Good News Everyone!

I know what you’re thinking, “Amelia, isn’t this Thursday another round of chemo for you? Why aren’t you in bed wishing for death and trying not to vomit?” First of all, congrats for following my treatment schedule so closely, not even my brother does that! (Hi Moses, you’re a good brother and I love you even with our family’s charming inability to plan/read/follow schedules.) Secondly, today was supposed to be my final round of A.C. chemo treatments. Yet here I sit, perfectly comfortable with hardly a med in my body. It is a very good thing, so let me explain.

The day before scheduled treatments I always have some blood work done and meet with my oncologist. Since chemo drugs just wreak havoc on the body, my oncologist closely monitors the levels of important things (like white blood cell count) in my body. It’s also a good time to check in with the doctor, see what meds are working, what’s not going well, and hopefully fix any issues I might be having with the whole process. I’ve gone to these meetings with some of my support team, but I’ve also gone by myself as well, so it’s not too big of a deal for me. At this point in the chemo cycle I’m off most, if not all, of my anti nausea drugs so I do have the ability to drive myself (it’s very exciting), so going solo is a perfectly good option.

As I drove myself to the hospital, I just felt differently then I had been before. There was a nagging sense of dread that was just starting to creep over my conscious. True, I never really want to go to these appointments, but just the thought of going through the whole cycle one more time was weighing heavy on me. When I go solo to appointments I have a necklace that Kris gave me I like to wear; it’s my way of having him with me when he can’t be. From the time I parked my car I was fumbling around with it almost non-stop. By the time I had made it into the lab to have my blood draw, my stomach was upset and I was just doing my best to hold back tears. I feel like I have made it so far in this process being strong and being okay with whatever was going to happen to me, but something was just finally starting to crack.

I went back with the nurse to have my blood drawn from my port, something that has been a little bit of an ordeal the last few times its been attempted. Apparently my body is very good at recognizing foreign objects and wanting nothing to do with them. The line in the port that connects with my blood stream has been blocked the last two times the nurses have tried to access it. This results in attempting to clear the line with saline multiple times before using something that breaks down proteins and can open up the line again. One of my favorite nurses referred to it as “Drain-o, but for your veins.” (side note, it should totally be called vein-o). Everything is administered into the port by syringe, and every time the saline is put in I get a very sickly metallic taste in my mouth and nose. This whole process goes on for upwards of 30 to 45 minutes. It’s not what I would call a pleasant experience, but it’s not the worst either. The nurse and I were all geared up to deal with another blockage in the blood line, and the blood flowed perfectly on the first try. It was a very good sign that things were looking up for me. It also further proves my theory that the more prepared you are, the less likely you’ll need to use your back up materials. Anyway…

From the lab I travel down the hallway to Dr. T’s office. I was feeling better thanks to the quick blood draw but my stomach was still upset and I was just down. Every minute I spent sitting alone waiting for the doctor felt worse and worse. You know when you’re just having a horrible day, and it won’t stop, and you just feel on the verge of tears from everything? It was just that feeling creeping over me alone in reception. It was not good. I finally got called back, got my weight and blood pressure checked, and was once again alone in a room waiting. Dr. T finally arrived and asked me how things were going and it was all I could do to keep from sobbing my answer at her. Instead of my usual conversation on how meds are doing I cracked and just said, “This last round of chemo was so terrible, I don’t know if I can handle going through all of this again.” I just opened up about the overwhelming nausea and pain my body was in and how I didn’t even feel human while I was going through it. Dr. T listening sympathetically and after expressing her condolence, stopped to think for a moment. “Well, from here there are a few courses of action we can take.” Just hearing her say that sparked a small flame of hope deep inside of me. I figured there was nothing that could be done; I would just have to suck up the hellacious treatment one more time. But now, there was a chance, however small it may be, that this time could be different.

Dr. T spent the next few minutes going over my lab results from my most recent blood test, (it is amazing how fast they can get results, I can’t even get a pizza that quickly.) the write up that was done post surgery on the tumor that was removed in surgery, and her note from past appointments on how I had been doing with treatment. From all of this we got into a discussion of the path of cancer treatment. One of the nice things about breast cancer is the fact that since it is so common, there is a pretty clear pathway you are set on once diagnosed. The chemo pathway was 4 treatments of A.C. and 4 treatments of Taxol. However this is just the overall guidelines of what people normally do. Dr. T. informed me that because of all my test results and how god awful the side effects of the A.C. treatments were on me, that I wouldn’t need the 4^th A.C. treatment. As soon as those words were spoken I felt like the world’s largest weight had been lifted off my chest and I started to cry out of joy. No words can possibly explain how awful going through those treatments are and to be told I didn’t have to do the last one was the best news I had gotten since I started this whole mess.

Dr. T told me there are a lot of factors that went into her decision to forgo the last round of treatment. If my tumor had been 8 inches, or the lymph nodes were positive then I would have just had to suck it up and deal with the last treatment. Also my age was a factor in all of this as well. Apparently the younger the patient the worse the side effects of chemo are. I guess 55 year old women going through the same treatment can get by with one small anti nausea med and be just fine. Her theory is that younger women haven’t had to process as many drugs through their bodies before and are just hit harder by the chemo meds. I also learned that alcoholics have the easiest time with nausea while going through chemo, which to me is just fascinating. So my young healthy body is to blame for taking the meds so harshly, but I am assured it’s a good thing in the long run as my body is healing itself much more efficiently than my older counterparts.  Anyway, the point is my quality of life was in the toilet, literally, while on that treatment. Dr. T said what it really boils down to for me is that if my cancer is going to return, it will return whether I have 3 treatments or 4, so there is no need to keep putting my body through hell. It’s a bit of a downer to think of it in those terms, and it doesn’t mean she thinks I will get cancer again. Remember all of these treatments are just a numbers game, and my numbers won’t change by forcing myself through another horrendous A.C. chemo treatment.

Now this doesn’t mean that I’m completely out of the woods as far as chemo goes. I’ve still got the 4 taxol treatment to live through. It should be the same schedule of one treatment every two weeks, blood draw appointment the day before, and booster shot the day after. However, the taxol treatments are supposed to be much much much easier going on my body than the previous treatments. Where the A.C. treatments are one of the harshest on the GI track causing a lot of nausea, mouth sores, and intestinal distress, the taxol treatments are on the low end with most people experiencing no nausea at all! (If that statement doesn’t excite you, allow me to be overly excited for you!) Now I was told it’s still a possibility, so don’t go throwing all the anti nausea meds in the trash just yet, but my chances are very very good that it won’t be an issue any longer.  The taxol’s main side effects are fatigue and a general achy soreness in the bones. There is also an increased chance of hair loss, so all the lovely fuzz that’s still on my head might be out of here, as well as my eyebrows. Between nausea that is so bad you can’t get out of bed and losing the remainder of my hair, I will gladly take the hair loss.

The original plan was to have me start the taxol treatments today in place of the final A.C. treatment. However, since it’s a new chemo treatment I need to get pre-approval for it with my insurance so I don’t have to pay the exorbitant costs out of pocket. Since it takes a few days for approval to go through, my first treatment is scheduled for next Thursday (the 27^th). I basically get a week off between chemo treatments that I just get to feel healthy and alive! It also happens to coincide with Kris’s spring break from school. I cannot properly express how excited I am to have time off from chemo with Kris where we both have absolutely nothing to do. Instead of sad and nervous I just feel happy and hopeful. I know the next round of treatments aren’t going to be a walk in the park, but according to my doctors, other patients I’ve talked to, and the oh so reliable internets, these treatments are much easier to deal with. I will still have 4 of the taxol treatments, but I’m starting them a week earlier then I originally had scheduled. To me, this is yet more good news because that bumps up my final chemo treatment by a week as well! So instead of being done on May 15^th, I’ll be done with all of this crap on the 8^th! That then give me 3 weeks to fully recover for my birthday! It sounds silly but I’m so happy that I’ll be completely done with chemo by my birthday. I feel better knowing that cancer will only be present during one year of my life. 28 will be the year I found and beat cancer, 29 I will be a survivor.

So to recap, I’m not having the 4^th A.C. chemo treatment. I have a fantastic week off with Kris where all I have to do is feel good. I start my taxol treatments on the 27^th, and I am completely done with chemo on the 8^th of May!

Everything  is going very well and things are looking up. Hooray!

Chemotherapy: A pain in my ass

It just occurred to me yesterday that it has been an obscene amount of time since I’ve updated my blog. I think I’ve had a pretty valid excuse, but I’ve been told I can’t use “I’ve got cancer” in every award situation; for the record, I still think it’s funny, but my sense of humor has always been a little different. This all came about from talking to Daniel, Kris’s younger brother. I decided I wanted a change of venue so I spent the day on another couch at the family farm in Sheridan. Dan happened to have the day off of work so we ended up talking. He was having me describe the chemo process I was undergoing and stopped me to ask if I’d written any of this in the blog. He made the valid point that aside from letting people know what I’m really going through its good for my own personal records. That Dan is one smart, salty-mouthed man. You can thank him for my glorious return to the world of online journaling.

As I write this, it has been about a month since I have started chemotherapy. During this therapy I will have 8 different chemo treatments, each one two weeks apart. If you’re feeling fancy, there are three different drugs being used in treatments: Adriamycin (A-dree-o-my-sin), Cytoxan (si-tox-in), and Taxol (tax-all). Its referred to as A.C.T. treatment, which quite frankly is just so much easier than trying to figure out the correct pronunciations of those drugs (I did my best based on what I can remember). The first four treatments are the A and the C parts, the final four treatments will be the T. Sounds easy enough right?

Now some might be asking, “But Amelia, if you had surgery successfully removing all of the cancer from your body, why would you need chemotherapy?” That is a fine quandary, and one that I asked my oncologist as well. The easiest way to explain it, according to my very trusted Dr. T., is that it’s simply a numbers game at this point…side-note: no I cannot remember exact figures so please do not quote me with any sort of authority. There are a lot of people who have absolutely everything removed from the body during surgery. You hope and pray that you fall into this category but unfortunately not everyone does. As far as our technology has come, there is still no way to be 100% sure that every little speck of cancer has been removed from my body. As time passes and I get older, the risk for reoccurrence gets higher and higher. Reoccurrence means any kind of cancer coming back, not just the specific one that I was diagnosed with. With the A.C.T. treatment, my risk of any occurrence goes down by 50% or more.  So the choice (yes it is a choice, I could have said, “screw it” and called it a day with surgery) to undergo chemotherapy came down to if I was willing to suffer now for 4 months to statistically increase the likelihood of a better life for the rest of my years.  Since I’m planning to live a whole lot longer than just 5 months, it seemed like a no brainer. Besides, do you remember that little micro-metastasis that was found in my lymph node? Well I sure do and on the small chance that the little tumor had already taken a trip to somewhere else in the body, I want it squashed and dead.

Before I stated this whole ordeal, my knowledge of chemotherapy was limited to the image of a bald person vomiting while their veins are being pumped with god knows what. Well, some of that is accurate, but it’s a very incomplete view. That “stuff” being pumped into my veins would be the aforementioned A.C.T. treatment. The chemo drugs work by targeting cells that are rapidly multiplying. Cancer can be defined as cells multiplying out of control, so the drugs would target them. Unfortunately, there are a lot of cells in the body that multiply very quickly. Side note, your body is amazing; if you’ve never taken the time to contemplate it before, just think about the millions of things that are happening inside you right now. It is insane and very cool.  Some of the cells that turn over the most in your body are your entire gastrointestinal tract (G.I. tract= the mouth, stomach, bowels etc.), your reproductive system, and your hair. That is why people get nauseous and lose their hair during treatment. Someday I hope that technology will bring us to a place that can track, target, and destroy cancer cells without affecting the rest of the body, but until that utopia arises it seems like a small price to pay.

Aside from all the side effects of chemo, treatment itself is actually not too terrible. It all really starts the day before I get the chemo drugs. I go to the hospital and have my blood drawn to check my various vitals, and then I have a nice chat with Dr. T about how the previous round of meds went. During this time I can get different prescriptions (more on the insane amount of those later), address any concerns I have, and just try to prepare the best I can for the hellish onslaught that will start in 24 hours. I’m sent on my way and really I just try to enjoy feeling normal for a while.

On the day of treatment, it’s right back to the hospital and my friends at oncology. The room that the chemo meds are administered in is surprisingly comfortable. It’s a large, open room littered with big comfy armchairs. There’s a big window that looks out over downtown Salem, and I’ve never seen more than 10 other people getting treatment at the same time I’m there. After I’m seated and comfortable (I usually take a blanket since I’m cold 90% of the time), my very nice oncology nurse hooks up my port to some really good anti-nausea medication. The two medications I’m given are supposed to last for 72 hours, and are so hardcore that apparently insurance companies won’t approve of them for anything but chemo. Everything, including the chemo drugs, is put into my body through my portacath, or port.  My port is that weird little quarter sized device that’s just under the skin by my right collarbone.  It is single handedly the best thing I did for myself before starting chemo. I can use the port for blood draws and to administer anything intravenously. My arms are never touched and I don’t end up with bruises or track marks on my forearms. Even better, I have a topical cream that numbs the skin so I don’t even feel the initial needle go in! I would highly recommend it to anyone faced with chemo or something similar, it is so good.

After the anti-nausea meds are in my system I’m ready for my Adriamycin. The nurse brings in what I can only describe as a giant syringe full of almost neon red liquid. Seriously this thing is about as big as three Costco dogs tied together. I’m also given a cup of ice chips to chew while the Adriamycin is being administered. I believe the ice chips are to help lower the temperature of my mouth and reduce the risk of having mouth sores as a result of this treatment. The nurse has to hand-administer the Adriamycin, so for the next half an hour they sit by my arm chair and slowly pump this shockingly bright liquid into my body. One of the cool things (cool to me) about this drug is that the color doesn’t metabolize while it goes through the body. That means the next few times I pee, it’s a beautiful sunset orange red color. I’ve been told that some people can cry red tears from this treatment too, but alas I haven’t had that night stigmata experience. I guess some people have a very adverse reaction to Adriamycin, which is why the nurse has to hand deliver it versus putting it on drip. I have been very lucky to not fall into that category. Aside from the person sitting next to me and watching them administer the drug, I couldn’t really tell when it’s being put into my body.

Once all the red Adriamycin is in, the nurse gets the Cytoxan. This one is pretty uneventful, I don’t even get more ice chips for it. The Cytoxan gets hooked up to a drip and then just takes 45 minutes to an hour to enter my bloodstream. During this time I’ve been so pumped full of liquids I’m usually in need of a restroom. Since I’ve got the Cytoxan on drip I get to shuffle to the restroom with one of those big IV stands. During this time, I get to see whoever else is getting treatment at the same time I am. Needless to say I have thrown the age curve every time I’ve been there. Some people are knitting, some are reading, quite a few just sleep through their treatment. Everyone has a fragile air about them, and I always wonder if I look the same way and just don’t recognize it. I like to think I’m strong, but that only takes you so far when you’re being injected with something that’s a derivative of mustard gas (for real, Cytoxan, look it up).

The Cytoxan is the last thing I get and, after the drip is done, I am free to go on my merry way. Well, the nurse takes the needle out of my port, THEN I’m on my way. After treatment I have an hour to two before I’m ready to drop from exhaustion. I usually try to eat something during that time, kind of like a last meal before the nausea and fatigue sets in. After delicious glorious food, I climb into bed and sleep for a while. When I wake up it is to a world of discomfort. The nausea is by far the worst part of this whole experience. On top of the two IV meds I’m given at the hospital, I have 5 anti nausea meds that I take during the first part of recovery. Even with all of that help, I am still uncomfortable and ailing for at least 5 days following treatment. It’s hard since I know eating and drinking fluids helps me feel better, but it’s the last thing I want to do. The other side effect that’s not joking around is the fatigue. I really cannot tell you too much about my first few days after treatment since I’m completely wiped out and spend the majority of the time either asleep or on my way to being asleep. If I’m treated on Thursday, it isn’t until Monday that I start to regain some form of cognizance. On top of all of this, my mouth becomes really sensitive. I don’t know if you’ve ever woken up while having a bad flu and you feel like your mouth is just coated with while yucky film, but that is essentially what happens about 4 times a day. I brush my teeth a lot and use a specialized mouthwash but it only keeps the yuck at bay for so long. All of this compounded with bone and joint pain and that’s a pretty good idea as to what I’m going through.

I almost forgot about the day after treatment. 24 hours from the end of treatment, I have to drag my poor sick butt back to the hospital and get a shot. I cannot remember what the name of this shot is but I know two things. One, it promotes bone marrow production which is important to keep my vitals at normal levels. Two, it is obscenely expensive (thank god for insurance). I get this shot in my right arm from a very small needle, but it takes about 2 minutes to slowly inject the whole thing. That might not seem like that much time but think about a needle going into your body for two whole minutes and you can see how time can stretch. Some of the main producers of bone marrow in the body are the sternum (chest), the lower vertebra (lower back), and the femur (in the thigh). The shot kicks production into high gear to make up for the losses it suffers due to the chemo drugs. Those three spots become very painful and achy for a week after the shot. As if I needed another problem to deal with during this time…

Aside from the aches and pains, nausea and fatigue, the hardest thing I have had to deal with is the isolation chemo inflicts. Due to the nature of treatment, my immune system is pretty much nonexistent.  Any small cold of flu germ will, at best, land me in the hospital for days. Because of this, there are millions of restrictions placed on those in chemo. It have turned me into a Howard Hughes level hypochondriac. One becomes incredibly aware of how many people in the general public are coughing, sneezing, or wiping a runny nose on their sleeve (it happens, a lot!). To avoid crowds as much as possible I have had to take an extended leave of absence from work (for some reason, Dr. T. didn’t think kindergarteners were very clean), and I am pretty much relegated to the house. Even the simplest task, like going to the grocery store, becomes a stressful endeavor that has to be planned around peak hours and accompanied by copious amounts of hand sanitizer. Not to mention the fact I can only really drive for about 3 days out of each chemo cycle because of the drugs I’m on. I have to be incredibly careful with the food I’m eating as well (which is ironic since eating is such a challenge anyway). I can’t eat from potlucks or buffets, it’s been recommended I only use paper plates and disposable cutlery to reduce germs, and worst of all, I CAN’T HAVE SELF SERVE FROZEN YOGURT!!!!!!!! It is the most extreme injustice I have experienced so far. It has to do with the fact that the frozen yogurt machines are accessible to the general public, and the general public are dirty animals. I think it goes without saying that I’m also not allowed to go thrift shopping while in treatment which is putting a huge downer on the days I’m feeling better. I’m basically supposed to just hang out at the house and wait and wait and wait until treatment is over in order to preserve my health. It is hard, frustrating, and incredibly isolating.

Tomorrow marks my 3^rd chemo treatment. After that I will only have one more A.C. treatment and then I’m halfway done! Even better, I’ve been told by my doctor and nurses that the Taxol treatments are much much easier as far as the nausea and fatigue go, so I’ll be ¾ of the way done with the hard treatments! My final chemo treatment will be on Thursday, May 15^th. I’ve started a countdown that is putting me at 70 days until my last go. Even better, two weeks after the last treatment, (how long it should take me to start feeling normal again) is my birthday! I’m very excited that all of this crap won’t be following me into another year of life; one year was quite enough, thank you. I don’t know what I’m going to do to celebrate but rest assured it will involve froyo! It seems like such a long ways away from now, but its only two and a half months, and I’ve dealt with worse for longer. Aside from some very understandable frustrations, this whole ordeal has made me very thankful. I feel so lucky I caught this disease while it was in an early state, and that I’m young and resilient enough to fight it all off with success so far. Yes, I get sick, I get tired, and I have lost my hair (I’m super bald right now, it’s crazy), but I’m alive and still going strong. One of the chemo nurses told me something during my first treatment that’s really stuck with me and given me perspective on the whole thing. She said that feeling sick and having your hair fall out is just a sign that the chemo meds are working everywhere in the body. So I take all of the downs simply as a physical reminder that chemo is indeed working and I will survive this whole crappy ordeal.

It sucks, but I am stronger than cancer!