It’s finally done. Chemo that is. Last week i had my very last chemo. I am beyond happy to not have to go back and continue getting poison in my veins every 3 weeks. As much fun as it sounds..trust me it’s just not. Then i went for the radiation consult, 5 days after the last Chemo. Not much of a break. They explained…stuff. Because that what most things in my head feel like lately. Lots of stuff floating around while I hoped I grabbed the right information I was looking for at whatever point. Something about a planning appointment when they do the small tattoo so the radiate the correct places on my body. How do they even know where? Or are they just throwing tattoo dots on there haphazardly. I guess I’ll find out next week. Then they talked about side effects. After that talk it is always a wonder anyone goes back. Burnt skin, fatigue, can damage the lung they are working near, and oh right…like every other cancer treatment, it carries a small risk of a whole different type of cancer. I’m sure the side effects will be almost as much fun as the chemo. Double mastectomy, chemo, radiation…what more could a girl ask for? Right. People who understand what’s going on in my head. Who get that yes, chemo is done but as much as that is exciting…it is also really scary. And that cancer treatment doesn’t end with active treatment or when chemo is over. In my head, it seems that the chemo makes it so any new cancer cells are not forming and whatever was left floating around cannot grow. With chemo being over, that won’t be there. The protection of some sort. And if I have never had a body scan, how do they know it didn’t move anywhere before they caught it. Lymph nodes are like a freaking highway around the body. I have a spot on my sternum that has been hurting for a while. How long is a while you ask? Well I wish I remembered. It was either before…or after surgery. I don’t remember. I do know it has been hurting me for a while now. I had been questioning if it was surgical pain and once healed it would be ok or if it was something else. I assumed the whole time it would be checked so I didn’t need to worry. Except no scans, just follow people clinically. What does that mean? I call for a sore back or hip? Or if I bruise more frequently? At this rate I could be calling every 5 minutes. They are gonna need to give me guidelines for what to call about. I can feel myself becoming anxious over it already and I’m not even at that point yet. I still have radiation to deal with. It will start about 4 weeks after my last chemo. It’s 5days a week for 6 weeks. They radiate the lymph nodes in my sternum, near my clavicle, and my right axilla. It sounds like a lot. And for a long time. But I got thru chemo. That was hell and back and I did it. So I can do this. Somehow. My body is getting tired. Emotionally this period of time has had so much going on that somedays I feel like a bystander watching as my life goes by. Other times I can’t seem to shake the fog that surrounds my head most of the time. Or now I do this fun thing where I get myself all in my own head and get anxious and can barely calm myself down. Sitting in tears saying to myself there is nothing you can do why are you crying?? But it doesn’t stop until it’s good and ready. It will get better. I always get thru. I will figure it out and be ok. Because if nothing else I got this. Cancer is not my life, it is simply a passerby through my life.
I had assumed that over time the chemo would wear down on my body. But…each time is so much harder than I could have ever expected. I am recovering from the awful after chemo bone pain as I have each time. But now I have this lasting muscle exhaustion in my legs especially. It feels like I have walked miles when I have gone down a few stairs. In order to concentrate, I need to pay attention to the one thing I need to listen to most. I can’t listen to either person if two people try talking to me. I am dizzy almost all of the time. It’s crazy. I want to get in my car and drive to give my brain a few minutes to do nothing but drive and listen to music. Between being dizzy and often unable to concentrate, I don’t feel safe driving yet. I feel so trapped. I am someone who likes to just go. I enjoy spontaneity. The extent of me being spontaneous these days are whether or not I’ll stay upstairs or go downstairs each day. Will I step outside? Pretty exciting stuff. Because even if I want to go somewhere, I can’t. Unless I have someone to hold my hand and take me there. Don’t get me wrong, I appreciate everything that people have done. But I love that few minutes in the car before going somewhere. Before work, appointments, heading home. Those minutes get me thru. I can turn up the music and just not think. It’s not the same with people in the car. It’s not the same sitting at home with headphones in. I can still find my way into my own head laying here, that doesn’t happen in the car.
All of this has been wearing on me. These past few weeks seems to be have been some of the hardest so far. Pain was the usual awful right after chemo. Nausea was a little but not terrible. And my anxiety is 1000%. Since starting the new chemo medication, anxiety, which is always there but easily managed, has been near impossible for me to calm myself down. I assume it is related to a side effect of the new chemo. And I think having myself be so very sick and tired of cancer and everything that goes with it. I don’t want to be exhausted any longer. I want to go for a walk, do fun things. I want to make the memories I love making. Time is not a given and me laying here exhausted and unable to calm myself is wasting so many precious minutes. Time I’ll never get back. But the silver lining is without a cancer diagnosis and going thru all of this, I never would have stopped to smell the roses and look at life from a different perspective. That some of the things I thought mattered… really don’t. I wouldn’t have wished cancer on myself, but I suppose I can find something a little good out of it.
Going back for another round of chemo when you are finally starting to feel like some version of yourself after months of being inhabited by someone you don’t recognize is one of the scariest and…most unappealing thoughts in the universe. This round I got three weeks between treatments and it was just long enough that for the last day or so, I sort of feel like me. Kind of. I sort of feel like crawling out of my own skin from anxiety these days but not sick per say. This is the third chemo medication. I had two medications for 4 rounds and another one for the next 4 rounds. Last round was #5, making it my first experience with the new medication. It was kind of like…hey open door #2 and see how that one goes. It did not go well. It caused the most unbearable bone pain I have ever felt in my life. I can’t even compare it to anything. Or really describe it. I was exhausted, dizzy, and my bones had continuous sharp pains that went thru my entire skeletal system. It would sort of shift around. Sometimes my arm, then shin, then back, sometimes all of it, and always my ankles…I have no idea why but my ankles hurt for the solid week the bone pain lasted. Everything else did too…but my ankles were the worst. Now the pain has subsided to a dull roar and I am back to my usual sore. Of course it gets worse when I do “too much” which of course I have no idea I’m overdoing it until it’s too late, or when Mercury is in retrograde or I have no clue. But physically, I feel a little more me than I have in awhile. I’m getting my pre-chemo bloodwork in the morning. My fingers are crossed that I’ve had long enough to recover between treatments to have my blood counts increase instead of the steady decrease I have seen since the beginning of treatments. The next day it will be back to chemo and starting over at that horribleness I had been having before. I hate being sick. I am beyond over it. 3 more treatments. I know I can get thru it. It’s the rest of it that makes everything so much harder.
When people think of someone who’s out of work or not somewhere because they have cancer…there are so many aspects that I don’t think cross their minds. It never did for me at least. You see pictures of people getting chemo in an IV, maybe radiation, you hear of some side effects like nausea or vomiting, being tired, hair loss, things like that. I had never considered I would become so dizzy randomly that I couldn’t drive. I haven’t driven in 4 months. My blood pressure runs low regularly, and chemo seems to have made it a little lower making this dizziness worse. That I would be physically tired, my muscles would feel like I had run a million miles but because I had slept, my brain wasn’t at all. So I would lay, trying to find a way to keep busy without doing a whole lot. That staying home for months on end would eventually get to me. I try to get out when I can. There are days I just can’t and days when I want to and I have no ride and no where to go at the time I can. It’s frustrating. I am used to going places, working, being independent. Now I have to depend on people for everything. I can’t go where I want, when I want…ever. If I was having a crappy day, I could go for a ride. Turn up the music and drive to nowhere. Now I have to sit at home and have people in my house constantly talking to me. I have never been so anxious in my life. Nothing is within my control anymore. I have no doubt it will get better. But right now is hard. I have to figure out how to calm myself down, breathe a little more slowly, and attempt to remember that this is not forever. I got this.
I was half way finished chemo. That seemed exciting. Right?!? I mean…half of my treatments were all over. That also meant adriamycin and cytoxan were over and taxol was starting. The devil you know…? The first taxol treatment got delayed because my blood counts were getting lower each treatment and I was wiped out. My oncologist and I decided it was in my best interest to wait a week to give my body the time it needed to recover a little more. We also decided taxol every third week instead of every other might be a better plan for my body. I keep getting weaker every cycle. Barely getting any “good” days between rounds and only a couple “decent” days. It was exhausting. The good part (I think) about every third week is that I probably will not need neulasta after each treatment. My body getting the extra week to recover should give me time to rebuild my white blood cell count. My concern, of course….how low will I end up without the help of the neulasta? Will I end up needing to worry more than I already do about getting sick? This whole cancer crap sucks. All this time cancer has been around and I still have to get poison put in my veins and am worried about becoming neutropenic and increasingly more anemic. It seems the big medical companies should have a better answer by now than nurses wearing what reminds me of a hazmat suit to administer poison into a port in my chest to kill off hopefully all the bad cells…and some good ones while it’s in there. Then they monitor my bloodwork to make sure not too many good cells were killed off this cycle and my body can handle another go around. But I guess this is the system we are still going with. Go figure.
So, I had my first taxol treatment 3 weeks after my last adriamycin/cytoxan one. I asked about the side effects. It effects everyone differently. That’s been the standard answer to every question asked pretty much throughout all of this. Super…so I’ll just wing it? Or maybe a hint? Ok…neuropathy (numbness/tingling in hands or feet, got it. Tired, check. Achy, no problem. Those are the usual big ones besides an allergic reaction which I didn’t have. I can handle that. The last two months have been much worse than that. No problem. Haha. Very funny. Tired..yes, very. But I can manage tired. Achy, is that what we are calling this? I thought when my bones felt like they may implode inside my skin…might be classified as a bit more than “achy”. I clearly missed the chemo terms class or something. You know it hurts when you decide each time how badly you actually have to use the bathroom based on whether or not there is someone around to help you stand and if your legs can possibly withstand the weight of your body without the question of them snapping. This is not achy. Whoever reported a side effect of achy is insane. Achy is when you go to the gym and you do a little too much, your muscles the next day…they are achy. This is….hurty. It’s all I’ve got to describe it. They can placate patients with a nice term, but in reality, it hurts. Bone pain is miserable. I can feel it trying to bring my spirits down. It’s hard staying positive when every single inch of your body is hurting. I also have the fear of the unknown. How long does this side effect last? If I had an end in sight it may be easier. Right now it just hurts, a little less, then worse. Over and over. It can try to break my spirit. It is frustrating sitting here day after day. Unable to go anywhere or do anything without someone to take me. But I will be ok. I have got this. Even on days it seems really hard. It is not forever.
Well, it’s a been a bit since I wrote anything, my little ones were sick and I was busy trying to be a good mama from as far away as possible. I want to be there for them without getting myself sick. My daughter had this never ending virus and my son had a second ear infection in 2 weeks. He stood in my doorway with a temperature of 103.7 crying and begging to go see the doctor the other day. My husband took them both but it pulls at every heart string I have to not be able to be there, not be able to snuggle with them and give them that comfort that only mama can. I am not warm and fuzzy in general, but my babies do it to me. Even tho they drive me insane on the regular. I am happy they are finally feeling better. As they stopped being sick and their fevers subsided, they were so excited to stop giving air hugs and finally come lay with me and give me the biggest hugs possible. I had missed them so much.
I have been so unbelievably tired I cannot explain. I have written about it in the past but it just keeps getting worse. I will stay on the second floor of my house often because going downstairs means at some point I will need to walk back up…and that’s allot depending on how I feel. I tried explaining to my little ones how important it is to clean up after themselves, wash their hands, all the stuff they already know but seem to “forget” lately because I’m not standing there to remind them and my husband has to many things to do trying to be both of us.
I went last Wednesday to have my fifth round of chemo. It would also be my first round of Taxol. My anemia keeps getting worse every treatment and the doctor said it would be safer to wait another week to give my body a little more time to recover. I am also going to be waiting 3 weeks between treatments inside of 2. My body is exhausted. I need the extra recovery time. It will make the whole process last longer which is the last thing in the world I could possibly want but I just can’t do it anymore. I would have one week of being sick, a couple days of on and off feeling ok, and then a couple days of feeling mostly ok before going back. I would spend my few good days dreading going back. It has eased my mind a little knowing I will have an entire extra week before I have to go back again. A week when I should feel mostly decent. I am not sure how Taxol will treat me, which side effects I will feel and which I will be spared from. I will find out in a few days. Regardless, I have an entire week longer to not feel miserable, maybe eat a little more, just feel like me a little bit. I guess I will see. I’ll take those few extra weeks overall if it makes the entire experience less terrible. I’ll let you know next week how Taxol how was! Crossing my fingers the side effects are not so bad.
There is not much more frustrating in the world than having sick kids and being unable to be mama and take care of them as usual. They come to cuddle when they don’t feel well and right now they just can’t. They give me air hugs and throw kisses and go lay in their rooms. It breaks my heart every single time. They text me and call me and send cute Bitmoji’s and emojis and whatever it takes to make us both laugh. My youngest has the hardest time with it all. He’s only 8. He has an ear infection even with tubes right now. When it started, he had a fever and he was crying and I just wanted to hug him. But he gave me the saddest little air hug and left.
I still talk to doctors on the phone and email and school nurses, but it’s not the same. I’m used to going to most all of their appointments. I’m their mama, and I’m a nurse. I am the one that asks the questions. I have taught my oldest to advocate for himself over the years. I know he can handle it. He will not tell me he wants me there because he knows I can’t be and he doesn’t like me to be more stressed out…unless it’s over something silly that he’s caused then it’s ok if mom is sick and we are trying to drive her insane. He is 19 after all. When he was back home from the hospital stay, he drove me to an appointment I had. I was sick and needed fluids. I’m having a very hard time getting enough in. I’m used to my husband or K bringing me to all my appointments, my son was new to this. But he made me proud. He was the me that I always am for him. He was so grown up talking to the dr, making sure the dr understood all of my symptoms and asking how he planned to treat me until he felt we were both satisfied with the answer. He knows me, he knows when I’m happy with a doctors answers and when I’m not. I want to say I’m surprised, but he has been watching me advocate for him for 19 years, I guess he’s been paying more attention than I ever thought.
All day I watched on my daughter’s dexcom app as her blood sugar kept going up and up, then down a little, just to head right back up. I was on the phone with the school nurse and endocrinologist a few times. She is 11. She has a hard time remembering to cover herself with insulin when she eats. When she’s at school in the morning, she can be reminded and often still forgets, not because she is resistive, she honestly forgets the second she blinks. But this went on all day. After school, she had a temperature of 101.5. Super. Now I shouldn’t go close to her. I can’t get sick. It also explains her blood sugar being so high. Then the middle of the night came and she would not go down. So we start trying insulin pump site changes, one didn’t work, change it again, calibration of a dexcom that isn’t supposed to need it, ketone checks…all kinds of fun at 4am. We were all tired. Fingers crossed it works and she comes down into a safe range. Will see, so far she is under 400…that’s good after today. Not good in general but going in the right direction.
Just when I was going back to sleep, my body was like yep no…not now, just when you were having so much fun not sleeping… I think it’s a great time for nausea and a stomachache. Of course it is, so I took my zofran and drank small sips of ginger ale. Eventually I will sleep again. Just not right now. Maybe in a little while. But my girlie should be getting better, my oldest is home from the hospital, and my youngest says his ears are finally feeling better. If I had to make a choice, I’ll sacrifice a night of sleep for them. I’ve done it so many times before. What’s one more night? Cancer will pass. I will beat this. They still need their mother, no matter what diagnosis I have. It’s an incredibly hard balance but I’m trying my best. Some days I feel like I did ok and other days I can’t get up and have to rely on others for help. They say it takes a village…right? Thank goodness my village is supportive because I could not do it without them.
As I go along this crazy journey, I have had way too much time on my hands to sit and think. But some of the thinking is useful. I have realized I live my life doing what I’m supposed to. Anyone who knows me is like uh no you don’t. But in reality I do. Mostly. I usually feel like my life is a series of situations just sort of handed to me that I play a part in that I don’t get much of a say in. I suppose that is life when you have one child that eventually needs a transplant (when he agrees to it again, preferably not during Mom’s chemo this time), another child with ridiculously uncontrolled type 1 diabetes, and another with ear problems, sleep trouble, and the occasional anger outburst like you read about. For right now, there isn’t a whole lot I can physically do about any of them. I can’t do much about work, life, kids, anything. I’ve had to realize if I don’t take care of myself right now…I won’t be here to deal with anything else. I will still be a wonderful mom to my babies, work hard at my job, and do everything that needs to be done in my life. But…I think I will be looking at things differently. Some things are not an emergency, no matter who has declared it one. I do deserve time for me, out of work. Over time, work has become my social time…simply because it’s a hassle to leave my house. I deserve a life. I have friends, I have people who care about me and I should be allowed to see them out of work without feeling like I’m breaking out prison. I now have a much clearer view of who is there for me since my diagnosis. Some I expected, some I did not. But regardless, it is what it is. And I am assuming one will never forget how someone treated you during a time when you needed them the most.
I can’t wait to be me again. Except this me wants to be living her best life. I’ve already started. I’m enjoying little things I never had time to stop and notice. I have allllll the time in the world now. And even when things are busier…I have no intention of not stopping to smell the roses. Things can wait two seconds. Because I deserve my best life.