOT like that I vomited and said she would take care of me. When I was all settled in my chair in the infusion room, before we started any of the drips, she leaned over and said - would you like some Ativan today? YES PLEASE. She said that it wasn't on Dr Kurup's notes for me today, but she thought I needed it since I threw up last time. I mean, don't we love Karen? We slowed the drip down BIG TIME to make sure I didn't have any reactions (like vomiting). Like super super super slow. My appointment yesterday started at 10:40am and we didn't get out of there until almost 5pm. I took my usual 2 hour snoozer. Again, it was that super light sleep where I could hear everything around me. I woke up around 2pm, I could hear Heather and Bob whispering. Heather had arrived for our last day chemo party and brought some lunch for us. One thing I didn't even think about that Heather mentioned - she said, wow, aren't you glad you made it this whole time without getting a port!!!!!!! Hell yeah I am! Two less surgeries (one to put it in, one to take it out) and no big scar on my chest! Another high five.
Chemo ended FINALLY and I hugged Karen and told her how wonderful she was. Bob had joked that we never wanted to see her again, but Karen and I both agreed we'd love to see each other again....just not in the infusion room :)
Bob and I headed home, pooped and exhausted from the long day.....but both so stoked. LAST CHEMO EVER.
This morning I had an appointment to meet my radiation oncologist. I liked her immediately. She came recommended from Dr Kurup's office. She is just downstairs (in the basement) in St Vincent's, where I used to get my chemo infusions (love to say used to). Her name is Dr. Jeanie Louie, and she is warm, friendly, super smart...she reminded me a lot of my rock star surgeon Dr. Langer. She said she had talked to Dr. Langer this morning about my case (she says hello) and just to get more details than what the medical notes said.
For me she is recommending 7 1/2 weeks of radiation (about 2 more weeks more than "standard"). This is called "boost dose" radation therapy. It would be about 37 doses (or fractions) of radiation instead of 28. Why am I getting more than the standard? For one, I am 34 and she is not just concerned about 10 years out for me (which is the number most doctors talk about), she wants me to live another 50 years with no recurrence. I didn't even set her up for this one, she voluntarily said this. I could have hugged her. She also said because during my surgery in one area they were only able to get 1cm of clean margin when taking out the cancer. 2cms of clean margins is the industry standard. The reason we could only get 1cm in one spot is that there wasn't anything more to take - it was right at the edge of my skin. My surgeon was not concerned about this 1cm clean margin just for this reason (since there was nothing more to take out) but Dr. Louie just wants to be extra cautious. I asked her if there were any addition side effects for going longer (getting the extra boost) and she said only firmer tissue around the scar. That's it? Longer survival and less recurrence and the only side effect is firmer tissue around the scar? Bring it. I told her we weren't in any rush anyway. Although a little piece of me did an internal UGH when I heard 7 weeks instead of 5. This puts us ending around the 1st or 2nd week of November (depending on my start date).
There are a couple of other therapy routines out there that is not recommending for me. They are new(er) and only have data that is 10 or 5 years out and she only wants to give me something that has the numbers to back it with a low recurrence rate 20+ years out. Those other 2 therapies are called the Canadian Treatment (higher doses 2x a day, so less total days under the machine) and Balloon therapy where they actually insert a balloon or catheter inside your breast and give high doses of radiation. This is also called accelerated partial breast irradiation and only takes about 5-7 days. Sounds great right?! Well, they only have data on it for 5 years and since I don't want to make another visit in 5 years, I'm all set on that one.
In terms of start date, they want me to come back in 2 weeks for our "planning session". This is where they make a mold of my body so that when I lay under the radiation machine I cannot move and the radiation will go to the exact TARGETED area that they want it to go. This is important because we are trying to avoid my major organs....like lungs and heart so that I do not have long term damage there. I will also have a CT scan at this appointment in order to determine exact location of the radiation beam.
1 week after that appointment we do a 2nd simulation and if all looks good, then all systems go and we start radiation that day.
Side effects from radiation are mostly localized to the radiation site - sunburn like sensation, general tenderness, swollen boob. They recommend aloe 2x/day to help this, and a mixture of 1 part cornstarch and 1 part baking soda for my "folds" (under the boob, in the armpit) so that there is less friction.
The other side effect that I had been (UGH) dreading is the fatigue. We all know my fatigue level is at an all time high. I don't even remember what it feels like to have energy anymore. But when I asked about this (is the fatigue as bad as chemo) she said that in most patients that they talked to had rated chemo fatigue at a 10 (yeah, tell me about it) and then radiation fatigue at a 2. A two?!?!?! I can do a 2! Now, am I banking on this? No. Most people don't feel like they got into a car wreck with Taxol. Most people don't vomit during chemo. So I'm not gonna believe it until I see it......but I am super stoked that hopefully I will be most people!
The long terms side effects have very low percentage rates attached to them. Less than 2% of the patients get pneumonitis (pneumonia like symptoms in your lungs, another reason to avoid that area). This is treatable with antibiotics. Less than 1% of patients get cancer from the actual radiation.
Now in case you are wondering WHY oh WHY isn't this just all over yet, why are you doing radiation? It is of course, a numbers game and statistics. 30+ years ago they did a study where they took 1,600 women with breast cancer. 1/3 of these women just had a mastectomy, 1/3 just had a lumpectomy, and 1/3 had lumpectomy with radiation. The third that just had mastectomy had a 10% recurrence rate. The 1/3 that just had lumpectomy had a 40% recurrence rate (holy shit). The 1/3 that had lumpectomy and radiation had the same rate as the ladies with the mastectomy - 10%. This was a total game changer for cancer (obviously) since 30+ years ago if you had breast cancer, they would almost always recommend going the distance and removing one if not both breasts.
So, now I start my 3 week "rest" where I heal and get my numbers up and just in general give my body a rest. I'm ready for it, but I'm also ready to start radiation STAT and kinda wish we could get it over with.
Today I am feeling good...I have all sorts of what I call "fake energy" from the steroids. I know that I will start to wind down soon...tomorrow and Sunday will be no picnic. But guess what? This is the last time I will have to feel like this ever so BRING. IT. ON.
Friday, August 26, 2011
Thursday, August 25, 2011
the other side
I have turned the corner, rounded the bend, I am closer to the other side of the river......the end of chemo is almost here, and it feels goooooooooooooooood. The past couple weeks have been (dare I say it?) *good*. It's been good physically (no pain in the last round after chemo!) but the best part is that it has been good emotionally too. I can't remember the last time I have had a dark moment. The dark moments used to be very common in the beginning, hiding in the shadows, ready to leap out at the first sign of physical pain or trauma. Just yesterday Bob asked me if I ever had thoughts of recurrence. You bethca. That's all those dark moments were. It wasn't the thought that I couldn't get through this round....it was the thought that there might be another round. Or *gulp* worse.....that I wouldn't make it through another round. That is the darkest moment. And yes I visited that place, fairly regularly, in the first few months. Would I see Thomas learn how to ride a bike? Learn how to drive a car? Be able to hold his babies? Because as positive as we all are that YES we are getting it all out and YES this was the right decision to go through this crazy intense pain they call chemo, after it is all said and done - chemo and radiation and then 5 years of drugs....they still can't give me a 0% recurrence rate. The scariest part is that the only numbers they can give me only go ten years out. Ten years?! Ten years from now Thomas is just getting braces. Ten years from now Thomas is just starting middle school. That's not far enough out for me. But because I am so young and cancer is not common in your 30s, they just don't have numbers for what happens to people like me 20, 30, 40, 50 years from now. And sorry, but I was kinda planning on being here 50 years from now.
Now, I know what you are thinking...no one has a guarantee for another 50 years. You could get hit by a bus tomorrow; collapse from an unknown heart arrhythmia; trip and fall and hit your head. But do you actually think about those things? Do those things keep you up at night? If they do, then you are on the same side of the glass as me - the other side. I didn't used to be on the other side of the glass. I used to think that life was fair and things happened for a reason. And yes, I had my share of shitty things happen to me....broken heart, losing a job, betrayal of a good friend. But those are the normal shitty things in life. At the time you feel like your life is over...but then you start to heal and reflect and realize that better things came out of those tough times. But once you get news that YOU have cancer, and it's invasive and you have a high risk of recurrence......swooooooosh, all the sudden you are on the other side of the glass, nose pressed up, looking over to the side that you used to be on.....where bad things like that didn't happen.
I know a few people on the other side of the glass with me. They lost people in their lives, important important people, when it was far too early to lose them. On this side of the glass we know that life isn't fair. Monsters exist. And sometimes really shitty things happen to good people. For no reason. And for those of you that will say - oh you will find the silver lining on why cancer happened to you! I am sorry, but no I will probably not. I was not one of those people that didn't appreciate life. I was one of those people that appreciated every moment of my wonderful life and my loving husband and my awesome family and my healthy baby.....and even small moments like a wonderful sunset or time alone in the car on the commute to catch up with friends over the phone. I was a glass half full kind of girl. But this cancer....even if it doesn't come back, the permanent damage I am doing to my body right now....the only silver lining there is that at least we are trying to make sure it doesn't come back. Chemo is very toxic....so toxic that the exact chemo I am getting, even if cancer comes back, they won't give me this exact chemo again because it would actually do more damage than good. That is what we are doing right now....trying to kill as much cancer as possible without too much permanent damage to my body (mostly my heart).
I don't love being on this side of the glass. I wish I didn't know that monsters exist and dark moments are hiding in every shadow. But for NOW for TODAY I am in the sun, no dark moment is lurking. I am feeling strong....I am feeling happy....and I am hopefully hopefully hopefully one Dr's visit away from never having chemo again.
There is still hope and love and happiness and good moments on this side. Some days it's harder to find. But it's there. And it feels just as good when you find it....maybe even better than it did before. It feels precious.
I had a lot of good moments these past couple weeks. My good friend came up to visit me from San Francisco. She arrived last Thursday...and I was so scared because on Tuesday and Wednesday I was so so so tired and getting more tired by the day. What is happening?! I am supposed to feel BETTER as the days pass...not more tired. Both Bob and my Mom told me to take the steroids but I felt like that would just give me a false sense of energy. But then Thursday came, I was freaked that I would be too tired for the visit, so I took them in the morning. And the visit ended up energizing me so much that I didn't need to take them again and felt great the entire time! We went to the beach (of course) and it was 80 degrees...at the beach. This is rare...like once a year rare. We couldn't have planned it better.
Two days ago we spent the day at a golf tournament to raise money for cancer research. My cousin runs a non-profit (http://parforlife.org/) that funds prostate cancer research. Cancer has been a big part of our families lives unfortunately. My uncle, his father, passed away from a long battle with prostate cancer 2 years ago. My cousin has run this non-profit ever since, which joins his love for golf with raising money for prostate cancer research. My uncle had started this particular tournament after his diagnosis with prostate cancer and we have attended every year. For the last few years, while living in San Francisco, Bob and I would fly up to play (or while I had Thomas, just volunteer to help). It's a fun event and one that we look forward to every year.
This year "our team" for golf was my dad, Bob, my brother and my soon to be brother in law (my sister's fiance). My mom, my sister and I showed up to volunteer and help (although I will admit we didn't too all that much except drink ice tea in the country club!). My sister did the flowers (you can see her past flower arrangements and all her worldly talent at her blog! http://ahousemouse.blogspot.com) It was a fun day. We hung out as the boys golfed, which is followed by cocktail hour then a dinner. This year was different because it was linked up with a ladies group from the golf club (called "In the Pink") to combine raising money for both prostate cancer and breast cancer. So of course, when I showed up, bald, all the ladies from In the Pink were all over me....and were so sweet and gracious and told me that they loved seeing me because this is why they work so hard to raise money.
At one point, before the boys were back from the round, before the cocktail hour, one of the ladies in the pink said she wanted me to meet someone. I assumed she wanted me to meet one of the doctors that they raise money for. But when she introduced me, it was the auctioneer for the live auction that night. Uh oh....I saw where this was going. They want to raise a lot of money (of course!) and here I am - bald - and wearing a flashing neon sign that says I have breast cancer. So the auctioneer starts explaining how the live auction is going to work tonight during dinner and how they want to raise as much money as possible. Uh huh. And how in one part of the program they ask all the cancer survivors to stand up so that everyone can see how many people cancer affects. Uh huh. And then that is when the big money donations start....and would you mind saying "who would like to start the bidding at one thousand dollars!". Uh uh. Sorry I had to turn it down. First of all, I don't love public speaking. Never have. But public speaking while bald? I mean, I know I may seem all brave going out into the public bald, but I am not one to try and draw attention to myself while doing this. It just wasn't happening. The auctioneer was very sweet, and of course sweetly asked again if I would speak at all. Uh uh. Sorry. But I did say, well if you want to, you can point me out to try and get more money...but I really don't want to talk.
So the night goes on, first cocktail hour, then dinner. The live auction starts. I start to get a tiny bit nervous (what did I just open myself up to? what is this guy gonna say?). But about an hour goes by into the auction and I start to relax a little more. Then the auctioneer says that he wants to acknowledge someone special, someone who is going through treatment right now. (GULP) Is Molly here? I raise my hand. He is very sweet and talks a little bit about how life is a circle, how my Uncle Tom passed away and now I have a son named after him (this is all kinda a blur, I can't remember what else he was saying because at this point everyone in the room is staring at me which is a little intense and I just have a smile pasted on my face which I am hoping looks genuine and not deer in headlights). And then....he asks everyone to give me a round of applause for going through treatment and still coming out today (or something like that. again, kinda a blur). So people start to clap, and then some people start to get up, and then before you know everyone in the room is standing up and cheering and clapping and saying words of encouragement and every eye I meet is full of warmth and love and wow......it was overwhelming in a totally good way. There were about 200 people there all standing and sending me the most positive loving energy. I didn't even know what to do. I wanted to cry (I held back, not a big public crier), I wanted to go around and hug everyone, but I just sat there and soaked it all in (I will admit, I felt a little paralyzed). It was a wonderful loving moment, one that I definitely would not have chosen since did I mention before I hate being the center of attention? But nonetheless, a wonderful moment where I felt special and really really good. So now I pretty much know what it feels like to get a standing ovation at the Oscars for the lifetime achievement awards. I swear it felt like that. And all I did was go through chemo....
And to continue the good moments from this past week.....last night we went to an old friends house for a BBQ. She was one of my BFFs in high school & college and we had lost touch with each other over the last 12 years. I have missed her and thought about her often and I am so happy that we are back in touch. We sat in their backyard, on an amazingly warm night, the kids rolled around and played in the grass and dipped in the kiddie pool. The adults sat around and drank and laughed and told stories. It was so normal and fun and nice. And the perfect way to spend chemo eve.
Oh yeah, did I mention? LAST. CHEMO. (I'm going to go ahead and say) EVER. in just a couple hours. Wish me luck.....
Now, I know what you are thinking...no one has a guarantee for another 50 years. You could get hit by a bus tomorrow; collapse from an unknown heart arrhythmia; trip and fall and hit your head. But do you actually think about those things? Do those things keep you up at night? If they do, then you are on the same side of the glass as me - the other side. I didn't used to be on the other side of the glass. I used to think that life was fair and things happened for a reason. And yes, I had my share of shitty things happen to me....broken heart, losing a job, betrayal of a good friend. But those are the normal shitty things in life. At the time you feel like your life is over...but then you start to heal and reflect and realize that better things came out of those tough times. But once you get news that YOU have cancer, and it's invasive and you have a high risk of recurrence......swooooooosh, all the sudden you are on the other side of the glass, nose pressed up, looking over to the side that you used to be on.....where bad things like that didn't happen.
I know a few people on the other side of the glass with me. They lost people in their lives, important important people, when it was far too early to lose them. On this side of the glass we know that life isn't fair. Monsters exist. And sometimes really shitty things happen to good people. For no reason. And for those of you that will say - oh you will find the silver lining on why cancer happened to you! I am sorry, but no I will probably not. I was not one of those people that didn't appreciate life. I was one of those people that appreciated every moment of my wonderful life and my loving husband and my awesome family and my healthy baby.....and even small moments like a wonderful sunset or time alone in the car on the commute to catch up with friends over the phone. I was a glass half full kind of girl. But this cancer....even if it doesn't come back, the permanent damage I am doing to my body right now....the only silver lining there is that at least we are trying to make sure it doesn't come back. Chemo is very toxic....so toxic that the exact chemo I am getting, even if cancer comes back, they won't give me this exact chemo again because it would actually do more damage than good. That is what we are doing right now....trying to kill as much cancer as possible without too much permanent damage to my body (mostly my heart).
I don't love being on this side of the glass. I wish I didn't know that monsters exist and dark moments are hiding in every shadow. But for NOW for TODAY I am in the sun, no dark moment is lurking. I am feeling strong....I am feeling happy....and I am hopefully hopefully hopefully one Dr's visit away from never having chemo again.
There is still hope and love and happiness and good moments on this side. Some days it's harder to find. But it's there. And it feels just as good when you find it....maybe even better than it did before. It feels precious.
I had a lot of good moments these past couple weeks. My good friend came up to visit me from San Francisco. She arrived last Thursday...and I was so scared because on Tuesday and Wednesday I was so so so tired and getting more tired by the day. What is happening?! I am supposed to feel BETTER as the days pass...not more tired. Both Bob and my Mom told me to take the steroids but I felt like that would just give me a false sense of energy. But then Thursday came, I was freaked that I would be too tired for the visit, so I took them in the morning. And the visit ended up energizing me so much that I didn't need to take them again and felt great the entire time! We went to the beach (of course) and it was 80 degrees...at the beach. This is rare...like once a year rare. We couldn't have planned it better.
Two days ago we spent the day at a golf tournament to raise money for cancer research. My cousin runs a non-profit (http://parforlife.org/) that funds prostate cancer research. Cancer has been a big part of our families lives unfortunately. My uncle, his father, passed away from a long battle with prostate cancer 2 years ago. My cousin has run this non-profit ever since, which joins his love for golf with raising money for prostate cancer research. My uncle had started this particular tournament after his diagnosis with prostate cancer and we have attended every year. For the last few years, while living in San Francisco, Bob and I would fly up to play (or while I had Thomas, just volunteer to help). It's a fun event and one that we look forward to every year.
This year "our team" for golf was my dad, Bob, my brother and my soon to be brother in law (my sister's fiance). My mom, my sister and I showed up to volunteer and help (although I will admit we didn't too all that much except drink ice tea in the country club!). My sister did the flowers (you can see her past flower arrangements and all her worldly talent at her blog! http://ahousemouse.blogspot.com) It was a fun day. We hung out as the boys golfed, which is followed by cocktail hour then a dinner. This year was different because it was linked up with a ladies group from the golf club (called "In the Pink") to combine raising money for both prostate cancer and breast cancer. So of course, when I showed up, bald, all the ladies from In the Pink were all over me....and were so sweet and gracious and told me that they loved seeing me because this is why they work so hard to raise money.
At one point, before the boys were back from the round, before the cocktail hour, one of the ladies in the pink said she wanted me to meet someone. I assumed she wanted me to meet one of the doctors that they raise money for. But when she introduced me, it was the auctioneer for the live auction that night. Uh oh....I saw where this was going. They want to raise a lot of money (of course!) and here I am - bald - and wearing a flashing neon sign that says I have breast cancer. So the auctioneer starts explaining how the live auction is going to work tonight during dinner and how they want to raise as much money as possible. Uh huh. And how in one part of the program they ask all the cancer survivors to stand up so that everyone can see how many people cancer affects. Uh huh. And then that is when the big money donations start....and would you mind saying "who would like to start the bidding at one thousand dollars!". Uh uh. Sorry I had to turn it down. First of all, I don't love public speaking. Never have. But public speaking while bald? I mean, I know I may seem all brave going out into the public bald, but I am not one to try and draw attention to myself while doing this. It just wasn't happening. The auctioneer was very sweet, and of course sweetly asked again if I would speak at all. Uh uh. Sorry. But I did say, well if you want to, you can point me out to try and get more money...but I really don't want to talk.
So the night goes on, first cocktail hour, then dinner. The live auction starts. I start to get a tiny bit nervous (what did I just open myself up to? what is this guy gonna say?). But about an hour goes by into the auction and I start to relax a little more. Then the auctioneer says that he wants to acknowledge someone special, someone who is going through treatment right now. (GULP) Is Molly here? I raise my hand. He is very sweet and talks a little bit about how life is a circle, how my Uncle Tom passed away and now I have a son named after him (this is all kinda a blur, I can't remember what else he was saying because at this point everyone in the room is staring at me which is a little intense and I just have a smile pasted on my face which I am hoping looks genuine and not deer in headlights). And then....he asks everyone to give me a round of applause for going through treatment and still coming out today (or something like that. again, kinda a blur). So people start to clap, and then some people start to get up, and then before you know everyone in the room is standing up and cheering and clapping and saying words of encouragement and every eye I meet is full of warmth and love and wow......it was overwhelming in a totally good way. There were about 200 people there all standing and sending me the most positive loving energy. I didn't even know what to do. I wanted to cry (I held back, not a big public crier), I wanted to go around and hug everyone, but I just sat there and soaked it all in (I will admit, I felt a little paralyzed). It was a wonderful loving moment, one that I definitely would not have chosen since did I mention before I hate being the center of attention? But nonetheless, a wonderful moment where I felt special and really really good. So now I pretty much know what it feels like to get a standing ovation at the Oscars for the lifetime achievement awards. I swear it felt like that. And all I did was go through chemo....
And to continue the good moments from this past week.....last night we went to an old friends house for a BBQ. She was one of my BFFs in high school & college and we had lost touch with each other over the last 12 years. I have missed her and thought about her often and I am so happy that we are back in touch. We sat in their backyard, on an amazingly warm night, the kids rolled around and played in the grass and dipped in the kiddie pool. The adults sat around and drank and laughed and told stories. It was so normal and fun and nice. And the perfect way to spend chemo eve.
Oh yeah, did I mention? LAST. CHEMO. (I'm going to go ahead and say) EVER. in just a couple hours. Wish me luck.....
Sunday, August 14, 2011
the good, the bad and the ugly
This last week was not an especially good one...nothing awful happened, but let's just say I am glad to be nearing the end. My "good" week only lasted a whopping three days. Thursday, Friday and Saturday I felt great! Tired, but healthy and feeling good overall. Then Sunday afternoon hit and you could not peel me off the floor. I was exhausted....and getting the tell tale signs of coming down with something - the aches, the chills....and a fever. It was only 99.8, so not time to call the Dr yet. I downed some C monster, snuggled into bed early and crossed my fingers that I would not feel worse the next day. Which I didn't...but I didn't feel any better either when Monday rolled around. After laying in bed all morning, I finally took my temperature at noon. 100.3. Shit. The Dr's office generally wants to know when you are around 100.5...and I wasn't there yet.....but they were always telling me I didn't call when I should so I decided to be a good girl and let them know and see what they wanted me to do. I left a message and nurse Julie called me back, and was consulting with a doctor while talking to me. Well....they didn't know what to do with me. They were not thrilled at the fever, but they didn't want to drag me in to run the numbers on my blood if this turned out to just be a side effect from the Neulasta shot (the white blood cell booster that I get the day after chemo. Yes, 7-10 days later you can get side effects from Neulasta. It is not my favorite shot. Not only does it make me feel like garbage, but it's over $600 out of pocket every time I get this shot. I have done the math. I could have a Chanel purse by now. I'd rather have a Chanel purse). Julie asked some more questions (how do you feel? like garbage. Can you still eat? yes) The fact that I could still eat made them happy, so Julie told me to take some tylenol and see if the fever goes away. If it doesn't go away, call them back. If it comes back tomorrow, call them back. If I feel worse at all at any point - call them back! Ok ok ok. I asked at what point did the fever have to get to in order for them to be concerned. She said anything over 100.8. Ok. Popped a couple tylenol, hopped in bed. And because I am obsessive I took my temperature 15 minutes later. 101 degrees. shit shit shit. Ok, the tylenol just hasn't kicked in right? Not calling yet. 15 minutes later....100.8 degrees. shit. Ok, not calling until it's been a FULL hour. An hour later, 100.3. Ok, phew going in the right direction. Two hours later it was back to normal 98.6. Crisis averted. It came back later that night, hovered at 100.6 (just high enough to make me nervous all night) and then *poof* at 11pm it vanished. So Tuesday, no fever...but just wiped from the last couple of fever days. And then it was Wednesday and I was feeling better.....but it was WEDNESDAY .....already. Crap, how did that happen so fast? So all I day Wednesday I ended up dreading Thursday - chemo day.
Chemo day started out normal enough. Bob was traveling so it was just my mom and I. I had almost convinced my mom to just drop me off, the nurses take such good care of me and all I do these days is sleep during the infusion - what lousy company. But as we were driving there for out 9am appointment she said, no I am coming in...it makes me feel better to be with you. Plus, I know she worries that something may happen and she likes to be there to make sure I am ok. Moms have a sixth sense I tell you. I was happy that she came.
We did not see Dr Kurup this time. Instead we met with the head nurse practitioner, Erin. I like Erin a lot, I have met with her before. She is smart, warm and very straight forward. We talked about my initial signs if peripheral neuropathy. I have mild symptoms in my left foot (and sometimes leg). It comes and goes and feels tingly like my foot is asleep. Erin was happy that it comes and goes - she said this typically means that it is not permanent and would go away after chemo. She said that the people they get concerned about are the ones where the symptoms come on strong and stay strong. We talked about my fever - most likely just Neulasta side effects. We talked about how this round was much much easier than last round (in terms of pain) and she was thrilled the steroids were working out so well. My numbers looked good (white blood cell count 5, platelets a little over 100) and so we were cleared to go. Off to the infusion room....
As usual, started out with benadryl....and zzzzzzzzzzzz. I heard Lina, my chemo nurse come over and switch out the bags once the benadryl was done. On to anti-nausea and steroids. Then about a half hour later I heard her come over and switch out the bag with Taxol. I don't know how far in I got, but I started to feel nauseous. I opened my eyes, asked my mom to get me some ginger ale. "Are you not feeling good?" I don't know....I don't know. She came back with ginger ale, I sipped some, closed my eyes again and willed the nausea to go away. It wasn't. It was all the sudden getting worse. Oh no oh no oh no.....I popped up, frantically tried to un-recline my chair and said "Mom, TellThemToStopTheDrip, TellThemToStopTheDrip!!!!!!!!!!!!!" She was frantically ringing the bell, trying to find a nurse. I was saying "stop the drip", but what I meant was I think I'm going to throw up. Which I did. In the wastebasket in front of me. Three times.
Lina came over, stopped the drip, whisked the wastebasket away, and plopped a cold wet washcloth directly on my head. And let me tell you, I love a wet washcloth when I am not feeling good....and now I am forever spoiled because normally (with hair) I have only put one on my forehead or the back of my neck. But when you can plop directly on your bald head....heaven.
My mom asked Lina to get Dr Kurup. She came out moments later, rubbed my back and was sympathetic....and gently said I am so sorry but we have to keep going, we will slow the drip down even more this time. I looked up to the taxol bag and we had barely made a dent. Lina got more anti-nausea drugs, told me they would make me sleepy, injected it directly into my IV and I was OUT. I don't even know how long I racked out for, but it was 1pm when I finally opened my eyes. My mom was still by my side and I knew she didn't want to leave me, but I also knew she must be hungry. I said I was feeling better and maybe we should eat some lunch? She went downstairs, picked up a couple sandwiches and I stayed awake the rest of time and we chatted. It was 3pm when we were done. We were both a little tired and both a little traumatized. As my mom told me later - no mother likes to see their baby get poisoned and then throw up.
Fortunately, it has only been up from there. It's now Sunday night, still no pain (knock on wood). I woke up this morning and felt like it started to creep in, but steriods+advil seem to do the trick to knock it back. I am tired....but definitely not as wiped as last time, so crossing my fingers that the rest of the week will just get better and I won't have to dip into the vicodin.
So obviously, the above stories were "the bad" and the "the ugly". Onto "the good"....
Last Saturday, during my brief "good week", Bob, Thomas and I were out and about for the day. It felt good to get out...nothing too exciting, just bummed around, ate lunch out, shopped. We were in a clothing store and this one store associate kept coming up to me. Can I help you find anything? Can I start you a fitting room? Are you finding everything ok? The last time she came up she was babbling a little, talking fast...a little nervous. "So, I have a funny story for you...well not funny so much, but um.........so my mom started chemo last Thursday...." she stopped, her eyes started to well up. I grabbed her arm, gave it a squeeze. She gathered herself and continued. "And, well I just wanted to tell you that it makes me feel so much better to see you ...out and looking....strong". I asked her how her mom was doing. She said not good, she hasn't been able to get out of bed yet. I told her that my first treatment was my worst and that the first 4-5 days were the hardest, but after that I always felt better and if her mom wasn't feeling better she should call the doctors because there is so much they can do to make her more comfortable. She nodded enthusiastically, said she would do that, thanked me and said again it made her feel better to see me out and about and that it made her realize her mom would be ok.
Bob was watching this exchange from across the room but didn't hear what we were talking about. When we got outside I told him what she said. He said, "wow - that must make you feel really good...you are an inspiration." And you know what? It did make me feel really good. These past four months I have only felt like a burden.....one more worry to add onto my family's life. I never thought I would make someone else feel better just by being out and about...and bald.
When I started going out bald I didn't do it for a fashion statement, or a political statement or any kind of statement. I just happen to be bald right now and if my husband still loves me, and my baby still loves me and my family still loves me....well then what do I care what a bunch of random strangers think when they see me? If anything I thought that people would avoid me, or think I looked like a freak, or just pity me. I never ever ever thought it would make someone feel better. So for the hundred people that see me and think I am a freak- if just one person sees me and thinks "my mom is going to be ok" or my girlfriend or my sister or my best friend....well, doesn't it make it all worth it?
You couldn't wipe the grin off my face for the rest of the day. I held my bald head high.
So that was my good moment. I've wrapped it up, put it into my pocket and am savoring it.
Oh, and P.S. - ONE. MORE. TREATMENT. TO GO.
Chemo day started out normal enough. Bob was traveling so it was just my mom and I. I had almost convinced my mom to just drop me off, the nurses take such good care of me and all I do these days is sleep during the infusion - what lousy company. But as we were driving there for out 9am appointment she said, no I am coming in...it makes me feel better to be with you. Plus, I know she worries that something may happen and she likes to be there to make sure I am ok. Moms have a sixth sense I tell you. I was happy that she came.
We did not see Dr Kurup this time. Instead we met with the head nurse practitioner, Erin. I like Erin a lot, I have met with her before. She is smart, warm and very straight forward. We talked about my initial signs if peripheral neuropathy. I have mild symptoms in my left foot (and sometimes leg). It comes and goes and feels tingly like my foot is asleep. Erin was happy that it comes and goes - she said this typically means that it is not permanent and would go away after chemo. She said that the people they get concerned about are the ones where the symptoms come on strong and stay strong. We talked about my fever - most likely just Neulasta side effects. We talked about how this round was much much easier than last round (in terms of pain) and she was thrilled the steroids were working out so well. My numbers looked good (white blood cell count 5, platelets a little over 100) and so we were cleared to go. Off to the infusion room....
As usual, started out with benadryl....and zzzzzzzzzzzz. I heard Lina, my chemo nurse come over and switch out the bags once the benadryl was done. On to anti-nausea and steroids. Then about a half hour later I heard her come over and switch out the bag with Taxol. I don't know how far in I got, but I started to feel nauseous. I opened my eyes, asked my mom to get me some ginger ale. "Are you not feeling good?" I don't know....I don't know. She came back with ginger ale, I sipped some, closed my eyes again and willed the nausea to go away. It wasn't. It was all the sudden getting worse. Oh no oh no oh no.....I popped up, frantically tried to un-recline my chair and said "Mom, TellThemToStopTheDrip, TellThemToStopTheDrip!!!!!!!!!!!!!" She was frantically ringing the bell, trying to find a nurse. I was saying "stop the drip", but what I meant was I think I'm going to throw up. Which I did. In the wastebasket in front of me. Three times.
Lina came over, stopped the drip, whisked the wastebasket away, and plopped a cold wet washcloth directly on my head. And let me tell you, I love a wet washcloth when I am not feeling good....and now I am forever spoiled because normally (with hair) I have only put one on my forehead or the back of my neck. But when you can plop directly on your bald head....heaven.
My mom asked Lina to get Dr Kurup. She came out moments later, rubbed my back and was sympathetic....and gently said I am so sorry but we have to keep going, we will slow the drip down even more this time. I looked up to the taxol bag and we had barely made a dent. Lina got more anti-nausea drugs, told me they would make me sleepy, injected it directly into my IV and I was OUT. I don't even know how long I racked out for, but it was 1pm when I finally opened my eyes. My mom was still by my side and I knew she didn't want to leave me, but I also knew she must be hungry. I said I was feeling better and maybe we should eat some lunch? She went downstairs, picked up a couple sandwiches and I stayed awake the rest of time and we chatted. It was 3pm when we were done. We were both a little tired and both a little traumatized. As my mom told me later - no mother likes to see their baby get poisoned and then throw up.
Fortunately, it has only been up from there. It's now Sunday night, still no pain (knock on wood). I woke up this morning and felt like it started to creep in, but steriods+advil seem to do the trick to knock it back. I am tired....but definitely not as wiped as last time, so crossing my fingers that the rest of the week will just get better and I won't have to dip into the vicodin.
So obviously, the above stories were "the bad" and the "the ugly". Onto "the good"....
Last Saturday, during my brief "good week", Bob, Thomas and I were out and about for the day. It felt good to get out...nothing too exciting, just bummed around, ate lunch out, shopped. We were in a clothing store and this one store associate kept coming up to me. Can I help you find anything? Can I start you a fitting room? Are you finding everything ok? The last time she came up she was babbling a little, talking fast...a little nervous. "So, I have a funny story for you...well not funny so much, but um.........so my mom started chemo last Thursday...." she stopped, her eyes started to well up. I grabbed her arm, gave it a squeeze. She gathered herself and continued. "And, well I just wanted to tell you that it makes me feel so much better to see you ...out and looking....strong". I asked her how her mom was doing. She said not good, she hasn't been able to get out of bed yet. I told her that my first treatment was my worst and that the first 4-5 days were the hardest, but after that I always felt better and if her mom wasn't feeling better she should call the doctors because there is so much they can do to make her more comfortable. She nodded enthusiastically, said she would do that, thanked me and said again it made her feel better to see me out and about and that it made her realize her mom would be ok.
Bob was watching this exchange from across the room but didn't hear what we were talking about. When we got outside I told him what she said. He said, "wow - that must make you feel really good...you are an inspiration." And you know what? It did make me feel really good. These past four months I have only felt like a burden.....one more worry to add onto my family's life. I never thought I would make someone else feel better just by being out and about...and bald.
When I started going out bald I didn't do it for a fashion statement, or a political statement or any kind of statement. I just happen to be bald right now and if my husband still loves me, and my baby still loves me and my family still loves me....well then what do I care what a bunch of random strangers think when they see me? If anything I thought that people would avoid me, or think I looked like a freak, or just pity me. I never ever ever thought it would make someone feel better. So for the hundred people that see me and think I am a freak- if just one person sees me and thinks "my mom is going to be ok" or my girlfriend or my sister or my best friend....well, doesn't it make it all worth it?
You couldn't wipe the grin off my face for the rest of the day. I held my bald head high.
So that was my good moment. I've wrapped it up, put it into my pocket and am savoring it.
Oh, and P.S. - ONE. MORE. TREATMENT. TO GO.
Friday, August 5, 2011
Taxol - round 2
First off, the "extra" week off from chemo was awesome. I felt stronger, healthier, more rested every day. Dr Kurup said that this would be a nice preview of what's to come for my last chemo (coming up in just 3 weeks!). For my bonus time, we went to the beach...the weather was spectacular - warm, breezy, sunny. We even had s'mores by a fire on the beach under a thick blanket of stars at night. Perfect.
Good thing I was feeling so strong that week...because my normally easy breezy Thomas decided to be in a funk. Bob was traveling (his missed his Daddy), new teeth were coming in (ouch), and he is growing like a weed so I am sure his bones hurt (I feel you there kiddo). Every night he cried and cried and cried when I put him to sleep. This is not the norm. And while I am constantly thanking the decision to have moved in with my parents for help, that week made it ever more apparent that it was a necessity. On night 2 of crying, rocking, crying, rocking, crying, he finally fell asleep....only to wake up again a half hour later howling. This was a first. I came into his room and he had thrown up in his sleep. He was hysterical. I swooped him up and yelled for my Mom for help since Bob was gone. How do you comfort a hysterical baby and clean up vomit at the same time? Gigi (aka Grandma, my Mom) and I took turns holding and soothing while the other person cleaned up the mess. 20 minutes and one set of pajamas and changed bedsheet later, I was rocking him back to sleep. But even though he was soothed, he just couldn't get comfortable...constantly shifting and squirming in my arms. 45 minutes later....vomit #2, this time all over me. Yelled again for Gigi, round 2 of soothing hysterical (and now exhausted) baby while the other person cleaned up the mess. Another set of clean PJs (and me now in a bathrobe), back to rocking him to sleep. This time he fell asleep (more like passed out), but I rocked him and soothed him 20 minutes past him falling asleep to make sure there wasn't another incident. It was now 10pm, I was exhausted...and thanking god that we lived with my parents because I don't know how I could have done that alone while going through chemo.
I will say though that the one good thing about rocking a 25lb squirming crocodile to sleep every night is that you get ROCKED arms. Baby boot camp was good for my upper body. Too bad it didn't work my abs out too.
Of course the lovely extra week went by in a FLASH and it was chemo day before I knew it. I didn't have my usual ohmygodIamgoingtovomit feeling when I woke up so I skipped the ativan. But once we got 2 blocks from the hospital that morning the panic hit me hard and I had to fight the urge to jump out at the stoplight. This is a first for me...I can usually "talk" myself out of panic situations...reason with myself. These rushes of panic before chemo cannot be tampered by any of amount of reassuring. It feels like a panic attack and my eyes dart around looking for an escape.
Everything went as usual....check in, weigh in, wait for chemo nurse. But this time when I looked down at my wristband to look for "Karen" written in, it said "Liz". Wait a minute. No Karen? I will be completely honest...I was heartbroken and took it personally. You see, here is the deal with the nurses - they actually request which patients they get. The day before they look at the appointment book together and it's like draft day, they choose the patients they want to work with. It was no coincidence that I had Karen time and time again...she was choosing me. And now it felt like rejection - why didn't Karen choose me this time? I tried to shake it off (it felt so silly being upset that "my" chemo nurse didn't choose me) and made excuses (maybe she wanted me to have someone else...get variety...it's not me it's you....) but it was just a farce. I wanted Karen.
Liz showed up and she looked all of 22 (she just looked really young...I found out later she is my age and has been working with these doctors for the last 8 years). And even though she had the deck stacked against her because all I wanted was the comfort of a nurse I knew, Liz was wonderful. It's no surprise....all of the nurses there are wonderful. They all love working with each, love the doctors, the doctors love them...and it shows. They all used to work together at another clinic and then when Providence opened this clinic in St Vincent's hospital 3 years ago, the entire staff moved over. In the 8 years that they have all worked together (at the last clinic and now this one) there has only been one person to turn over for the ENTIRE OFFICE (this includes front desk, medical assistants, doctors, etc). It's a big office and they are proud of the fact that they are a tight family. And having come from a tight work family myself, I snuggled right in to this new environment.
We did the usual with Liz (new symptoms, how did the last round go, blah blah blah). Then search for a good vein time (she was really good *and gentle* and found one easily). Then send the blood off to run the numbers and wait for Dr Kurup.
The numbers came back (199 platelet count - up from 72 last time....really good!) and I was cleared for chemo this round. But before we went back to the infusion room we talked about my last round and how brutal is was on me. Dr Kurup said that I had an "extreme" reaction to Taxol - both in administering it (allergic reaction) and the side effects (felt like I was in a car wreck). We bargained back and forth about how much drugs I should take and when (I am always for less, she is always for more since she wants me comfortable) and ended up on a compromise where instead of taking the prescribed steroids twice a day, I could start out by just taking it once a day in the morning and see if that works. The reason I hate taking steroids is that I can't sleep at night. And so with this compromise we were thinking that maybe if I just took one in the morning, I could make it to bed time pain free and then be able to just take vicodin for the pain which could also double as a sleep aid. But Dr Kurup made it very clear that if needed to, I could take all 3 prescriptions at night at the same time - the steroid, vicodin for pain relief AND an ambien to fall asleep. Sounds like a pretty jacked up cocktail right? I hoped I didn't have to resort to this.
We went back to the infusion room, got all set up in our chairs (turned them around to face the windows) and settled in like we were getting pedicures. Because of the allergic reaction last time, they set me up with 50mg of Benadryl (last time it was 25mg in the beginning) and zzzzzzzzzzzzzzzzzzzzzzzzz I slipped away. You know when you are on an early morning flight and you close your eyes and you are convinced you didn't fall asleep because you can hear snippets of conversation around you, and the bar cart going by, and the stewardesses talking to the row in front of you.....and then what feels like 5 minutes later the captain comes on and says to prepare for landing and you are like whoa what just happened to the last 45 minutes? That is how sleeping in chemo feels like. I was convinced I didn't fall asleep...just resting my eyes....then I would open them again and my mouth would be hanging wide open, my phone had 3 missed calls and a text message and the clock had somehow moved forward a full hour. Huh? So it went like that for the rest of chemo. My Mom had to leave towards the end for an appointment, so Heather swooped in with lunch, we chatted and ate our burritos and then next thing you know it was all over. My Dad picked me up, took me to my acupuncture appointment with Ella, then back home in time for dinner with Thomas.
**side note - when we went to the infusion room, I saw Karen. I tried to play it cool, but ended up waving like a 3rd grader and mouthing hello enthusiastically. She was not in the normal nurse uniform (white coat) and was just in street clothes. She came over, held my arm and apologized because she was on phone duty today (one nurse gets assigned to handle the medical calls that come in during the day). Phew...she didn't reject me...she was just on phone duty. **
The next few days were much much much better than last time. I took my steroid pill in the morning, the pain was only lingering and minimal. On Saturday I did end up taking 2 pills, one in the morning and one in the afternoon...the pain had started to creep up. Of course sleep was completely elusive the first 4 or 5 nights...even with vicodin AND ambien I would just lie there, toss and turn all night...completely awake by 3am. It gets better every night (restless sleep till 4am, then the next night till 5am, then the next night till 6am.....). And for this round that was probably the worst of the symptoms - no sleep. The pain was manageable. It's a very unique pain, I imagine it kinda feels like extreme arthritis? It's a throbbing swelling sensation in your joints. The result is that you feel extremely fragile. I walk around like an 85 year old the first few days. I feel like my glass knees may break off like the bad guy in the Terminator movie when he gets exposed to liquid nitrogen.
So overall, Taxol round 2 has been the easiest so far. Of course, what they did warn was by this time the "cumulative fatigue" has built up. Before I had started chemo the doctors threw this phrase around a lot...cumulative fatigue. At the time, all I thought it meant was "really tired" and I thought, well tired I can do...I know tired. I've been tired for 2 years - first pregnant tired, then newborn breastfeeding mother tired, then working breastfeeding mother of a baby that doesn't sleep through the night tired....please, how much more tired can chemo make you? I was pretty sure no one could be more tired than a working breastfeeding non-sleeping mother.
Ok, since I have now experienced both I can tell you that they are like comparing apples and oranges. It's a totally different feeling. This must be why they don't call it "cumulative tired"....because fatigue does not feel like tired. When you are tired (even breastfeeding working not sleeping tired) you can still function, albeit retardely...but you can still drive your car, carry a (retarded) conversation, work, feed yourself, etc. When you are "tired" you can rest and feel better. Fatigue....not so much. Fatigue is like being completely out of gas. Nothing in the tank. Can't move. Don't want to. Too tired to walk over to the couch, might as well just lie down right here on the floor. And lay there for a while. This is not an exaggeration, you can find me on the floor often. Good thing my parents have carpet. Of course these are the days when I actually get out of bed. I spend a lot of time in bed.
The extra week off that I had to heal revved my engines back up again, but of course I am still running a few cylinders short of my normal V6. I am pretty sure the extra week off was what made this round 2 of Taxol the easiest...my body was stronger, I was not as "tired" as I had been before, I am able to bounce back a little better. Yesterday was the TA DA day and I woke up feeling good and extremely excited that it came after a week (like it had in the beginning of chemo). The fatigue is still there, but it's nothing compared to what I felt like a few weeks ago. I've spent much less time in bed this round (and much less time on the floor). I did not get the flu-ey aches like last time...no extreme bruising or blood from the nose. Much much much less stress overall on this round.
Oh and did I mention, only TWO MORE TREATMENTS TO GO. It finally feels like I can see the finish line. It finally feels like we are near the end. It finally feels like I can dream about what it will be like to have energy...to sleep without ambien....to have hair?!
Hair hair wonderful hair. I realized from recent communication with out of town friends that I haven't really talked about my hair. You have no idea what the state of my hair is. The last time I talked about it was 2 weeks into chemo when I started to lose it so we buzzed my head. And then I never mentioned it again. So here is the deal with my hair - I didn't lose it all. Which was a total surprise. Not only did I not loose all the hair on my head (so I am pretty stoked that we buzzed all my hair off) but I didn't lose my arm hair, my eyelashes or my eyebrows (very stoked that I didn't lose my eyebrows, not sarcastic on that one). My leg hair is mostly gone (and when I shave it's the equivalent of waxing - gone for weeks). I have light stubble on my head (maybe about 20% of my hair left?) and it's growing...very very slowly (like barely at all, but at least it's growing a little).
I also decided a couple of weeks into having a buzzed head that wearing a scarf was a hassle. When I thought about it, the only people that I really cared what I looked like was my family and they saw me every day all day bald (I never bothered wearing a scarf around the house once I realized it didn't bother Thomas at all). So after my third infusion, when I had to go out the next day to get my immune booster shot, I was feeling tired (plus the appt was early, so running out the door to get there by 9am) and I just didn't grab a scarf to put on my head. I figured if you can't go the hospital bald, where can you go bald. Then I had to go to my acupuncture afterwards....and figured, well they don't care. Then I grabbed lunch after the acupuncture appointment and realized no one really cares that I am cruising around bald...and more importantly it didn't bother me at all. So from then on, I just went bald everywhere. And let me tell you, while 90% of the people don't notice or don't comment, I do get some interesting comments. Here are some of my favorites:
- "what's up with your hair?" yes, this was actually said to me. I was paying the attendant at a parking garage and she looked up and actually said that. I was kinda shocked, and said "chemo" and she looked HORRIFIED and so apologetic. It had never occured to her.
- "did you shave your head by choice?" this was said pretty early on in my going out bald experience. It was very innocent. We were in Cannon Beach (population 1,200) and the person working at the small grocery store was fascinated that I had a shaved head. When I responded (gently) that it wasn't by choice, she said "oh...cause sometimes I just want to (making motions pulling out her hair) yank it all off!" I laughed and said it's very carefree if you decide to it. And she said "someday..."
- "I really like your haircut" said quietly by a young edgy guy in his 20s when I was out getting lunch one day. I wasn't sure if he said it b/c he knew I was going through chemo, or if he really just indeed dug my edgy haircut. Either way, score.
- 2 ladies at my doctor's office commented that I had a perfect head. One was the front office lady, another a medical assistant. This was very early on. I said that my mom told me that, but I wasn't quite sure if she was just saying that (she is a little biased). The front office lady said "no, I see lots of heads....you have a perfect one". That perked me up.
- "Fashion statement or chemo?" this was said by a bald middle aged guy at Costco. At first I thought "oh maybe he is getting chemo too!" but when I responded "chemo" he looked extremely sad and apologized.
and my all time favorite experience......
- Bob, Thomas and I were out to lunch at the beach. We were sitting outside at a small restaurant on a quiet corner. When we walked up one other couple was there. They were older (young grandparent age). They asked if we would take their picture. I took their camera, snapped a couple shots for them, and we started chatting. They were so sweet. He had just ridden (his hog, not a bicycle) all the way from Tahoe (in the rain!) and she had flown in to Portland that morning where he had picked her up. They were going to spend the long weekend leisurely riding back down 101 until they got home again. They were both oohing and ahhing over Thomas and reminiscing about when their grandkids were that young. Oh, and did I mention that they looked like they rode Harleys so it was totally cute to see them get all gushy about Thomas. We chatted for a bit, went back to our own lunches, and they eventually got up to start their trek. She came over before they left and said "I just wanted to say that I don't know what is going on (she motions to my head) but you are such a beautiful family and bless you and I just hope that everything turns out ok" and it was so heartfelt and lovely...it felt like a big hug.
Most of the time the acknowledgment is silent. On the morning 4th of July, we were at Cannon Beach lined up on the little main street watching the adorable local Cannon Beach parade. It's mostly locals in cars, kids on bicycles...very cute. Halfway through, 2 ladies marched by carrying a Susan G Komen banner, decked out in pink (and red, white and blue of course) for the Walk For the Cure. One of the ladies noticed me, gave me a big grin and a wave. It actually made me teary...in a good way. And proud.
I did try wearing my wig....once. We went out for a date night with Chris and Heather. It was chemo eve before my last A&C treatment. I popped the wig on and oh boy it felt weird. My mom and Bob were both completely taken aback when I came out with the wig on. It is identical to my hair ...you know, before I lost it. It was a weird moment. They were both very used to seeing me without hair. I felt weird but figured maybe it will get easier? We got to the restaurant and I regretted wearing it. I felt so self conscience....way more than being bald. I felt like I was wearing a unicorn on my forehead. I kept adjusting it...it just didn't feel right. I felt like people were staring (they weren't). I could not get comfortable. And that is the last time I wore it.
I know why most women don't want to go around bald while on chemo. It puts you completely on display (or at least it feels like that) and I'm sure they think it's like ringing a bell and wearing a sandwich board that says "I have cancer" to everyone around you. But here's the thing....you know what it really says to everyone around you? It says "handle carefully"..."fragile"..."please be gentle with me". And you know what? I don't mind that. I don't mind that random people are going to be a little bit more gentle, a little bit nicer to me. I'll probably miss it when my hair grows back!
So, for now, that is life - a little gentler out in the wild with the occasional amusing (and innocent) statement made about my lack of hair. And as "carefree" as my upkeep is without hair....I still want it back.
Oh, did I mention....only TWO MORE TREATMENTS TO GO!!!!!!!!!!!!!!!!!!!!!!!!!!
Good thing I was feeling so strong that week...because my normally easy breezy Thomas decided to be in a funk. Bob was traveling (his missed his Daddy), new teeth were coming in (ouch), and he is growing like a weed so I am sure his bones hurt (I feel you there kiddo). Every night he cried and cried and cried when I put him to sleep. This is not the norm. And while I am constantly thanking the decision to have moved in with my parents for help, that week made it ever more apparent that it was a necessity. On night 2 of crying, rocking, crying, rocking, crying, he finally fell asleep....only to wake up again a half hour later howling. This was a first. I came into his room and he had thrown up in his sleep. He was hysterical. I swooped him up and yelled for my Mom for help since Bob was gone. How do you comfort a hysterical baby and clean up vomit at the same time? Gigi (aka Grandma, my Mom) and I took turns holding and soothing while the other person cleaned up the mess. 20 minutes and one set of pajamas and changed bedsheet later, I was rocking him back to sleep. But even though he was soothed, he just couldn't get comfortable...constantly shifting and squirming in my arms. 45 minutes later....vomit #2, this time all over me. Yelled again for Gigi, round 2 of soothing hysterical (and now exhausted) baby while the other person cleaned up the mess. Another set of clean PJs (and me now in a bathrobe), back to rocking him to sleep. This time he fell asleep (more like passed out), but I rocked him and soothed him 20 minutes past him falling asleep to make sure there wasn't another incident. It was now 10pm, I was exhausted...and thanking god that we lived with my parents because I don't know how I could have done that alone while going through chemo.
I will say though that the one good thing about rocking a 25lb squirming crocodile to sleep every night is that you get ROCKED arms. Baby boot camp was good for my upper body. Too bad it didn't work my abs out too.
Of course the lovely extra week went by in a FLASH and it was chemo day before I knew it. I didn't have my usual ohmygodIamgoingtovomit feeling when I woke up so I skipped the ativan. But once we got 2 blocks from the hospital that morning the panic hit me hard and I had to fight the urge to jump out at the stoplight. This is a first for me...I can usually "talk" myself out of panic situations...reason with myself. These rushes of panic before chemo cannot be tampered by any of amount of reassuring. It feels like a panic attack and my eyes dart around looking for an escape.
Everything went as usual....check in, weigh in, wait for chemo nurse. But this time when I looked down at my wristband to look for "Karen" written in, it said "Liz". Wait a minute. No Karen? I will be completely honest...I was heartbroken and took it personally. You see, here is the deal with the nurses - they actually request which patients they get. The day before they look at the appointment book together and it's like draft day, they choose the patients they want to work with. It was no coincidence that I had Karen time and time again...she was choosing me. And now it felt like rejection - why didn't Karen choose me this time? I tried to shake it off (it felt so silly being upset that "my" chemo nurse didn't choose me) and made excuses (maybe she wanted me to have someone else...get variety...it's not me it's you....) but it was just a farce. I wanted Karen.
Liz showed up and she looked all of 22 (she just looked really young...I found out later she is my age and has been working with these doctors for the last 8 years). And even though she had the deck stacked against her because all I wanted was the comfort of a nurse I knew, Liz was wonderful. It's no surprise....all of the nurses there are wonderful. They all love working with each, love the doctors, the doctors love them...and it shows. They all used to work together at another clinic and then when Providence opened this clinic in St Vincent's hospital 3 years ago, the entire staff moved over. In the 8 years that they have all worked together (at the last clinic and now this one) there has only been one person to turn over for the ENTIRE OFFICE (this includes front desk, medical assistants, doctors, etc). It's a big office and they are proud of the fact that they are a tight family. And having come from a tight work family myself, I snuggled right in to this new environment.
We did the usual with Liz (new symptoms, how did the last round go, blah blah blah). Then search for a good vein time (she was really good *and gentle* and found one easily). Then send the blood off to run the numbers and wait for Dr Kurup.
The numbers came back (199 platelet count - up from 72 last time....really good!) and I was cleared for chemo this round. But before we went back to the infusion room we talked about my last round and how brutal is was on me. Dr Kurup said that I had an "extreme" reaction to Taxol - both in administering it (allergic reaction) and the side effects (felt like I was in a car wreck). We bargained back and forth about how much drugs I should take and when (I am always for less, she is always for more since she wants me comfortable) and ended up on a compromise where instead of taking the prescribed steroids twice a day, I could start out by just taking it once a day in the morning and see if that works. The reason I hate taking steroids is that I can't sleep at night. And so with this compromise we were thinking that maybe if I just took one in the morning, I could make it to bed time pain free and then be able to just take vicodin for the pain which could also double as a sleep aid. But Dr Kurup made it very clear that if needed to, I could take all 3 prescriptions at night at the same time - the steroid, vicodin for pain relief AND an ambien to fall asleep. Sounds like a pretty jacked up cocktail right? I hoped I didn't have to resort to this.
We went back to the infusion room, got all set up in our chairs (turned them around to face the windows) and settled in like we were getting pedicures. Because of the allergic reaction last time, they set me up with 50mg of Benadryl (last time it was 25mg in the beginning) and zzzzzzzzzzzzzzzzzzzzzzzzz I slipped away. You know when you are on an early morning flight and you close your eyes and you are convinced you didn't fall asleep because you can hear snippets of conversation around you, and the bar cart going by, and the stewardesses talking to the row in front of you.....and then what feels like 5 minutes later the captain comes on and says to prepare for landing and you are like whoa what just happened to the last 45 minutes? That is how sleeping in chemo feels like. I was convinced I didn't fall asleep...just resting my eyes....then I would open them again and my mouth would be hanging wide open, my phone had 3 missed calls and a text message and the clock had somehow moved forward a full hour. Huh? So it went like that for the rest of chemo. My Mom had to leave towards the end for an appointment, so Heather swooped in with lunch, we chatted and ate our burritos and then next thing you know it was all over. My Dad picked me up, took me to my acupuncture appointment with Ella, then back home in time for dinner with Thomas.
**side note - when we went to the infusion room, I saw Karen. I tried to play it cool, but ended up waving like a 3rd grader and mouthing hello enthusiastically. She was not in the normal nurse uniform (white coat) and was just in street clothes. She came over, held my arm and apologized because she was on phone duty today (one nurse gets assigned to handle the medical calls that come in during the day). Phew...she didn't reject me...she was just on phone duty. **
The next few days were much much much better than last time. I took my steroid pill in the morning, the pain was only lingering and minimal. On Saturday I did end up taking 2 pills, one in the morning and one in the afternoon...the pain had started to creep up. Of course sleep was completely elusive the first 4 or 5 nights...even with vicodin AND ambien I would just lie there, toss and turn all night...completely awake by 3am. It gets better every night (restless sleep till 4am, then the next night till 5am, then the next night till 6am.....). And for this round that was probably the worst of the symptoms - no sleep. The pain was manageable. It's a very unique pain, I imagine it kinda feels like extreme arthritis? It's a throbbing swelling sensation in your joints. The result is that you feel extremely fragile. I walk around like an 85 year old the first few days. I feel like my glass knees may break off like the bad guy in the Terminator movie when he gets exposed to liquid nitrogen.
So overall, Taxol round 2 has been the easiest so far. Of course, what they did warn was by this time the "cumulative fatigue" has built up. Before I had started chemo the doctors threw this phrase around a lot...cumulative fatigue. At the time, all I thought it meant was "really tired" and I thought, well tired I can do...I know tired. I've been tired for 2 years - first pregnant tired, then newborn breastfeeding mother tired, then working breastfeeding mother of a baby that doesn't sleep through the night tired....please, how much more tired can chemo make you? I was pretty sure no one could be more tired than a working breastfeeding non-sleeping mother.
Ok, since I have now experienced both I can tell you that they are like comparing apples and oranges. It's a totally different feeling. This must be why they don't call it "cumulative tired"....because fatigue does not feel like tired. When you are tired (even breastfeeding working not sleeping tired) you can still function, albeit retardely...but you can still drive your car, carry a (retarded) conversation, work, feed yourself, etc. When you are "tired" you can rest and feel better. Fatigue....not so much. Fatigue is like being completely out of gas. Nothing in the tank. Can't move. Don't want to. Too tired to walk over to the couch, might as well just lie down right here on the floor. And lay there for a while. This is not an exaggeration, you can find me on the floor often. Good thing my parents have carpet. Of course these are the days when I actually get out of bed. I spend a lot of time in bed.
The extra week off that I had to heal revved my engines back up again, but of course I am still running a few cylinders short of my normal V6. I am pretty sure the extra week off was what made this round 2 of Taxol the easiest...my body was stronger, I was not as "tired" as I had been before, I am able to bounce back a little better. Yesterday was the TA DA day and I woke up feeling good and extremely excited that it came after a week (like it had in the beginning of chemo). The fatigue is still there, but it's nothing compared to what I felt like a few weeks ago. I've spent much less time in bed this round (and much less time on the floor). I did not get the flu-ey aches like last time...no extreme bruising or blood from the nose. Much much much less stress overall on this round.
Oh and did I mention, only TWO MORE TREATMENTS TO GO. It finally feels like I can see the finish line. It finally feels like we are near the end. It finally feels like I can dream about what it will be like to have energy...to sleep without ambien....to have hair?!
Hair hair wonderful hair. I realized from recent communication with out of town friends that I haven't really talked about my hair. You have no idea what the state of my hair is. The last time I talked about it was 2 weeks into chemo when I started to lose it so we buzzed my head. And then I never mentioned it again. So here is the deal with my hair - I didn't lose it all. Which was a total surprise. Not only did I not loose all the hair on my head (so I am pretty stoked that we buzzed all my hair off) but I didn't lose my arm hair, my eyelashes or my eyebrows (very stoked that I didn't lose my eyebrows, not sarcastic on that one). My leg hair is mostly gone (and when I shave it's the equivalent of waxing - gone for weeks). I have light stubble on my head (maybe about 20% of my hair left?) and it's growing...very very slowly (like barely at all, but at least it's growing a little).
I also decided a couple of weeks into having a buzzed head that wearing a scarf was a hassle. When I thought about it, the only people that I really cared what I looked like was my family and they saw me every day all day bald (I never bothered wearing a scarf around the house once I realized it didn't bother Thomas at all). So after my third infusion, when I had to go out the next day to get my immune booster shot, I was feeling tired (plus the appt was early, so running out the door to get there by 9am) and I just didn't grab a scarf to put on my head. I figured if you can't go the hospital bald, where can you go bald. Then I had to go to my acupuncture afterwards....and figured, well they don't care. Then I grabbed lunch after the acupuncture appointment and realized no one really cares that I am cruising around bald...and more importantly it didn't bother me at all. So from then on, I just went bald everywhere. And let me tell you, while 90% of the people don't notice or don't comment, I do get some interesting comments. Here are some of my favorites:
- "what's up with your hair?" yes, this was actually said to me. I was paying the attendant at a parking garage and she looked up and actually said that. I was kinda shocked, and said "chemo" and she looked HORRIFIED and so apologetic. It had never occured to her.
- "did you shave your head by choice?" this was said pretty early on in my going out bald experience. It was very innocent. We were in Cannon Beach (population 1,200) and the person working at the small grocery store was fascinated that I had a shaved head. When I responded (gently) that it wasn't by choice, she said "oh...cause sometimes I just want to (making motions pulling out her hair) yank it all off!" I laughed and said it's very carefree if you decide to it. And she said "someday..."
- "I really like your haircut" said quietly by a young edgy guy in his 20s when I was out getting lunch one day. I wasn't sure if he said it b/c he knew I was going through chemo, or if he really just indeed dug my edgy haircut. Either way, score.
- 2 ladies at my doctor's office commented that I had a perfect head. One was the front office lady, another a medical assistant. This was very early on. I said that my mom told me that, but I wasn't quite sure if she was just saying that (she is a little biased). The front office lady said "no, I see lots of heads....you have a perfect one". That perked me up.
- "Fashion statement or chemo?" this was said by a bald middle aged guy at Costco. At first I thought "oh maybe he is getting chemo too!" but when I responded "chemo" he looked extremely sad and apologized.
and my all time favorite experience......
- Bob, Thomas and I were out to lunch at the beach. We were sitting outside at a small restaurant on a quiet corner. When we walked up one other couple was there. They were older (young grandparent age). They asked if we would take their picture. I took their camera, snapped a couple shots for them, and we started chatting. They were so sweet. He had just ridden (his hog, not a bicycle) all the way from Tahoe (in the rain!) and she had flown in to Portland that morning where he had picked her up. They were going to spend the long weekend leisurely riding back down 101 until they got home again. They were both oohing and ahhing over Thomas and reminiscing about when their grandkids were that young. Oh, and did I mention that they looked like they rode Harleys so it was totally cute to see them get all gushy about Thomas. We chatted for a bit, went back to our own lunches, and they eventually got up to start their trek. She came over before they left and said "I just wanted to say that I don't know what is going on (she motions to my head) but you are such a beautiful family and bless you and I just hope that everything turns out ok" and it was so heartfelt and lovely...it felt like a big hug.
Most of the time the acknowledgment is silent. On the morning 4th of July, we were at Cannon Beach lined up on the little main street watching the adorable local Cannon Beach parade. It's mostly locals in cars, kids on bicycles...very cute. Halfway through, 2 ladies marched by carrying a Susan G Komen banner, decked out in pink (and red, white and blue of course) for the Walk For the Cure. One of the ladies noticed me, gave me a big grin and a wave. It actually made me teary...in a good way. And proud.
I did try wearing my wig....once. We went out for a date night with Chris and Heather. It was chemo eve before my last A&C treatment. I popped the wig on and oh boy it felt weird. My mom and Bob were both completely taken aback when I came out with the wig on. It is identical to my hair ...you know, before I lost it. It was a weird moment. They were both very used to seeing me without hair. I felt weird but figured maybe it will get easier? We got to the restaurant and I regretted wearing it. I felt so self conscience....way more than being bald. I felt like I was wearing a unicorn on my forehead. I kept adjusting it...it just didn't feel right. I felt like people were staring (they weren't). I could not get comfortable. And that is the last time I wore it.
I know why most women don't want to go around bald while on chemo. It puts you completely on display (or at least it feels like that) and I'm sure they think it's like ringing a bell and wearing a sandwich board that says "I have cancer" to everyone around you. But here's the thing....you know what it really says to everyone around you? It says "handle carefully"..."fragile"..."please be gentle with me". And you know what? I don't mind that. I don't mind that random people are going to be a little bit more gentle, a little bit nicer to me. I'll probably miss it when my hair grows back!
So, for now, that is life - a little gentler out in the wild with the occasional amusing (and innocent) statement made about my lack of hair. And as "carefree" as my upkeep is without hair....I still want it back.
Oh, did I mention....only TWO MORE TREATMENTS TO GO!!!!!!!!!!!!!!!!!!!!!!!!!!
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