Treatment 5 went relatively well with no real issues to speak of, besides the normal side effects that I’ll speak to in the rest of the post. I saw my oncologist while I was in the infusion clinic, and we briefly discussed what will happen over the next couple of months. He really wants to hold off on talking specifics until we get to the end of chemotherapy and know whether any cancerous cells remain, so the plan is to have my next (and last!) treatment in three weeks as usual. About a month after that, I will have a PET scan to determine if any cancerous cells remain. If not, I will go into the post-treatment management/remission phase. If there are still cancerous cells present, I will begin radiation.
About 50% of patients in his service with a tumor that started at approximately the same size as mine have had to do radiation therapy – I’m hopeful I fall in the other 50%. From what I understand, the fatigue due to radiation is even more intense than the fatigue I’m feeling due to chemo, although it’s hard to believe I can be more tired than I am now. Obviously, I would much prefer to go into maintenance/remission than radiation treatments, but no matter what happens over the next few months, I know the end of all this is in sight.
There are a number of other side effects that I deal with due to chemo in addition to hair loss. I’ve been relatively lucky in that most side effects have not been that intense. I think some of this has to do with my relative good health and age prior to my diagnosis.
At any rate, I thought it might be informative to talk about the general side effects that I have with each treatment. For any cancer patients who might be reading – please know that chemo affects everyone differently so this certainly is not the be all and end all of side effects, even for R-CHOP specifically. In fact, some of the best advice I received prior to beginning treatment is to not read into other patient’s chemo “stories” too much, because it can be very different for everyone, even patients who are relatively similar in the type of cancer they have, the chemo they receive and their profiles prior to diagnosis. However, I do think it helps to know generally what some of the hurdles are.
Nausea/Vomiting – Other than hair loss, this is probably the best known side effect of chemotherapy. R-CHOP typically causes about a 48 hour window of nausea and possible vomiting post treatment, although I only feel/get sick the night of the treatment. In recent years, a number of anti-emetics have been developed that help curb nausea and vomiting significantly. I receive a dose of Zofran right before treatment through my IV and then I take Compazine over the next 48 hours at home. Generally speaking, these medications do help, although I still do feel nauseous and sick the night of my treatments and they don’t help much when you throw them up right after taking them. That said, I would hate to think how I would feel if I didn’t have these medications.
Fatigue – This is the side effect I feel the most day to day, especially now in the later rounds of treatment as the chemo builds up in my system. This isn’t so much a feeling of sleepiness, although I have become quite cat-like in that I can easily curl up in the recliner in our living room and fall asleep in about 10 seconds. This feeling of fatigue is more just an overall body exhaustion where it’s become a struggle sometimes to walk up a flight of stairs without feeling completely winded (thank God we live on the first floor of our apartment complex). Basic errands have become something I really have to plan for so that I can do them when I’m feeling most energized, although the fatigue just hits me like a ton of bricks at random times, so it can be hard to plan. If I go food shopping and forget an item at the other end of the store, there’s no way I go back for it now – I just leave it for the next trip, because I’m just too tired most of the time to go back. I’m not going to lie – I would do this out of laziness before I was diagnosed with cancer. Now I just have a better excuse to be lazy.
Dehydration/Digestive Tract Issues – I’m not going to into gory details here, but I’ll just say that chemotherapy dehydrates your entire system. Your skin, lips, cuticles, and the inside of your digestive tract (including your mouth – I have dry mouth like you would not believe) all become very dry. I have to be unbelievably diligent about drinking AT LEAST 64 ounces of fluids everyday, if not more, to prevent my GI tract from getting too dried out and I’ll just let you imagine what happens when things dry out too much. I am taking a bunch of medications to deal with this side effect. Although, if you’re not careful, things can swing in the opposite direction as well. Basically, between GI tract issues and the amount of water I have to drink every day, I can’t be very far from the bathroom at any given point in time. I also have to continuously moisturize my skin and be really careful about brushing my teeth often. The dry mouth can cause mouth sores that can become painful and infected. Thankfully, I haven’t had any of these bad boys.
Metallic/altered taste – After chemo, I usually experience a weird metallic taste in my mouth for at least a week or so. Many things have an altered taste now through the entire round. It’s quite odd to know what something should taste like, only to have it taste completely different. This is a relatively minor thing to deal with as I know everything will go back to normal once the chemo is done.
Peripheral neuropathy – One of the main side effects of vincristine (one of the more effective chemo drugs in R-CHOP) is peripheral neuropathy, which essentially means that your fingers and toes may become numb/tingly. I’ve only experienced this intermittently and it hasn’t been particularly strong. There are some days, however, where it’s more intense than others which generally results in butterfinger syndrome until the feeling comes back. The neuropathy has now extended to my teeth, so they’re really hot and cold sensitive. I can get around this fairly easily, though, by letting food/drinks cool off or heat up before I start to eat/drink.
Neutropenia: Chemotherapy kills off all of the fast growing cells in your body, including the white blood cells, specifically neutrophils, that help to fight off infection. These cell counts will drop off at a certain point in each round, which varies for everyone. My “nadir”, or low white blood cell/neutrophil count period, occurs from day 10-16. I’m immuno-compromised during this period, so I need to be more careful than usual about exposing myself to infections/diseases, etc. I’m pretty obsessive about washing and sanitizing my hands all the time.
I also have to go on what is called a neutropenic diet. This means that I cannot eat uncooked/undercooked meats, raw/thin skinned fruits/vegetables, yogurt containing live cultures, veined/goat cheeses or cheeses containing uncooked vegetables, and cold cuts, among other things.
I’ve struggled with my weight for years, and in trying to see the bright side of things, I thought maybe I would actually lose weight while on chemotherapy. Prior to being diagnosed, Jeff and I changed our diets dramatically and I lost about 35 lbs. Our new diet included a lot of whole grains and, more importantly, a lot of fresh, raw fruits and vegetables. The neutropenic diet now takes those out for me for a good portion of each round.
In addition, because of the weird metallic taste and lack of appetite that chemotherapy can cause, my oncologist and primary doctor told me to go ahead and eat whatever I’d like when I feel up to it. I’ve basically taken this as carte blanche to eat everything I hadn’t eaten for the past year. Ice cream or sherbet? Sure! Burgers and fries? Absolutely! Dessert after dinner? You betcha!
The upshot? Rather than losing weight like most chemo patients do (a potential benefit for me), I’ve actually gained 10-12 lbs. (Sigh…) I know it will come off easily, but it’s still demoralizing. I keep telling myself that it’s the prednisone that’s making me eat more than normal, but that’s just an excuse. Every now and then I get a hunger pang at a weird time that’s probably due to the prednisone, but I know that my eating habits since I’ve been diagnosed are really just due to me focusing solely on the cancer/chemo and not on my diet quite as much. I’ll easily go back to eating well as I did before and I know the weight I gained will come off. Let’s just say I’m wearing a lot of sweats right now.
Fortunately, I haven’t contracted any infections during the neutropenic state of each round. This is actually the most dangerous potential side effect for most cancer patients. I have to be really mindful of my temperature. If it ever climbs over 100.4 degrees F, I would have to call the cancer clinic and most likely would end up in the hospital for IV antibiotics. Complications due to infections are potentially life threatening, so the support I’ve received from work to be on medical leave that has allowed me to stay home during my treatment has helped me stay infection free thus far.
And other scary things…
As if that all wasn’t enough, there have been a few moments throughout this process where I’ve been reminded of how sick I really was/am.
After my fourth treatment, my oncologist and I talked about the reduction in size of my tumor from 12-13cm to about 5cm. He said, “You know, I didn’t want to say this while you were in the hospital, because we were being so progressive but you were really sick. That was one of the fastest, most aggressive tumors I’ve seen in awhile. I’m really happy with this progress that we’re seeing given the starting size of the tumor.”
This made me think about how I perhaps glossed over how sick I was in the hospital since I was determined to only think positively. As I mentioned in an earlier post, my tumor was so large to start that my doctors didn’t feel comfortable letting me go home until after my first treatment. Frankly, I didn’t feel comfortable going home with knowing that the tumor could occlude my trachea or esophagus or damage my lung. Fortunately, nothing along those lines actually happened but it could have been terrifying had this happened at home. This further highlights how grateful I am that I went for a follow up appointment and that my doctors encouraged me to get the appropriate tests done before I left the hospital complex. Had I not done those things, I could have been in a much worse situation.
When you’re admitted to the hospital, a social worker or an intake nurse usually comes by to see if you have a living will, power of attorney, or other directives. Since I wasn’t exactly anticipating ending up in this situation at 30, I didn’t have any of this set up. This conversation didn’t really bother me, though, since I know it’s standard procedure.
However, once I was moved up to the oncology floor prior to my port placement, one of the doctors from my medical team came up to ask me about my wishes regarding resuscitation. They didn’t think an issue would arise where it would be necessary to know my wishes, but they wanted to make sure they had it on record, just in case. They also recommended that I discuss my wishes with my husband so that someone, outside of them, would be familiar with what I wanted.
I always thought I knew what my decisions would be regarding resuscitation, should I ever end up in a position where it was a possibility. Prior to being in this hospital, I couldn’t really bare the thought of being shocked back to life or having a tracheotomy tube placed in my throat. However, when you’re 30 and in a position where this could be your only option of coming back from an unforeseen issue and potentially be given back the rest of your life, you begin to have second thoughts.
In fact, I told the doctors that I would want them to give it their best shot to bring me back. However, the last thing I wanted was to be a burden to my husband and my family, so I would not want to be maintained on life support should it get to that point and there didn’t seem to be hope that I would come back essentially fully functional. Sounds antiseptic, right? But this is how I felt like I had to process everything. I couldn’t be emotionally involved and think about how gut wrenching this all would be for my husband and the rest of my family. I had this conversation with Jeff, in person, as soon as I could. I wanted him to know exactly what I wanted and was sure to communicate this clearly so there was no question for anyone. Fortunately, we didn’t need to institute any of these plans.
The scariest thing for me is probably somewhat surprising – discharge from the hospital, time to be bounced from the big house. You would think I would be ecstatic to get the heck out of there after nine days, but actually I was really, really nervous. I had just finished up my first treatment the night before and for the past week+ time, I had roughly a dozen doctors coming into my room several times a day to check on me, including the head of my medical team and my oncologist. I never felt like anything too bad would happen if I was in the hospital. My nurses were just a button push away and they came with all of my medications at the right times and right dosages. The nursing assistants monitored my heart rate and blood pressure. I didn’t have to worry about much – I just had to lay there, watch TV, surf the internet and be carted off on a gurney for this test or that scan whenever anyone told me to go. All my meals, as mediocre as they were, were brought to me in bed. This whole hospital thing wasn’t looking so bad. There were no appointments to schedule, no prescriptions to fill, and no real life responsibilities to add to taking care of myself while at home with cancer.
It took a few days of lots of sleep, but I ended up being able to manage everything at home after a few days of adjustment. I didn’t feel great, but it wasn’t too tough to figure out what medications to take and when. I enjoyed being at home in our bed again, watching my own TV, catching up on DVR’d shows and eating a bit of food from our home. Now, I try to avoid having to go back into the hospital but I’m happy that I was there through the initial diagnosis and treatment. It made me feel more secure and taken care of.
A note about my overall tone and a lesson learned during my last treatment…
So many of my friends and family have commented on how much they enjoy reading my blog because of my sense of humor about everything I am going through. I’m glad to bring joy to others and I think it’s important to show that cancer isn’t necessarily something to be completely feared.
However, I believe that I have the luxury to have a good sense of humor about what cancer has thrown my way, largely because I know that I have a curable form, and especially now that I know that R-CHOP is, so far, successful for me. As I’ve said before, I’d like to think that I would be just as positive if I had a form with a different prognosis. I honestly hope I never have to test this theory out.
Believe me when I say with all sincerity that I do not take this disease lightly. I just choose to see the comedy in the situation where I can and approach my treatment with as much positivity as possible. I still believe strongly that my positive attitude, and the positive attitudes of those around me (including my parents and sister, my husband, my friends and my doctors/nurses) have contributed to my overall good prognosis and treatment. It doesn’t take much, though, to remind me how fortunate I am and how difficult this disease is for so many people.
My infusion clinic is composed of open pods of four rooms. This does allow some communication between patients, which is nice, but it can also mean that we’re exposed to difficult moments experienced by others in the pod.
When I was in for my last treatment, an elderly gentleman (I would say in his 70s) came into the pod for the start of his next chemotherapy round. He sat down in the chair, obviously frustrated and expressed his frustration to his nurse who shares the pod with mine. He didn’t really seem to understand what was just discussed in his doctor’s appointment prior to coming to the clinic. He was unsure as to why he was undergoing this specific chemo again and his doctor mentioned something about a CT scan but the gentleman couldn’t understand why they were doing chemo before the scan. He asked the nurse to hold off on starting the chemo until his wife and daughter came up so the nurse could talk to them.
When they arrived, they seemed just as frustrated and unsure of the situation. His nurse decided to take a look at the notes that his doctor entered after the appointment, and as she read them, I heard her say, “Oh, crap” under her breath.
She asked the gentleman to come to the computer and read the notes with her. Apparently, he has a third recurrence of esophageal cancer. He’s undergone two different rounds of chemotherapy (the first was more successful than the second), surgery to remove a portion of his esophagus, radiation, and he just completed a clinical trial that seemed to be unsuccessful. CT scans showed that the cancer had recently metastasized to his liver and his doctor was prescribing the chemotherapy that worked on his esophageal cancer initially, in the hopes that they could at least curb that. He ordered a PET scan to see the extent of the metastasis.
This was obviously not good news for the man or his family. He went back to his room and said, quite clearly, “I cannot go through this again”.
I’ve only been through a mere fraction of what he has been through and I could completely understand that initial reaction. Chemo is tough enough – to have to go through it three times, plus radiation, surgery and a clinical trial, is not a small feat.
As soon as he said that, I could hear his wife and daughter start to cry. He looked at them both, probably knowing how much that comment hurt. His nurse said to him, “You have two beautiful women who are sitting here with you and clearly love you very much, but whether you go through this treatment again has to be your decision. You cannot do it for anyone else but you and if you make the decision to go ahead with it, you’ve got to follow it all the way through – it’s the only way it will have a chance of working for you.”
(The hematology/oncology nurses and doctors are truly a special breed of health care worker. I can’t imagine how many times this nurse has had to give similar news to her patients, and I’m sure it doesn’t get any easier.)
This was a reminder that cancer is a weird, twisted, and evil disease. It can hit one person and be a relatively straight forward case that resolves itself quickly. It can hit someone else and just be absolutely relentless, returning again and again, despite everyone’s best efforts to keep it at bay. Sure, age, prior health and risk factors play a role but certainly people like him have had an easier time and people like me have had it much harder.
The man was quiet for a moment, and then said, “Let’s get going with this. I want to do the treatment.” He then began to crack jokes with the nurse, his wife and daughter, telling them they couldn’t get rid of him just yet. I could tell he was a feisty man, and I felt like if he could joke around, then it was okay for me to do the same.