My Truth About Cancer

When I started this blog, I swore I wouldn’t stop updating on a regular basis once I was remission and feeling like myself again, because being a cancer patient/survivor doesn’t end with remission. One of the many truths that I’ll share in this post, though, is that you have to carry on with your “normal”/pre-cancer life once you go into remission. You have to go back (hopefully) to work, you can go outside and be around people again, and you are expected in some way to pick up where things left off. Believe me, I’m grateful to be able to do those things – it just means I haven’t had a lot of time to update the blog lately.

Since my last post, I had standard blood work and a check up with my hematology oncologist, and all is well. My counts were good – I’m still NED (no evidence of disease). For the first time since November of 2012 when I was diagnosed, I feel like myself. My energy level is good and the side effects are relatively minimal. My oncologist predicted it would take between 6-12 months after completing radiation before I felt relatively normal, and once again, he was right on the money – it was about 9 months that I noticeably felt better day to day. This is all great news, indeed. I’ll have another CT scan in July, and hopefully, I’ll get the news that I’m in remission for a year!

Even though I’m in remission, I am still involved in the young adult cancer community and raising awareness when/where I can. I’m particularly sensitive when I see stories on social media platforms that stretch the truth or flat out lie about cancer, as if scientific research isn’t heavily based in years and years of work and data collected, or as if everyone’s experience with cancer is uniform.

That’s why I was especially enraged when I saw a post going around Facebook and Twitter claiming that “John Hopkins” had released a “cancer update” last week. In the mid-2000s, this same update was circulated via email to the point where Johns Hopkins’ Kimmel Center, one of the most prestigious cancer centers in the world, had to release a statement explaining that this email was a hoax. Their release does an amazing job, not surprisingly, of dis-spelling the assertions made in this email point by point. I would encourage anyone who is interested in the details to follow the link provided by the Kimmel Center and read about the science behind cancer. In short, the main point of the hoax email was that traditional therapies (surgery, chemo and radiation) do not cure cancer, and cancer patients should try to manage the disease by altering their diet, among other truth stretching tidbits.

This thing has reared it’s ugly head yet again, and it’s driving me insane. Why give such a thing any credence by addressing it at all? I’ll tell you why – because when I was diagnosed and went “public” with my diagnosis, I received more than one email/Facebook message sharing information pulled from this stupid thing. Because of this hoax email, people I know suggested that I should explore other more natural/holistic options before “poisoning my body”. In fact, people I know told me stories about their friend’s husband’s co-worker’s son who had a completely different form of cancer from me. He was going to die(!), but he drank this herbal tea, extracted from the stem of an exotic melon or some such thing, and now he’s cancer free. I should totally drink the same thing and my cancer will go away!

Well, golly gee, problem solved!

I also got some variation on the “Don’t feed the beast by eating sugar!” warning – the thought behind that being that cancer cells “eat” sugar. If you eliminate the sugar in your diet, then you will starve the cancer cells and voila! Cancer free! The truth is that all cells metabolize sugars for energy, and it’s not really straight up sugar. It’s complex or simple carbohydrates, among other things, in anything that you eat that cells will metabolize. There’s no possible way to cut this out of your diet, unless you didn’t eat anything. At all.

By the way, guess what I ate first after my diagnosis? A big, delicious, chocolatey brownie. Because I was just diagnosed with cancer, that’s why.

Here’s the thing – spreading these kinds of anecdotes may feel like you’re doing the right thing. At it’s core, this email is just preaching the benefits of living a healthy lifestyle, right? The problem is, messages like this make cancer patients, or at least this one, feel like they neglected to do one or more of these things, which is why they got cancer in the first place. Plus, when you’re literally staring death in the face, the last thing you need is someone telling you about some cockamamie home remedy or that the entire cancer treatment system (so-called traditional treatments) is not going to work for you, or worse, is going to hurt more than help.

I should also say here that all of this, obviously, is my opinion/view point. I don’t hold any hostility towards patients who choose to go with these alternative routes. In fact, I know of a number of patients who chose them after traditional therapies didn’t work. I also know of patients who completely chose the holistic route based on their previously held beliefs, regardless of an email going around. Often times, these patients chose to see a naturopathic doctor, but at least they were under the care of a physician with training and education. I say that each patient has to make their own decisions on what is best for them and I don’t want to chastise patients who choose to go with the alternative routes. I do get frustrated when people who aren’t in any kind of position to be giving medical advice tell someone who is very sick to consider something that flies in the face of what their doctor tells them – just to avoid “poison” – when there is no medical basis in the advice. That is a scary thing.

So, keeping in mind that no one patient’s experience is like anyone else’s, here are MY truths about cancer:

1. There is NOTHING that I did or ate or drank that solely caused cancer (short of being a Caucasian woman in between the ages of 20-40 – the most likely group outside of the elderly to be diagnosed with DLBC NHL with a primary site in the mediastinum). I was 30 when I was diagnosed. There is almost nothing that I could have done in that relatively short period of time that caused my cancer occurrence. Believe me, I have asked my oncologist about this on multiple occasions, even though I know what the answer will be every time. Not a thing that I did – not standing in front of the microwave while it was on, not drinking from a plastic bottle, not eating a boatload of sugar every day (or even now and then), not using a cell phone, not drinking red wine or coffee, not NOT drinking red wine or coffee, not eating red meat, white meat, or any other kind of meat, not eating dairy (the horror!), or eating said dairy from a plastic utensil – has been directly shown to give someone my age a form of cancer. It’s just flat out not enough time to do that kind of harm. My case of cancer, and likely those of a lot of young adult patients (of which there are  about 70,000 diagnosed every year), was likely due to a combination of factors. I will readily admit that I don’t live the healthiest lifestyle. Was this a factor? Sure, possibly. But it definitely wasn’t the sole cause. I am sure that a good deal of it was just random genetic mutation and a whole lot of bad luck.

2. Traditional treatment did some horrible things to my body. The physical side effects of receiving traditional treatments – in my case, chemotherapy and radiation – were difficult and very real. Hair falling out was the least of my concerns, quite frankly. That was relatively painless. My scalp was sore for a few days prior and then my hair started falling out in clumps when I showered or brushed my hair. Sure, it’s superficially embarrassing to be a bald woman and it’s a daily reminder that you have cancer, but it’s easily covered up.

There were far worse things to tackle – biopsies, minor surgeries, horrible tastes in your mouth, fatigue from both chemo and radiation that was damn near overwhelming, random joint and bone pain, short term memory loss, and difficulty breathing/swallowing during radiation.

For me, though, the GI tract issues were by far the worst issue, at least physically. Nausea, vomiting, acid reflux, diarrhea, and constipation – it was different every day and there was no way to predict what would come next. Although I haven’t written about it, I will just say that having to give myself an enema was quite possibly the lowest point throughout the whole process. There is nothing like that experience to make you feel like a child again, and I wouldn’t wish it upon anyone. As if having the conversation with my oncologist (who I knew for about a month) wasn’t bad enough – “Gee, doctor, I haven’t pooped in about a week and things are getting mighty uncomfortable”. He prescribed me medications – none of them worked so there was only one option left. The only reason I could muster up the strength to do it myself was because I knew that I would end up in the hospital having someone else do it for me if I couldn’t pull the proverbial trigger. Absolutely horrifying and embarrassing. I even hate to write about it, but the truth of the matter is that this kind of stuff happens when you have cancer.

3. The emotional toll cancer, and treatment of it, takes on your life and relationships is just as bad as the physical toll, if not worse. Nothing shakes you to the core like hearing you have cancer. Or learning that the life saving treatment could prevent you from being able to have biological children of your own (although this is unlikely in my case) and that you might not have the six weeks to wait (or the exorbitant money) to go through the embryo preservation process. You are forced to face the possibility that you might not live long enough to share another holiday with your family. That’s certainly not a thought that you expect to have running through your head at 30 and it changes how you perceive the rest of your life.

3. There are long term physical and emotional issues on the horizon. I’m not entirely sure what the long term emotional issues will be, although I know for sure that I’m still sorting through everything and probably will be doing so for a long time to come. I constantly think about things like: who was there for me when I needed help? Who wasn’t? Why? Will my entire life always be lived in fear of a recurrence or secondary cancer? Will I ever be able to talk to someone who had or has cancer without feeling an immense amount of anxiety? I don’t know, but I do know that as a young adult patient, these thoughts could be something I have to deal with for a long time.

Because I was diagnosed at a young age, the possibility of a secondary diagnosis – lung or breast cancer – is a real possibility. However, chemo, and especially, radiation are much more advanced in their targeting capabilities now than they were years ago, contrary to what this hoax email would have you believe, so it’s tough to know what the likelihood is of that happening. More uncertainties, for sure.

4. I have some positive personal truths about cancer, too. Going through the diagnosis and treatment caused me to slow down, both physically and mentally. This period of my life was the first time in a very long time when I couldn’t do anything but relax and rest and I was remarkably calm. I had to relinquish control very quickly to my oncologists and there was some sense of relief in that. In a twisted way, I enjoyed having an excuse to just sleep, move slowly, and only do what absolutely had to be done. There were no feelings of guilt if I didn’t attend an event or do this, that or the other thing. That was so wonderfully freeing. No one had any expectations of me other than to focus singularly on my treatments and taking care of myself. I could read or watch TV without feeling an ounce of concern about what wasn’t getting done because I was doing that instead. I was also so exhausted that my mind just couldn’t go a mile a minute, which was pure bliss for someone with OCD on top of cancer.

5. It sounds cliche but having cancer and going into remission has quite truthfully encouraged me to be thankful for all the good things in my life, to focus on what is important and not take a thing for granted. I know now how quickly life can change, so I’m grateful for every good experience, opportunity, and relationship in my life. I’ve also tried to maintain some sense of calm, although the farther out I am, the harder it is to keep it up.

6. But my most important and “truthiest” truth about cancer? Traditional therapies, no matter how grueling in every possible way, saved my life. Six rounds of RCHOP and 22 radiation treatments to my chest took a lot out of, and from, me, but they gave me my life back. If I had to go back and do it again, I wouldn’t change a thing.

And that is my truth.

 

What a difference a day makes…

Short of the day I was diagnosed, I think Wednesday (the day of my last post) was the lowest point in my cancer treatment. I was upset and beyond frustrated with the whole process.

However, my treatments have been much better over the past few days. Apparently, there were some equipment issues earlier in the week and a few patients scheduled just prior to me who have quite involved treatments that took longer than anticipated. On Thursday, I was in and out in about half an hour and on Friday, the radiation therapist was waiting for me outside of the dressing room and we went directly to the treatment room. I walked in the clinic at 2pm and was on my way home by 2:20pm. Next week, I switch to 11:00am appointments, so hopefully this speediness will continue.

More importantly, I met with my radiation oncologist and his resident on Thursday, and they provided me with a summary of my treatment program. The resident put the program together and it was approved by my oncologist. They presented it in grand rounds to the entire radiation oncology department and it was confirmed there as the best course of action. Because my mass was quite large to start and the active area and scar tissue is still relatively large and in an area overlying critical organs, my radiation oncologist decided it would be best to also consult with a doctor at Harvard Medical School who is an expert in the field of radiation oncology specializing in large masses in the chest cavity. She also agreed with the program, and as was the case with my hematology oncologist, I greatly appreciated their ability to acknowledge that they sought multiple opinions about my case.

Ultimately, the program includes 22 treatments total. The first 17 treatments (including the four I had this past week) will focus on the entire area of scar tissue and the area that showed up as active on the PET/CT scan, about 5cm. They are treating the scar tissue to ensure that any possible rogue cancer cells in that area are killed off. The final five treatments will focus solely on the active area. The program is fairly complicated as the total dose of radiation and the dose per treatment had to take into account the known values of radiation that the heart and lungs can withstand as well as the fact that the type of chemotherapy I had a few months ago, RCHOP, can negatively affect heart function on its own.

Ultimately, I’ll be done with radiation on June 13th as the treatment days can’t occur on weekends or holidays. My radiation oncologist feels that it won’t make sense to do another PET/CT scan for at least 2-3 months after the completion of treatment. Radiation inflames tissues and can cause false positives on the scan if it is performed too soon after the completion of treatment. It looks like I won’t know for sure whether I am cancer free until the middle of August or September, though my radiation oncologist is very confident that this program will eradicate the remaining cancer cells.

I’ll see my hematology oncologist on Tuesday, and I have a number of questions for him, including when he thinks I can return to work given that we probably won’t do a scan until August or September. I’m fairly certain he will give me the go ahead to go back for the fall semester once my radiation treatments are done.

Of course, the question that I have to ask is what will happen if the scan does not come back clean. I’m scared of the answer in some regards but I need to know what the plan will be in that case and how I can balance that with the rest of my life. My radiation oncologist’s optimism gives me a good amount of optimism as well since I know oncologists are not prone to saying outright that they’re very confident in good results unless that is, in fact, the case. I’ll put my faith behind that as well.

Lesser of two evils – my chemotherapy treatments

Since I’m currently staring down the barrel of the gun at treatment #5 in a few days, I figure now is a great time to describe the treatment process.

My first treatment was given in the hospital a few hours after my port placement and diagnosis. My oncologist felt this was important to monitor my overall reaction to chemotherapy and to make sure I didn’t experience tumor lysis syndrome. Tumor lysis syndrome occurs most commonly in blood cancer patients with large masses when the chemotherapy breaks down cancerous cells rapidly, and the contents of the cells are dumped into the blood stream. This can cause renal failure, heart issues, paralysis, and seizures, among other things. Sounds pleasant, right? To combat this, I was placed on allopurinol to protect my kidneys and a continuous IV drip of saline, which made me use the bathroom every half hour or so. I had clean kidneys but no sleep.

The chemotherapy treatment I receive is called R-CHOP, an acronym for rituximab (an antibody), cyclophosphamide, doxorubicin (whose chemical name is hydroxydaunorubicin), vincristine (used to be called oncovin), and prednisone (a steroid). I receive the R-CHO portion of the treatment via my port and take the prednisone as a pill on the first day of treatment through day 5 of the round. Each round is 21 days, so I receive my infusion treatment on day 1, continue with the prednisone through day 5, and recover for 16 days before starting it all again.

That first treatment in the hospital began at 4pm and I stayed up until it was done around 11:45pm. They started off with the rituximab, and I was supposed to receive about 900mL of it at a maximum rate of 400mL/hour but they have to build up to that rate. Some people have an allergic reaction to the antibody solution and so they start you on a very slow dosage and monitor you closely. My nurse told me to let her know if I began to feel any itching sensations, especially in my throat, because while it’s rare, some people have been known to go into anaphylactic shock. I wondered why this antibody was used if people have life threatening reactions to it. Rituximab was approved in the US in 1997 and kills both the healthy and malignant B cells in the blood, thus making NHL a curable disease once all of the malignant B cells are killed off. So, although the side effects are potentially hazardous, not taking rituximab poses a much greater risk to the life of the patient.

I’ve often heard from other cancer patients that receiving chemotherapy is merely the lesser of two evils. You are being treated for a disease that can kill you with drugs that wreak havoc on your body and are potentially lethal on their own but have the ability to save you in the end. Because I was so deeply in the mindset that I wanted to start treatment right away, it didn’t cross my mind that this whole crazy situation applied to me until the nurse said my medication could cause anaphylatic shock.

I was doing well with the rituximab for awhile until I was up to a dosage of about 200 mL/hour. All of the sudden, my scalp and back were itchy. I frantically searched for the nurse call button and asked if my nurse could come to my room ASAP. In the meantime, I walked as fast as I could to the bathroom, given that I was hooked up to a medication pump by all kinds of tubes. I looked into the mirror, and I had a rash all over my scalp and my back.

The nurse came in and she decided to roll the dosage back to 150 mL/hour and luckily, everything calmed down. No anaphylaxis, no more hives.  Although my nurses encouraged me to sleep after that, I fought it off because I really wanted to know what else would happen during the rest of the treatment. I don’t know what I was expecting, but after the rash, I didn’t want to miss anything else. Since you always hear about chemotherapy causing nausea and vomiting, I suppose I mainly thought I would projectile vomit at some point, Exorcism style.

It took another couple of hours for the rituximab to finish up. When it was done, my nurse hooked up the cyclophosphamide, which takes about an hour to drip in. No reactions there. Then came the doxorubicin, which is pushed through my IV from a syringe and finally the vincristine, which drips through the port for about 20 minutes. And like that, I was done with my first treatment with few issues. I tried to sleep that night, but it was next to impossible because I was waiting for some kind of horrible reaction that never really came. My oncologist told me that the first treatment was usually the easiest to handle, but being that I was the type of kid who got motion sick in the car, I thought for sure he would be wrong. (I will be honest, my weak stomach hasn’t been reserved for just childhood. I got seasick on a speed boat while I was on a parasailing trip with my mom for her birthday just a couple of years ago. Thank God I didn’t get sick while we were parasailing. I only tossed my cookies in front of the crew and six other passengers when we returned to the boat . By the way, I was a marine biology major in college. You would think I would be good on boats, and I was okay when we were initially going out of the harbor, but not so much in the open ocean when the captain was hitting waves so hard the boat went air born. My stomach wasn’t amused.) Anyway, the night passed uneventfully, and I was released the next day.

Since then, all of my treatments have occurred in an outpatient facility in the hospital. My visits begin with a trip to the phlebotomist, or the vampires, as Jeff likes to call them. Chemotherapy inherently knocks down my white blood cell count at about day 10 through day 16 of the round. During this time, I’m prone to infection, although it can be avoided with precautions. We don’t want it to get knocked down to a dangerous level where contact with any bacteria will get me sick, though. If your count isn’t high enough at the start of treatment to ensure it won’t drop too low later in the round, you have to wait for treatment until the count comes up again, which is a real pain. Assuming my counts are good, I visit the nursing assistant who takes my vitals and then I see my oncologist to check in. We usually talk about new side effects that might have popped up since the last round and about the plan of action for the round starting that day.

From there, I head to my oncology nurse and her pod of four rooms, all containing patients with different types of cancer. Some, like me, only come in once every three weeks. Some poor folks come in everyday of the week for an hour or two while others still come in one day per week for a few hours. All getting different drugs, all treating different things. My nurse somehow manages to keep track of everything, responding to beeping pumps notifying her that someone’s done with their dose or there’s an occlusion in their line upstream or downstream. I must say that I cause these quite often since I somehow end up sitting on the tubes or twist them while watching TV on my iPad.

My nurse comes in and first accesses my port with a needle to set me up for the day. She gives me Tylenol and Benadryl. During my second treatment, she figured out that she could give me the rituximab at the highest dose allowed if she gave me Benadryl before the treatment started. I hadn’t taken Benadryl in a long, long time and shortly after having it drip through my IV, I realized that I was having trouble typing anything intelligible on my iPad. Next thing I knew, I was dozing off and in a deep sleep, only to be woken up when a nursing assistant came by to take my blood pressure. This pattern has repeated throughout all of my treatments. I usually wake up in time for lunch right at the end of the rituximab. After that comes the cyclophosphamate, which always goes off without a hitch.

Then, I’m reminded yet again of the inherent conflict of the factors in this situation. Doxorubicin comes as a push from two very large syringes. To many cancer patients, it’s known as the “Red Devil” or the “Red Kool Aid” due to its bright red color. (As an aside, this turns your urine red for a day or two after treatment. After my first treatment, I had a minor heart attack when I used the bathroom for the first time as thought I was bleeding internally. Fortunately, I remembered it was just the “Red Devil”.) When I started chemo, several of the nurses told me that it might help to chew mint gum or suck on peppermint candies during treatment. I didn’t ask why, but I realize now that it is to avoid “tasting” the burning, metallic sensation that doxorubicin can give off in your nose and mouth. The really odd thing about doxorubicin is that my nurse has to wear a protective coat and an extra pair of gloves and puts a protective mat on my lap while she’s pushing it through my port because it can stain (not a big deal), and devilishly burn bare skin (kind of a big deal). How it doesn’t burn the inside of my body, I don’t know, but this is yet another reminder that while these drugs are miracles in a lot of ways, they also can do a lot of damage.

Once I get through the doxorubicin, it’s onto the vincristine for 20 minutes. At that point, I’m really itching to be done, but it feels like it takes forever for that last bag to empty. I pretty much stare at the IV dripping away for that whole 20 minutes knowing I am essentially home free after that. My nurse then flushes my port with heparin, another solution I can taste when it gets pushed through my port, and then it’s a race to get home before the nausea sets in.

All told, the process is about 7 hours from beginning to end, but at least I only deal with it once every three weeks. And I only have two more treatments to go!