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.

 

Holy fatigue, Batman!

Since my last post a few weeks ago, I have returned to work full time and I began teaching again last week. I am grateful to be up and about and back at work, although it’s been quite busy. Seeing my colleagues and being welcomed back with collective open arms has been amazing and it is energizing to be around my students again. Most of my students are highly motivated and energetic, which is certainly contagious to an extent. It’s also just good for me to get back into a routine. As much as I enjoyed being a lay about after I went into remission, it is time to become a functional member of society once again.

I’d be lying, though, if I said that the transition has been 100% smooth, and this largely has to do with the fact that I’m tired in a way that I didn’t even think was possible now that I’m recovering and working at the same time.

For those that don’t know, Jeff works an hour south of where we live while I work an hour to the north. We quite often leave the house at 8am (or earlier) and return around 8pm, assuming he doesn’t have an event at work in the evening. Under normal conditions, this leaves a couple of hours for us at night to cook, eat and clean up dinner, do some work/answer emails, and get ourselves ready for the next day before we go to sleep just to get up and do it all over again.

This schedule was beginning to wear on me before I got sick, and in a sick/twisted way of looking at things, cancer gave me a break from that hellish commute and schedule. Now that I’m back at work, talking to colleagues/students all day and teaching three 3.5 hour lab sections a week wherein I’m often on my feet/talking for a majority of the time, I’m pretty much the walking dead right now. I might look okay on the outside, but I feel like this:

walking dead zombie

The fatigue I feel at this point is essentially a combination of the types of fatigue I felt while in treatment. When I was undergoing chemotherapy, I felt like I had weights attached to my arms and legs all the time and it took a tremendous amount of effort to move from place to place. In fact, the thought of even getting up and out of the recliner was overwhelming at times. During my radiation treatments, that feeling was replaced by being so sleepy. Now, I have an amalgam of those two things going on – it takes an extreme amount of effort to move, and then the second I stop moving again, I want to sleep. That’s Newtonian physics for you – a body in motion stays in motion and a body at rest stays at rest.

I’m finding that I can get through about 2/3rds of my lab classes before my body begins to scream at me to sit down and chill out for a second, and I certainly don’t recover by the next morning as I did before I got sick. I’m learning now that I need to rest somehow more throughout the labs, although I find that if I sit down, my legs begin to throb and I have a tough time getting going again. I almost feel like I’m better off just staying “in motion” throughout the entire lab, letting adrenaline carry me through, and then crashing at the end of the class in my office. To that end, I’ve covered up some of the windows and got a comfy chair that enables quick cat naps when I need them. During my last class, I also tried to lean on counters and things a bit more as opposed to fully sitting down.

If I had a dollar for every time someone has told me not to push myself too hard, I wouldn’t need to work anymore. The problem is that It is very difficult to figure out what my body can handle until I try and then moderately succeed, crash and burn, or something in between. I’ve been relatively sedentary for so long now that it is difficult to figure out what “pushing myself too hard” is until it’s almost too late to pull back. At least I can get a sense of what works for me/what doesn’t and adjust from there. There are a few things I’ve learned so far, though:

1) Put a smile on your face and try to look pulled together even if you don’t feel like putting in the effort. Having cancer has taught me many things. One of the most important is the idea that you can’t control what happens to you but you can control how you react by having an overall positive attitude. Being positive generally makes me feel better physically and mentally and feeling good about how I look only boosts my resolve to have a positive attitude throughout my day. On top of that, I find that people react more positively to me and my ideas if I have a smile on my face even when I feel like crud on the inside. That said, keeping all of this up takes a lot of energy sometimes so it can be a bit of a double edged sword.

2) More practically, get rest whenever you can. I’ve learned over the past few weeks to take quiet moments for myself when I can. This could mean that I close my office door, turn out the lights, sit in my cushy chair and try to catch a few winks for 15-20 minutes. It could also be as simple as leaning up against the wall for a few floors during a solo ride on the elevator. If you’re feeling out of breath after you climb a flight of stairs and don’t want anyone to think you’re struggling a bit, read some flyers on the cork board in the stairwell. Why feel like I need to hide that I’m hobbling along? My co-workers have been beyond supportive and really have, in some cases, become like a family away from home. I don’t want anyone to worry that I’m not doing well (I’m really fine – this is all part of the recovery process and is common for most patients) and I really would like to feel “normal” again, as much as that is possible. I also don’t want people feeling like they need to help me more than they already have, and that was more than generous.

3) As a colleague recently reminded me, I don’t need to do things the same way I did before I got sick to have a successful return to work and the rest of my life as I knew it. For example, work emails should, of course, be answered in a timely manner but I should not feel the need to answer student questions at midnight or even the instant they hit my inbox. Essentially, I shouldn’t feel pressure to return to life as I knew it before cancer until I’m ready, if ever, and life will go on without a hitch for everyone else.

Fatigue isn’t the only issue I’m dealing with – chemo brain is becoming more and more of a problem since I’ve returned to work. I’m thinking it may be more apparent now that I need to use my brain on a regular basis. I’ve always had trouble remembering students’ names. That is next to impossible now. I’ve also been forgetting seemingly basic and simple words. There are also times where I have trouble focusing or forming coherent thoughts when writing emails to students or talking to them in class. In probably the most scary and unexpected event so far, I recently forgot how to hold a fork and knife in order to cut my food. I couldn’t remember how I held them – is it fork in the left hand and knife in the right or vice versa? Do I cut in back or in front of the fork? I honestly couldn’t remember this at all, as if it was my first time cutting up my own food. My muscle memory had momentarily escaped me. I ended up having to put the utensils down (probably best for the safety of all around me) and allow my brain to reset itself. Fortunately, everything came back and I enjoyed my chicken Caesar salad. Still, it was a terrifying feeling and I’m definitely going to talk with my hematology oncologist about it during my next visit as I think it might be something that needs to be addressed in more detail.

I also can’t help but get anxious about every sudden muscle twinge in my shoulders or when I  break out into a sweat or have sudden feelings of exhaustion. (This last point means I’m always in a minor state of anxiety.) With every instance of any one of those things, I can’t help but immediately think, “Oh my God, IT is back. The cancer is recurring.” I know, in my rational mind, that while my symptoms were similar to those, they were much more extreme and I felt absolutely awful but my irrational mind can’t help but catastrophize everything. It is a difficult place to be mentally and I don’t know how much I can expect it to change.

Despite all of this, though, I’m very happy to be back at work and thinking about all of these things as cancer patient in remission. There are certainly worse problems to have and I know it will all get better over time.

Being a Young Adult (YA) with Cancer

In the cancer world, I am considered a young adult patient (YA; someone diagnosed with cancer between the ages of 18-39).  In contrast, pediatric patients are those under 18 and patients who are 40+, I suppose, are just ‘cancer patients’ – no special labels for them. Over the past few months, I’ve experienced many things that YAs with cancer have to deal with that might not be so common among pediatric and/or older patients and since I’m writing on this blog about what it’s like to be a 30 year old with cancer, I should probably touch on some of these issues. I’ve been able to reflect on them a lot more now that I’m done with active treatment, so here we go.

A jumping off point…recently, a column was posted in the Huffington Post.com’s Healthy Living section by a 20 year old woman named Elise Frame who was diagnosed with leukemia, and she equates being a YA with cancer as being in a sort of medical no-man’s land. We are treated in the adult center because of our age, although we face many of the same issues as pediatric patients (concerns about living a healthy life after cancer/avoiding recurrence) and older patients alike (job security, health insurance coverage, maintaining relationships).

I must admit that it sounds like I’ve had a much better experience in the adult cancer center at my hospital than Ms. Frame had at hers. We have psychologists and nutritionists who specialize in working with cancer patients that are available to us at any time. I’ve partaken in art and pet therapy while getting treatments (Coloring with crayons and petting furry dogs really does make you feel better when you’re getting chemo, by the way. You basically revert to a child-like state.). There are numerous social workers and patient advocates available to help you navigate the insurance maze, handle medical leaves, and applying for state aid. Most importantly, my doctors, nurses and therapists are amazingly caring and compassionate people. They seem to love their jobs and have gone out of their way to make me feel as comfortable as possible.

That said, being a YA with cancer has presented its own share of issues that may not be encountered by younger or older patients.

First of all, there’s the simple fact that as a YA with cancer, you don’t often see other patients in your age group at the adult cancer center. I was in active treatment for seven months, and over that time, I saw patients in the center who were relatively close to my age less than 5 times. Otherwise, I was typically surrounded by middle aged or, mostly, elderly patients. Not seeing anyone else “like you” can make you feel really isolated and circus side show-y as you walk around the clinic.

The one thing I craved during treatment more than anything else (other than sleep and to be cured) was to connect with people my age who were going through the same thing. The easiest place for a patient to connect to other patients is in their cancer center while they’re getting treatment. Even a brief conversation with a fellow patient to commiserate can be a huge pick me up in your day. While I didn’t mind chatting with Ethel about how horrible she feels and how her grandchildren are coming by to visit her in the clinic later on, it wasn’t the same as talking with someone my own age who was also getting treatment. When chatting with the elderly patients, I felt like I needed to put on a sweet smile and be overly polite when I really just wanted to talk to someone like I would one of my friends about how horribly sick I felt. As much as talking to my own friends and family helped in some ways, no one really knows what you’re going through as a cancer patient unless they’ve been through it themselves, making connecting with other YA cancer patients all the more important.

My cancer center has support groups that meet once a week or every other week, but it would be really nice if they had a YA specific group. I know of several centers that do this, but if this isn’t available to you, you have to seek out other avenues of support. Fortunately, a non-profit for YAs called Stupid Cancer (www.stupidcancer.org) was formed by a YA patient in 2007. Their website has forums where you can connect with other patients on a variety of topics. They also have a Facebook page and a podcast so you can connect that way as well. StupidCancer also holds a yearly summit to allow patients/survivors to meet and interact and the regional divisions hold smaller meet ups across the country. They also advertise seminars and conferences specifically for YAs with cancer, so it’s a great resource.

Many non-profits/societies for specific types of cancer have support groups and fortunately for me, the Leukemia and Lymphoma Society holds an online chat each week specifically for YAs who currently are undergoing treatment for blood cancers and survivors. I’ve been joining in on that group for a few weeks now, and it’s been helpful to discuss side effects, how everyone deals with different obstacles, and just to feel connected to other patients. This blog has helped me to connect to other patients, too, both through comment sections on other blogs or via email. It certainly helps to connect to other patients in any way that you can.

Medically speaking, there are a number of issues YAs face that might be shared with pediatric patients but not older adult patients in adult clinics. Because the majority of patients in adult clinics are not YAs, the oncologists in those clinics may not be as comfortable with discussing some of these issues as they’re often focused on the effects of cancer and treatments on older patients. This is ultimately why Ms. Frame chose to switch to a pediatric clinic as YAs and pediatric patients alike deal with the reality that having cancer and being blasted with chemo and radiation at a young age can have significant side effects on your health for the rest of your, hopefully, lengthy life. Older patients may have secondary illnesses further down the line, but the fact remains that they likely don’t have to live a majority of their lives with the issues I’ll mention below.

When my oncology team got to the point where they were discussing the side effects of chemotherapy with me in the hospital, my thoughts quickly went to what effects chemotherapy would have on my fertility. As a married woman in my early 30s with no children (although Jeff and I do want to have them), you can’t help but immediately worry that chemotherapy could prevent you from having biological children of your own. (Chemo wreaks havoc on the female reproductive system – it can cause temporary or permanent infertility and early menopause, and radiation can permanently damage the ovaries and/or eggs, if you are radiated in the abdominal region.) In a matter of just a few days, I went from leading a normal life and planning on having kids down the line to being suddenly faced with the prospect that I might not ever be able to have children of my own with Jeff.

A quick, but important, side note here. I really like my hematology oncologist for a variety of reasons – most importantly that he is an excellent physician – but I think one of the reasons I feel so comfortable with him is that he is in his late 30s, only a few years older than me. I have been able to talk with him about all of the potential issues I’m facing specifically as a YA cancer patient, because I know they’re issues he can identify with, even if most of his other patients are much older than me. This is a large part of the reason why I feel so well cared for in the adult clinic.

When I brought up my concerns regarding fertility, my hematology oncologist immediately validated my feelings and concerns. He informed me that about 90% of women my age who undergo R-CHOP keep their fertility and have children after treatment. It might be harder than it would have been, but it is possible. He did say though that there was a possibility that I could lose my fertility due to treatment, so he brought in a reproductive endocrinologist for me to speak with about our options in terms of preserving my fertility and I met with her before I began my treatments. The urgency with which he handled this and the validation he gave my concerns was really important to me. I’ve heard many stories from other YAs who say that their oncologists didn’t feel that the preservation of fertility was as important as starting treatment right away, and I’ve heard of patients who really had to lobby to get more detailed information about their options before beginning treatment. My oncologist recognized that I have a life outside of cancer that could be changed dramatically and permanently if he didn’t do what he could to help me make the best decision, and I am so grateful for that.

(Just for those who are curious…the repro. endocrinologist informed me that our best option for preserving fertility was to freeze our embryos as if we were undergoing the in vitro fertilization process. Apparently, storing embryos, as opposed to solely eggs, is more effective in the long term. There are some downsides to this process, though. The most important of which at that point was that I would have to hold off on starting chemo treatments for about three weeks and would have to inject myself with hormones everyday to stimulate egg production. I would feel even worse than I already did and I would risk the mass spreading or growing in the meantime. Although I’m insured through an employer in Massachusetts where infertility treatments are completely covered by insurance, I was a patient in Rhode Island where it is not covered. Thus, the process would cost a minimum of $7,000. But, I was informed that “storage” of the embryos was “fairly cheap” at $300/year. They would have been stored at a facility in Manhattan. It’s an odd thought – I would be carrying out my life in Rhode Island and our embryos would just be chillin’ (literally) at a facility in NYC. Ultimately, Jeff and I felt strongly that our chance to have children on our own was still good and I really didn’t want to have to wait to begin treatment so we decided against this whole process. Plus, we didn’t want to go into debt on top of everything else that was going on to save some embryos that we might not need.)

I’m hoping to get at least another 50 years out of this body, so I have to think about other effects that chemotherapy and radiation may have on me years down the line. For one thing, I will have to live a good portion of my life getting lab work and scans and checking in with both of my oncologists. That doesn’t sound taxing but the wait in between, constantly worrying if something new will show up or if your old cancer will come back, can be excruciating. Because I will have a longer period of time ahead of me than most other adult patients, I have a greater (although still relatively low) likelihood of developing a secondary cancer from radiation, like breast or lung cancer. I will also have a greater likelihood of developing heart disease earlier in life and may need to have arteries or valves replaced in my heart due to the side effects of R-CHOP. Many of these issues are those that are known to develop 20-30 years down the line, well after many older cancer patients would expect to live. Again, it helps in my case that I have an oncologist who talked through these possibilities with me before I began both my chemo and radiation treatments. Not every YA patient has this opportunity to know what they’re getting into.

While I’m sure that the cosmetic issues faced by cancer patients is tough regardless of age, I think they are tougher on pediatric and, particularly, YA patients. Imagine being a 21 year old young woman without hair, eyebrows, eyelashes, or nails. Imagine that your skin is yellowed and dry and you’ve either lost or gained a tremendous amount of weight from your treatments. It can be demoralizing and debilitating. It’s a time in your life where you try to look your best to attract a significant other and you feel as if you’re supposed to be in your physical prime and yet, you don’t even recognize yourself in the mirror anymore. Having an oncologist who sympathizes with this and can help you plan for hair loss or answer your seemingly superficial questions (like, “When can I dye my hair again?”) is a very good thing, but I fear that not all oncologists in adult clinics are receptive to these types of conversations as they view treatment as the only thing that is important.

There are effects on YAs beyond the medical issues that may not be as prominent for cancer patients of other age groups. As we’ve learned through all of the discussions about “Obamacare”, YAs are more likely not to have adequate insurance as this is a time in life when you may think you don’t need to worry about having a job with good benefits or that it’s more important to get a job/internship doing something you love, even if it doesn’t offer health insurance. On top of that, YAs tend to think that nothing “bad” will happen to them in terms of their health so purchasing private insurance isn’t a perceived necessary expense. Let me tell you, my cancer care, which isn’t all that complex compared to what other patients go through, has been billed to my insurance to tune of easily $500,000 and climbing every day. A colleague of mine had a complex case of leukemia and her care cost over $2 million. Imagine having to cover this out of pocket as a 22 year old intern at a magazine. The fact is, you couldn’t cover. Cancer can financially ruin YA patients if they aren’t prepared with good insurance coverage. Even if they have insurance, it might not cover everything and the co-pays and deductibles alone can be overwhelming. While pediatric patients are often covered by their parent’s insurance or can be covered by state/federal aid programs and older adults are likely to be more established in their careers and have benefits coverage or may be eligible for Medicaid/Medicare, many YAs may not be prepared for this type of disease to hit them and are caught financially off guard.

Further, YAs may be in college or working their first full time job when they’re diagnosed. Managing college classes and living amongst several thousand other people in a dorm aren’t exactly the best conditions for a cancer patient so many YAs are forced to take a leave of absence from school for an undetermined amount of time. They’re then disconnected from their social networks and can feel even more isolated. YAs who are lucky enough to have a full time job are usually at the start of the careers and their position at a particular company might be more tenuous than that of an older adult patient. Job security is a clear issue for YAs with cancer and it can be difficult to find your way back into the workforce again after you go into remission.

Finally, there are many social issues that YAs with cancer must deal with. As I’ve mentioned before, telling my parents and my husband that I had cancer was the hardest thing that I’ve had to do. No adult child should have to have that conversation with their parents – it’s absolutely gut wrenching. I am lucky in that my husband and I have been together for 14 years or so, so bumps in the road like this are manageable for us. However, I could imagine where a YA with cancer who has a “younger” relationship might struggle and it would be even more difficult to find a significant other during or after treatment as your self esteem can really bottom out between the hair loss, surgery scars, and weight gain/loss that can come with treatment.

This isn’t to say that pediatric or older adult patients don’t go through some or all of these issues, but I think the YA population is really dealt a tough and complex hand when they receive a cancer diagnosis. I have been SO lucky to keep a constant salary and benefits, to know that my job will be there for me when I’m ready to come back, to keep steady relationships with family and friends, and to have medical teams that understand what I’m going through. Unfortunately, not every YA is so lucky. In the future, I’d love to see more support for this group and I’ll continue to do what I can to get the word out!

An Update…

There really has not been much to report since my last radiation treatment until I had a great visit with my hematology oncologist yesterday. I’ve decided that he is essentially the best oncologist I could have ended up with for this whole process for a variety of reasons, and being assigned to him as a patient was really a function of random luck – he was the on call oncologist over the weekend when my biopsy results started coming back when I was in the hospital back in November. When I briefly expressed my thanks yesterday for all he’s done so far, he was quick to remind me that we’re not out of the woods yet and I can thank him when I get a clean scan – spoken like a true doctor, hedging his bets.

We covered a lot of ground yesterday. My blood work (complete blood cell count, white and red blood cell counts, neutrophils and B cell counts, and LDH and uric acid levels) looked great overall. According to my blood, I’m back to “normal”, or at least where I was when I started this whole shindig. I’m hoping my blood spreads the message to the rest of my body soon because I’m still feeling fatigued and have some shoulder and swallowing pain from the radiation. For all intents and purposes, though, I’m not immuno-compromised anymore so feel free to sneeze on me the next time you see me. It won’t kill me anymore, although I might get a cold, which would stink.

I then asked him a question I had never really thought to ask before – why did my mass not spread elsewhere? I’ve been reading an excellent book by Siddhartha Mukherjee called the The Emperor of All Maladies: A Biography of Cancer. It was a Pulitzer Prize winner in 2010. If you have any interest in cancer whatsoever, it is a fascinating read. Dr. Mukherjee writes about all of the discoveries made since the 1500’s or so about cancer – what it is as a disease, how to treat it using surgery, chemotherapy, hormone therapy and/or radiation therapy, the role of viruses in cancer, and how different forms are vastly different from one another among many other things. It’s brought up so many questions for me but this was the one that really stuck out, especially since I’ve connected with other diffuse large B cell patients who had much smaller masses than me but they spread to other sites quickly.

As a reminder, I was diagnosed with diffuse large B cell non-Hodgkin’s lymphoma with a primary site in the mediastinum (area between the rib cage and the lungs). My mediastinal mass was 13cm or so in length and it started in the lymphatic system, which is essentially a network of spherical nodes connected by ducts that runs throughout the entire body. The nodes are all interconnected, so it is unbelievable that none of the cancer cells hanging out in my chest migrated via the duct system and starting going into overdrive in other parts of my body. There are several places not far from the mediastinum where the nodes are more concentrated so I began to wonder if my armpits were somehow inhospitable for cancer? Is the area above and below my clavicle unwelcoming? Does lymphoma not like my neck? What’s the deal here?

Don’t get me wrong – I’m not complaining. One gigantic mass was more than enough for me, thank you very much, but as a biologist, I can’t help but think about these things. Who better to ask than my doctor about that, right? (The poor guy gets put through the ringer whenever I have an appointment, that’s for sure. He said he would be concerned if I didn’t have my little notebook out filled with questions for each appointment.)

I asked him this question – why did the cancer cells stay put? His short answer was, “Jocelyne, if I knew the answer to that question, I’d be a millionaire” but he explained that it likely had spread to micro-sites – in other words, cancerous cells likely inhabited other areas of my body but they were perhaps in small enough aggregates that they couldn’t be picked up on a CT scan. Fortunately, we caught it all early enough that those micro-sites hadn’t grown enough yet to be detectable.

This led into a bigger discussion of my diagnosis and treatment plan. He explained that the stages of diffuse large B cell NHL generally aren’t as crucial in terms of successful treatment and cure than it is for other forms and that varying amounts of R-CHOP rounds are very effective for all stages. This is in comparison to a disease like breast cancer where stage 2 is curable while stage 4 is often terminal. For reference, in the case of lymphoma, stage 1 patients have a single localized mass either above or below the diaphragm (the muscle that divides the chest cavity and the abdominal cavity). Stage 2 patients have more than 1 mass but they’re gathered above or below the diaphragm. Stage 3 patients present localized masses above and below the diaphragm but they’re not widespread, and stage 4 patients have widespread masses above and below the diaphragm. There are also a and b levels of each stage that denote severity/size.

I was technically a stage 1B patient – my mass was large but localized to one area. However, he explained that there is a push to classify diffuse large B cell NHL with a primary site in the mediastinum as its own form of non-Hodgkin’s lymphoma because it behaves differently than diffuse large B cell that presents in other areas of the body. He said that a notable majority of the patients who develop mediastinal large B cell are women in their 20s-30s. It requires more rounds of chemotherapy to knock down relative to patients who have similar sized diffuse large B cell masses in other areas of the body and a greater percentage of mediastinal patients require radiation after chemotherapy. In fact, mediastinal large B cell is being referred to more as its own form in Europe but the American cancer community isn’t quite there yet. If it was considered its own form, he would suspect that I would be perhaps at a stage 3 or so.

After this whole explanation, he just looked at me and said, “I didn’t really answer your question, though. The truth is, we don’t know why a mass of your type stays localized but grows to such a formidable size.” I’m totally okay with that answer. In fact, I expected it but curiosity urged me to go ahead and ask anyway.

After my last radiation treatment, I met with one of the center’s registered dieticians and we discussed a number of topics, including the importance of eating organic produce and all natural meats. This is a topic that probably deserves its own post and maybe I’ll get there somewhere down the line. Ultimately, the dietician felt that eating a produce based diet (not completely vegetarian but skewing more towards vegetables and fruits with lean protein) is the important thing to focus on in a “cancer survivor’s diet” (her words, not mine…I mean, isn’t this the diet we should all be following anyway?). However, if you can afford to purchase some or all organic, it certainly can’t hurt. The jury is still out on how much it will help to prevent future bouts with cancer. If you have to make choices for budgetary reasons (because let’s face it, paying $5/lb for organic apples is bonkers), splurging on organic thin  skinned fruits and veggies is the way to go as they tend to soak up more pesticides.

I asked my oncologist about this and he generally agreed, although he thought the splurge would be better served to go towards all natural/hormone free chicken. In the same breath, he said there’s no real data to show that eating all natural and organic would make a significant different in recurrence rates and he didn’t count out the possibility that we’ll find out 10 years from now that eating “organic” was just a load of bunk, as he put it. For now, I’m going to wash all of my produce thoroughly and buy the most natural chicken that I can and hope for the best.

My oncologist also reminded me that we don’t know what caused my case of cancer. Likely, it was a combination of environmental factors plus a roll of the genetic dice and some random chance thrown in for good measure. You can drive yourself crazy avoiding ALL of the things that could, maybe, possibly, cause cancer. Considering that keeping stress levels low is important as well, he recommended that I just do my best to avoid obvious sources (smoking, smokers, tanning beds, sun exposure without sunblock, tons of red meat, excessive alcohol…you know, the fun stuff) and try to eat as healthfully as possible.

From there, we moved onto scheduling my restaging PET/CT scan…this one’s the biggie as it will tell us whether I have any remaining active cancer cells. I finished up radiation on June 13th, and my radiation oncologist had suggested that we wait 2-3 months (!!!) before a restaging scan. Radiation causes inflammation of the tissues in the area receiving radiation and those areas can cause a false positive on the scan if you don’t leave enough time for them to go down. Thankfully, my hematology oncologist felt that was a bit too long of a wait and his previous experience suggests that four weeks is enough time to avoid a false positive. He said, “Why wait that long if we can figure out what’s going on in there much sooner?” I like the way he thinks! So he scheduled the scan for July 15th and I’ll meet with him on July 18th to get the results.

Those three days will be pure agony, but it will be worth the wait if the scan comes back clean. I don’t know exactly what emotions will fill me that day if it does come back clean. I was so excited to finish up radiation as you can see from the pure bliss experienced while eating my celebratory ice cream cone:

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Jeff and I have been together for almost 14 years now, and he said that moment was the happiest he has ever seen me in our entire relationship. This included college and grad school graduations and our wedding day, and quite frankly, he is right, although our wedding day is a very close second, so I don’t even know what I will feel if my oncologist tells me that I’m cancer free on July 18th.

I do know that I will celebrate, and with much more than an ice cream cone!!

Catching up…it’s been a busy week!

I have a few topics that I’m planning to write about in a bit more in depth but in the meantime, I’d like to catch everyone up on what has been going on with my treatments and with me. Beware, for this post is a hodge podge of sorts…

I’m now on radiation treatment 15 of 22. My scheduled treatments will be completely done on June 13th! I got a nice surprise today when I overheard my radiation therapist giving my daily appointment at 11:15am to another patient beginning on the 14th. While I felt horribly for this new patient as she looked quite overwhelmed by the process (I’ve been there, that’s for sure), it was amazing to hear that my radiation time won’t be mine anymore!

I’ve been seeing my radiation oncologist each week and I’m sure I will see him at least 1-2 more times after I complete my treatment, just to follow up on side effects. Speaking of, I’m not feeling too much in terms of side effects other than fatigue and some difficulty swallowing along with occasional shortness of breath. These side effects are all normal for radiation in the chest area so everything is going along as expected so far. My skin is holding up fairly well and I’ve been really diligent about using Eucerin (as suggested by my radiation oncology nurse) after each treatment. I’m sure this has helped, although it’s likely just a matter of time before it begins to burn. Radiation is really more of a mental grind than a physical one, but I’m having an easier time with it now that I’m more than halfway done with the process.

In other news, I was given the go ahead to dye my hair by the hematology oncologist. This sounds awfully vain but my hair (what little I have) was coming in white and grayish-brown. Given that we just went through what a meteorologist calls a heat wave (and I call a period when I go outside and feel like I’m swimming in soup), I knew I wasn’t long for wearing a hat, else I die of heat stroke (wouldn’t that be a kicker?). At the same time, I wasn’t ready to go without a hat in public with my hair looking like it did so when I got the go ahead to dye it, I immediately went to the store to pick up a box of semi-permanent color.

I did do some online research to see what other women experienced when they dyed their hair for the first time post-chemotherapy. Chemo affects all fast growing cells and even if your hair is growing back, as mine is, it could still contain some of the medication in the hair follicle and this can react with hair dye. Some women posted on various message boards that their hair ended up a horrid shade of orange when they dyed it at home for the first time. This scared me a little bit because I have been known to turn my hair orange with home hair dye (accidentally) before chemotherapy (shivers go down my spine as I’m reminded of the home highlight job of 2003 that made me look like I was wearing a brown and orange zebra pelt on my head). Other women reported that some of their hair fell out again after they dyed their hair. I’ve been growing this hair for the past three months. I don’t have a ton and I would have been devastated if it all fell out after I dyed it.

I asked my oncologist if I should use or avoid any particular products and he said any kind should be fine. I opted for Clairol Natural Instincts in a medium brown as this is close to my natural color and it’s a semi-permanent dye. It washes out in 28 shampoos and is ammonia free. With a good deal of trepidation, I locked myself in the bathroom to do the deed and to my surprise, it came out perfectly and none of my hair fell out. I am finding that it’s fading a little faster than normal but otherwise, it looks good if I do say so myself.

I’m sure many of you are wondering why I didn’t go to a salon to get it professionally colored. To that I say that I have about 2″ of hair – I’m not going to pay upwards of $50-60 to get that little amount of hair dyed by a professional. I made the pact with myself that if I was going to do this on my own, I had to be prepared for the possibility that it could end up a disaster and I might have to shave my head to start from scratch. I was willing to take the risk and it turned out really nicely.

Since my color looked good, I decided to go without any kind of head covering last Friday for the first time since December and it felt pretty good. It’s still a little short for comfort but I love how low maintenance short hair is and I might just keep it for awhile once it grows in a little more.

One other note regarding makeup that has helped me mask some side effects – Since I started chemotherapy, I’ve developed some pretty serious dark circles under my eyes and they can be really tricky to cover up. I’ve found that Physicians Formula concealers work really well to cover up these under eye circles as does the ELF brand concealers found at Target on the cheap. It’s the little things that make me happy these days.

Jeff and I had a really busy weekend as we attended a good friend’s wedding in NJ on Saturday. We knew the bride in college and many of our very good friends from college were in attendance. It was amazing to see just about everyone, especially those I haven’t seen since my diagnosis. Of course, everyone asked how I was feeling but once we had that initial exchange, that was all we spoke of cancer for the whole weekend. For the first time in awhile, I felt somewhat normal and my friends allowed me to have a good time and not focus on the fact that I’m still sick. It was a wonderful break and I’m so grateful to them for making me laugh and letting me focus on something else for a few hours.

Throughout this process, I’ve found that writing my blog has led to me reading the blogs of others, either fellow cancer patients or those who maybe are going through a major change in their lives. I’ve recently taken to reading two blogs that I’ve been finding really helpful and I thought I’d share some info about them.

My friend from high school, Vanessa, has recently taken a huge step in her life and has decided to leave her job in the big city to embark on a journey of self-discovery through healthful eating and exercise. She is writing a really great blog called, “Thick and Thiin” (http://thickandthiin.blogspot.com) about her workouts, diet and everything in between. It’s a great read if you’re looking to get back on the exercise and healthy diet horse after months of chemo and radiation or even if you’re already fit and are looking to spice things up.

I’m always on the lookout for blogs written by other cancer patients who seem to have a similar outlook as me, and I’ve definitely found it in Jenn’s Cancer Blog (http://jennscancerblog.wordpress.com/). Jenn has a form of breast cancer, IDC triple negative, and was diagnosed a few months before me. Her path has been different than mine in many regards but I think her outlook is quite similar and it’s a great read for any cancer patient, but especially for newly diagnosed patients. She describes her journey in detail that is easy to understand and her radiation posts have been really helpful to me recently. We have to stand together on the cancer front and Jenn’s blog has been a big help.

In any event, that’s all for now. More radiation this week and next for me and then I’m done! I’ll be sure to write about any super powers that I pick up along the way.

Marathon Day of Cancer Care

I am definitely feeling fatigue from radiation (more on that below) so on paper, my schedule for this past Wednesday was daunting. It really ended up being a cancer care marathon. It was akin to my time spent in the hospital seeing umpteen doctors a day, but instead of lounging in a hospital bed in my PJs watching daytime TV while everyone came to me or I was wheeled by orderlies to wherever I needed to go, I had to hoof it around the cancer center myself to go to a radiation treatment, appointments with oncologists and to get blood work and my port flushed. The whole day made me think that it would be awesome if oncologists and radiation therapists made house calls.

(An aside…I don’t want to end up in the hospital again, but the lazy side of me really enjoyed being wheeled from one place to another in bed while in my PJs. I would love it if Jeff would wheel me from one place to another in a bed but I don’t think I could convince him to do it.)

(Another aside…I put a lot of thought into what I’m going to wear on these treatment and appointment days. I need to wear clothes that are easy on and off for radiation that also allow my doctors and nurses easy access to my port and surrounding skin for exams. I’m definitely of the mindset that if I look as good as I can muster, I’ll feel good (or better) so I try to wear an outfit that gives me some confidence or a mental boost. I ended up going with a black and white chevron maxi print dress and red shoes with my Red Sox hat. I even went so far as to paint my nails a springy mint green and I got a ton of compliments from all of my nurses on that. I made sure to wear makeup, too. This seems like a lot of effort for going to the doctor’s office, especially given how tired I am, but I think it does help my mental state. Otherwise, I’d shuffle around the center looking like a zombie. I might feel like that on the inside but I don’t need to project that on the outside.)

11:00am – I arrived at the radiation oncology unit for my treatment. I changed into my lovely double hospital gown ensemble (one with the opening in the back and the other with the opening in the front). This keeps me from flashing my back to everyone and makes me feel more covered up while going bra-less – something I cannot (and should not) ever do without more than adequate coverage.

I have learned to bring my iPhone and ear buds with me to the waiting room. This lets me drown out Fox News and avoid other patients if I would like. One big difference between the infusion center and the radiation department, as I’ve mentioned, is that you come into contact with other patients with more frequency in radiation. This can be a blessing or a curse. On this particular day, I ended up having a really nice conversation with an older woman who was there to receive treatments for the second time. We talked about how it was going for me so far and what she experienced the last time around. She was super upbeat, telling me that going through this again was much easier the second time around. On the other hand, I’ve also come into contact with older patients who hate that they’re getting treatment, hate the nurses, hate the doctors, hate the wait, hate that it’s cold in the department, hate the snacks available in the waiting room (yes, there are snacks, coffee and water – consolation prizes for having cancer, I suppose) and obviously hate the world in general. Hate, hate, hate, hate, and more hate. I certainly can’t blame them for feeling this way, but the last thing I want is to be poisoned by someone’s negativity. It’s bad enough that I’m getting poisoned by drugs and gamma rays.

11:30pm – I was called into my treatment room for radiation. I got maneuvered, groped (respectfully), and nudged into a very exact position. One of my therapists said, “Here we go”, they all scurried out behind the 6 ft concrete wall and I lay there while the machine rotated around me emitting the rays. It’s gotten to the point now where I know the sounds of the machine and the program sequence so as soon as it’s done, I put my arms back in my gown, get up, and gather my things. I said goodbye to the therapists and headed to the changing room to slather Aquaphor over the areas of skin that get radiated to prevent radiation burn as much as possible.

The radiation changing room stalls include full length mirrors, which are really helpful when I’m trying to apply the Aquaphor to my skin, otherwise it would probably end up everywhere it shouldn’t. This also forces me to look at myself naked in the mirror every day from very odd angles while I try to get the ointment on my tattoo marks. This got me to thinking the other day that one very unexpected benefit of having cancer is the comfort I now have in my own skin. I have to change in front of this full length mirror every day, something I never would have done willingly before my treatments began. Plus, over the past six months, I’ve been forced to be topless in front of all of my medical teams at some point or another during exams, they’ve all felt my armpits and groin for other possible enlarged lymph nodes, I’ve had to talk with them about how my body is responding to treatment and I’ve had to learn to grow comfortable with being examined from every possible angle. After all of that, I really can’t help but feel like the human body is a machine and if you have one that’s working, it’s worth being proud of no matter what it looks like.

(That said, I will be zumba-ing to lose weight as soon as I can breathe normally again. I said I was comfortable in my own skin – that doesn’t mean I’m completely 100% happy with what that looks like. I definitely won’t beat myself up as much from now on, though.)

11:45am – Onto my appointment with my radiation nurse and radiation oncologists. At this point, the only real symptom I’m experiencing due to radiation is fatigue. This fatigue is very different from chemo fatigue, which didn’t make me feel sleepy but made me feel like every part of my body had a 50 lb. weight attached and doing even simple tasks took a tremendous amount of effort. Radiation fatigue just makes me feel very sleepy all the time, no matter how many naps I take or how much sleep I get each night. While I was feeling much better in those weeks between chemo and starting radiation, I’m now back to where I was at the end of chemo – feeling exhausted and wiped out. There’s also the mental exhaustion from having to go in there every. single. day.

My radiology nurse and oncologists were surprised by the fatigue I’m feeling as they all claimed that most patients say that the chemo fatigue is worse than radiation fatigue as if it’s some kind of sick competition. There’s really nothing that can be done to ameliorate this fatigue, although I think the doctor who can figure out how to deal with treatment fatigue for cancer will win many awards. Don’t worry – I support making any doctor who “cures” cancer a saint or a knight or something.

Other than discussing my fatigue, my radiation oncologists just wanted to know if I’m feeling any other side effects from radiation, which I am not. Once I said no, they wrapped things up and moved onto the next room. I like them both, but I must say that they’re kind of the specialists of all specialists – they’re really only concerned with this relatively small area in my body and the skin above it and that’s about it.

12:15pm – I got a break until I needed to get blood work drawn at 12:40pm so I headed up to the Au Bon Pain to grab a bottle of water and a snack. Being in there at lunchtime made me realize that the hospital in which the cancer center is located is a hotspot for young, attractive doctors. I swear it’s a vortex – sucking in any and all attractive medical professionals in a 20 mile radius.

12:40pm – Off to the phlebotomist for a blood draw. My hematology oncologist ordered what he calls a “hem (pronounced heem) screen” for blood cell counts (red and white), neutrophil counts, lactose dehydrogenase levels and uric acid levels among other things. This allows him to keep track of markers for tumor growth without having to CT scan me all the time. Fortunately, the phlebotomists in the cancer center are amazing and can usually hit a vein on the first try. Heaven help you they have trouble – this has to be one of the more painful experiences and results in a really nasty bruise.

1pm – Off to the CNA. She took my blood pressure and commented that it was a little high. Mind you, by this point in the day I climbed upstairs and downstairs and walked a relatively short distance for non-cancer patient me but that distance felt like I crossed the Sahara for the cancer patient me. I sweated all day long and was literally a hot mess, so I would expect that my heart would be pumping pretty hard. She should have been thankful that I didn’t pass out in her patient chair. High blood pressure, indeed.

1:20pm – The second to last leg of the tour – an appointment with my hematology oncologist. Usually, I’m one of many patients sandwiched into his schedule but somehow, I ended up being the only patient that day. This meant we could talk for awhile about my radiation program and treatments as well as how things are going overall.

I was honest and told him that getting radiation was a mental and emotional grind every day and that I am physically exhausted already. Honestly, I much prefer the chemotherapy process to radiation, sickness and all. This didn’t surprise him in the least. He totally understood how I felt and assured me that many of his patients feel the same way. He also recommended staying away from patients with negative attitudes as much as possible (hello, Pandora and Candy Crush on my iPhone!) to keep up my positive spirit. As far as the fatigue, he reminded me that while I made it through chemo with relatively few issues, it did put my body through the proverbial ringer and now we’re barraging it with radiation so it’s completely normal to feel this exhausted.

We talked about some side effects I’m still feeling from chemo – mainly peripheral neuropathy and “chemo brain”. I’m having more trouble with word recall and short term memory lately. It’s a really indescribable feeling as words that are very common for me to use will randomly escape me or I can’t remember how to do something very basic. Yeah, I know we all have memory problems, especially as we age but this is a complete inability to recall information as if it never existed in your brain in the first place. It’s scary but he assured me that it, and the neuropathy, will most likely go away with time.

I also asked about the plans for the future and it looks like we will do another PET scan in late July or early August. We can’t do it too soon after I finish up radiation or else I might get a false positive result. He is very confident that the radiation will eradicate the remaining cells but if anything remains after this scan, we might wait another few months for another scan to see what happens as it could be a false positive or the cells might die off with the remnant effects of radiation. If the area is still relatively large, we have other options for secondary chemotherapy although he said they are “trickier” to deal with and he would like to avoid them if at all possible. Still, it’s good to know that there are options should it not go away this time around or it comes back after a period of time.

This led me to ask him if I could continue to plan on going back to school in the fall and he told me to plan on going back as planned but that there’s a 5% chance that something could come up on this scan. Even so, that doesn’t mean I wouldn’t be able to work or would even undergo more treatment at that point since we very well might take the wait and see approach.

I also asked a question that’s been on my mind for weeks – when can I dye my hair again? My hair is growing in slowly but steadily and feels strong but it’s coming in as a dull brownish gray as a base with gray highlights, if there is such a thing. I’m so close to going without a hat in terms of length but the color is throwing me off. Good news though – I can dye my hair whenever I’d like! No restrictions and I can use whatever products I’d like to use! This might seem really vain and relatively minor but it’s a big victory for a young adult female patient, believe me.

Ultimately, I felt really good leaving this appointment – emotionally anyway. Physically, I was beat. As always, my doctor took the time to answer all of my questions and reminded me that this process is horrible no matter which way you cut it or how well you tolerate it. He reminded me that it’s okay to feel like I’ve been to hell and back, because I have in a lot of ways. It’s just nice to have your doctor validate these feelings for you.

I scheduled my next appointment with him for next month, at which point I will be done with radiation!

2pm – I was sent up to the infusion center to get my port flushed. The nurse called me into her pod and grabbed all of the necessary equipment. When she looked at my chart though, she realized that I was actually two weeks early for a flush so she spared me another poke with a huge needle and scheduled me for a flush in early June after one of my radiation treatments. At that point in the day, I was happy to get a break and headed back down to my car for the ride home.

All told, it was a crazy long, but good day. I have a renewed sense of determination regarding what’s going on and where I’m headed with my treatment. The end of my treatment is in sight, my friends, and all is well for now.

No one said it would be easy…continuing side effects and radiation prep

As much as I try to remain positive and not get annoyed with having cancer, there are days when it’s really difficult to keep up the positive attitude. The past few days have been particularly trying. The numbness in some of my fingers has become more persistent. I can’t feel the tip of my middle finger on my left hand (this wouldn’t be so bad if I weren’t left handed) and that numbness is progressing down towards my palm. When I wake up each morning, both of my hands are tingly and take awhile to “wake up”. If I clench my hands to write or grip the steering wheel of my car with either hand, I get a sharp, nerve-based pain in my palm and a tingling sensation radiates out to my thumb, index and middle fingers. I also can’t bend my arms for any period of time (for example, as needed to talk on the phone) or my fingers fall asleep. Now, I either walk around like a mummy with my arms totally straight or deal with numb fingers. I’m constantly doing jazz hands to wake my fingers up, which totally makes me look like a deranged hairless dancer without a stage to dance on.

More concerning is that my fatigue has intensified over the past few days. I’ve been taking 2+ hour naps after breakfast. I need at least one large coffee to stay awake during the day, not to just boost my energy. Last week was busy while I was home visiting family, but not so much that I thought I’d be out of commission for this long. I’m also still gasping for air if I walk any more than 20 feet. I know my stamina will improve over the next few months but I’m getting impatient.

Some of my frustration stems from the fact that I’m not actively undergoing any treatment right now and yet I know I still have active cells hanging around in my chest cavity. That’s not to say that nothing is happening – preparations are being made by my physicians for my radiation treatments as I’ll describe below, but I feel like I’m not doing anything productive to get better which is driving me bonkers.

So about that radiation situation…

About two weeks ago, I met my radiation oncologist and his resident. I liked both but it’s completely evident that the resident is terrified of my radiation oncologist. I met with the resident first and he was cool, calm and collected. Then, I met with the oncologist and resident together wherein the resident looked like he was going to have a nervous breakdown. Essentially, the message was the same, breakdown or not. I will likely need 15 sessions of radiation. I’ll go each weekday for a session that will last 15 minutes door to door. The actual radiation process is equivalent to getting an X-ray in terms of the time (less than a minute total) but the beams will be stronger in intensity.

How does radiation therapy work and how is it different from chemo?

The National Cancer Institute has a great website that clearly describes radiation therapy, but essentially it works by using high energy beams (X-rays or gamma rays) to damage the DNA of cancer cells. The idea behind this is that if a cell has damaged DNA, it will not divide thus causing the cancer from proliferating or spreading elsewhere. Radiation tends to be quite localized to a specific active site to avoid damaging cells outside of the active site whereas chemotherapy is systemic, injected into the bloodstream.

After the appointment with my radiation oncologist, I had a simulation scan. The nurses and radiation therapists placed me in a CT scan to obtain another clear view of the mass and to mark the locations on my body where the beams will hit during each treatment. To ensure that those beams hit the internal active sites and as little of the surrounding tissue as possible each time, I was marked with permanent tattoos under each arm and on my sternum. They look like tiny dots made with a blue pen. I asked the nurse if she could get creative and give me some roses or something – no such luck. Boring blue dots for me! It is imperative that you hold the same position and have the beams hit you in exactly the same spot for each treatment, hence the tattoos. They made a pillow mold of my head and back to use during each treatment as well.

My radiation oncologist, physicists and dosimetrists are currently determining the dosage and specific method they’re going to use to administer the radiation using the CT scan taken during the simulation and my PET/CT scan from a few weeks ago as guides. The physicists will design a specific program for me that will include the angles of the beams and the angle of my body on the board under the machine to ensure that they hit as little of the surrounding tissue and as much of the active mass as possible. I’m supposed to hear from my radiation oncologist this week so he can let me know how successful the program will be. I will undergo a practice run on Friday and if that goes well, I’ll start radiation treatments on Monday.

The treatment will be localized to the active site of cells so the side effects should be minimal, although that’s a relative term for a cancer patient. The most common side effects are skin irritation/burning at the application site, sore throat/acid reflux since the mass is close to the esophagus, and fatigue…surprise, surprise.

Jeff and I, of course, wanted to know if I would become some radioactive superhero, like Phoenix, Invisible Woman, or Spiderwoman. I could live with those side effects, but we’re not going to hold our breath.

There are some other serious side effects that are less common. Since the mass is close to my lungs, there’s a small chance of pneumonitis, which was explained to me as an inflammation of the lungs that causes a feeling of pneumonia. The bigger concern is the secondary development of sarcoma of the lungs or breast cancer. Neither would likely appear in the short term but could develop in the future. Of course, if either does develop it will be next to impossible to determine whether it was the radiation treatment for NHL that caused it.

Of course, I have to take this information into account when proceeding with radiation but really, the likelihood of a secondary cancer 30 years from now can’t scare me off from being cured today. If I don’t get radiation treatment, the other options would be to wait and see if there’s a further decrease of the mass in three months or discuss the possibility of other forms of chemo. Stronger combinations of chemotherapy medications can be used in the cases when patients with diffuse large B cell don’t respond to RCHOP, but my hematology oncologist has assured me that we don’t want to go down that road unless we absolutely have to. Since my last round of chemo was pretty tough, I’m going to plan on avoiding more chemo unless it’s really necessary.

Even if I do get a secondary cancer down the line, I have to put my faith in the advances research has brought forth in the past 60 years or so and know this will continue well into the future. I truly believe that we will have a much better handle on treatments, diagnoses, and the mechanisms that drive uncontrollable cell proliferation in the future. Radiation therapy wasn’t even thought of as a possible cancer treatment until the early 1900’s and wasn’t used viably until the 1940’s or 1950’s. Most of the studies that have focused on the secondary effects of radiation have used subjects who received radiation 20-30 years ago when it was not possible to localize the beams on such a specific area as they are able to do now. We won’t know for another few decades whether the procedures for radiation today cause secondary cancers at a significant rate. By then, I’m confident that treatments for most cancers will be even more effective than they are today. I’ll have to put my faith in that and go ahead with the radiation therapy so I can at least live the next 20-30 years cancer free.