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.

 

Advertisements

Life in Remission – Physical Aftershocks

Clearly, going back to work full time has seriously infringed on my blog writing, and that stinks if you ask me. If I’m not at work, I’m driving to/from work, catching up on work at home, cooking, cleaning, running errands, playing with our kittens (fun! fun! I have absolutely become a crazy cat woman) or sleeping. In fact, most of my free non-work (or doing-things-to-make-Jeff-and-Jocelyne-be-functioning-members-of-society) time has been spent sleeping or resting. I even had trouble staying up to watch the Red Sox in the World Series, and that should tell you something, especially if you know me in “real life”.

So, I have amassed a list of topics that I have been wanting to touch on for the last month or so. Forgive the haphazard nature of things, but I’m going to try to write about what’s been going on lately over a couple of posts. My physical health is still at the forefront of my thoughts on most days so it’s what I’ll address first.

I had my first 3 month post-remission checkup a few weeks ago with my hematology oncologist, and everything turned out great, as did my appointment with my radiation oncologist about a week ago or so. During the checkup with my hem/onc, I had blood work to check on complete blood cell counts and tumor markers, like lactose dehydrogenase (LDH), that were elevated while I was sick. My hem/onc feels confident in looking at these values and assessing whether I’m still in remission every other checkup, as opposed to doing CT scans every time, and I’m confident in his confidence. I will have a CT scan every six months, so I’m scheduled for my first post-remission CT scan in January. It is called a re-staging scan, but I’m sure I’m not alone in feeling like this is not optimistic terminology. Why can’t they call it a “remission confirmation” scan? In reality, scans only catch about 2% of recurrences of diffuse large B cell NHL, according to current research. This is largely because the masses characteristically grow so quickly that it is usually patient symptoms that tip off clinicians as to a recurrence or relapse as opposed to scans or even blood work so it really comes down to me checking in on my overall health and how I feel everyday that is the most important.

Even though I’d been feeling okay coming up to the most recent appointments, I’d be lying if I said that I wasn’t worried right before both of them for some reason. My original symptoms were extreme fatigue, pain behind the shoulder blades, profuse and unexplained sweating, heart palpitations, and trouble breathing, not just shortness of breath. They were all well beyond the norm and completely abnormal. However, right before this follow up with my hem/onc, I was seriously concerned every morning that I woke up overly tired (welcome to the life of a cancer patient – you almost always wake up tired or get tired at some point in the day, even in remission) or I sweated a lot/was short of breath after climbing up a flight of stairs. Never mind that my aerobic capacity is next to nothing because I’ve been laid up for a year, and let’s be honest, I’ve never been the picture of physical fitness to begin with. (The President’s Physical Fitness Test that we had to take in elementary school gym every year still gives me nightmares – sit-ups were the bane of my existence.) Yet, with every labored breath and every drop of sweat, I couldn’t help but think (and still do think, even after the appointment) that It had come back. I have to constantly remind myself that these day to day reactions aren’t severe – they’re normal.

My hematology oncologist put my mind at ease, as he always does. It wasn’t surprising to him that I was anxious and still not feeling great. In fact, he said that he would have been surprised if he walked into the exam room and I told him that I was feeling fine. He reminded me that I’ve been through a lot over the past ten months and it’s going to take a lot of time to get back to “normal”. Since my blood work looked good, he is confident that I am still in remission and things are fine for now.

In truth, I don’t know if I’ll ever be able to let go of the “for now” part of that statement. I just feel like I’m waiting for the other shoe to drop whether it’s in the near future or years down the line. Somehow I can’t shake the feeling that my “battle” (I hate that term but can’t think of anything better) isn’t over yet. I’m hoping that feeling will go away once I’m out of the two year window when recurrence/relapse is most likely, but a lot of patients/survivors have told me that feeling never really goes away, so we shall see.

Being back at school and teaching full time is generally a good feeling. It is very tiring, though. There are still days when I feel like I got hit by a truck, and I’m experiencing a lot of bone and joint pain that my hem/onc delicately attributed to “de-conditioning” and side effects from chemo and radiation. There are some days where the pain in my hands, especially, is excruciating. I never thought myself to be one for a massage – frankly, the thought of a stranger touching me in any way creeps me out – but there has been more than one day lately that I’ve thought having a massage would be positively heavenly. The pain and fatigue is slowly ameliorating, though and I’m sure I’ll get better as time goes on. My hem/onc had a patient with diffuse large B cell who was a professional cyclist prior to diagnosis and it took him two years to get back to normal, so I think I’m doing well, relatively speaking.

In terms of other long term side effects…my periods seem to have finally gone back to normal. That’s too much info for some, I’m sure, but fertility problems are a reality for many female cancer patients. I still have digestive tract issues, including some that “flare up” and make everything very uncomfortable. I’ll leave what exactly is going on to your interpretation. Those sorts of issues will probably stick with me for the rest of my life, but at least I have a life to live, and Preparation H and I are forever entwined, I suppose. While I will say that having cancer has taught me many things, many of which were good, it has also taught me that when it comes to the physical effects, cancer is a disappointing gift that just keeps on giving.

I am positive that the physical side effects will wane, or at least become a part of my new normal, which I can handle. If being in remission means being a little bit more tired/winded and being occasionally reminded of nagging, but harmless, long term side effects, I’ll gladly take it over the alternative – that’s for sure.

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!

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.

The Waiting

My last treatment is done. It was the hardest of the six. My nose started to burn pretty badly during the cyclophosphamide and I felt really nauseous last night. My eyes and teeth were killing me and I couldn’t relax enough to get comfortable and had a hard time falling asleep. Jeff got me a cold compress for my head, which helped a whole lot and eventually I was able to get some rest. I woke up this morning feeling relatively well.

Now, we wait until April 22nd when I will get a PET scan that will show whether the cancerous cells are gone (hooray!) or if a small area of cancerous cells remain (boo!). The wait is because I need to let the prednisone work its way out of my system as it could yield a false negative on the scan. I’ll meet with my oncologist on the 24th to get the results of the scan.

My oncologist and I talked through the possible scenarios after the scan. If the cancer is being a stubborn mule and hangs on, then I will likely have 1-2 rounds of very localized radiation. If not, then I will be in remission. I will then see my oncologist every three months during which time I will have blood work for specific tumor markers and I will get CT and PET scans every six months for two years. After that, I will see him once every six months and will get scanned once per year for another three years. I will be officially cured if I remain cancer free throughout that entire period.

These time tables might seem arbitrary, but not surprisingly, my oncologist had a very reasoned explanation for it. Overall, the recurrence rates of diffuse large B cell lymphoma are about 10%. If it does recur, it will most likely happen within the first two years of remission, so he will keep a close eye on me during this period. Of course, since my cancer was so aggressive this time around, he wants me to come in as soon as I feel any familiar symptoms should they arise between visits. After two years, the likelihood of recurrence drops significantly and after 5 years, it drops to 0.01%. There aren’t any known connections to other types of cancer, unless I need radiation.

Overall, my oncologist is really happy with my results. He feels I’ve gotten through it with a positive attitude, which is helpful and I’ve had rarely few side effects. I think he might have even been more excited than I was that I was going in for my last treatment.

For now, I’m keeping my fingers crossed for good news on April 22nd.

Who loves ya, baby? (Or the story of how my hair fell out)

Chemotherapy comes with a lot of side effects but by far, the one that I get asked about the most is the one I live with every day: hair loss.

For many female cancer patients, hair loss is one of the more traumatic experiences one can have while undergoing chemotherapy, and it comes with lots of tears and heartache. While it might seem silly to agonize over hair that will eventually grow back, understand that this is often the only easily visible sign that you have cancer, and while other side effects come and go, you’re reminded of your hair loss every time you see your reflection. Many women feel like part of their femininity is yanked from them when they lose their hair, and let’s face it ladies, if you’ve ever had short hair you know how much of a pain in the neck it is to grow it out. Imagine having to grow it out from stubble – there’s no amount of barrettes or clips that will help you through that easily, so the tears could easily be for that process more than anything else. It will take a long time to have it look presentable again, so that reminder of cancer sticks with you for awhile after you are otherwise rid of the disease.

When you’re out in public, a bald head is also generally the only way that other people can identify you as a cancer patient, especially as a woman. I wear a hat or scarf when I go out now. I don’t think I’ll ever go out bare headed in public, but even with my hat or scarf, it’s still noticeable that I don’t have any hair. Just the other night, Jeff and I were sitting next to two women at a bar while having dinner and one said to the other, “I wonder if she has cancer?” while looking in my direction, and the other woman said she thought so. She should have just asked me – I would have been glad to share. Instead, I sat there like a hat-wearing side show. The point is that losing your hair makes it blatantly obvious to the world that you’re sick.

Talking about hair loss was one of the ways I figured out I have an oncologist who will always give me the straight answer to every question I ask and who knows this disease really well. While I was in the hospital, all of the oncology nurses said I “may or may not” lose my hair. I saw my oncologist at a follow up appointment one week after my first treatment (day 7 – still with all of my hair) and we went through the list of prescriptions I had to manage the chemo side effects. After we got to the end of the list, he said, “I know it can be really difficult for a woman to lose her hair due to chemo. I looked into it this morning and your insurance company will cover – and I know this is going sound weird – a hair prosthesis. Would you like me to write a script for you?”

The thought that the medical term for a wig was a “hair prosthesis” was hysterical to me, as if it was somehow more medically sound than just calling it a wig. A wig is a wig, not a replacement appendage. I said, “Well, the nurses in the oncology ward mentioned I may not lose my hair. Do you think I’ll definitely lose it?”

He said, “The nurses upstairs are great and try to calm patient’s nerves, but I’ll be honest with you. You will lose your hair, and it will probably begin to fall out next Tuesday night or Wednesday so if you would like a wig, I’ll need to write the script today so you can get it made in time. But remember, losing your hair is a good sign in the long run because chemo acts on fast growing cells, including your tumor and hair.”

There were no ifs, ands, or buts about it. I was going to lose my hair. I thought about it and decided that I didn’t want a wig. I was going to be on medical leave from work, so I didn’t have to worry about what my students would think and all the people I was going to be around for the next six months knew that I have cancer, so who was I fooling? I understand that many women prefer to have wigs instead of wearing hats or scarves, and I say go with what makes you feel your best. That said, they just don’t look real to me and from what I understand, they can be very uncomfortable. Plus, I figured if I wasn’t going to have hair, I might as well take advantage of being free from the shackles of hair care all together.

After my appointment, I began to wonder what it would be like to lose my hair. Would today be the day that it starts? Would it happen in the morning? The afternoon? Before I go to sleep? While I was sleeping? Would it fall out in the shower? Would a pony tail pull it out or prevent it from falling out? Some people recommended that I start to bring hats/scarves with me when I go out in case it begins to fall out while we were out somewhere! What?! It could all fall out spontaneously? Would I be out to dinner with Jeff and all of the sudden my hair would drop to the floor? That was a horrifying thought. I could walk into a place with a head full of hair and walk out like a Mexican hairless dog!

As it turns out, Diem Brown from the MTV Real World/Road Rules Challenges (one of the guilty pleasures in our house) was diagnosed with ovarian cancer for a second time and has been blogging about her experiences for PEOPLE magazine. She created YouTube videos that captured her hair loss throughout the entire process, which were really helpful for me to watch before my hair began to fall out.

Sure enough, just like my oncologist predicted, I noticed a much bigger than normal clump of hair in the drain cover after a shower on the Tuesday afternoon following my appointment. I thought maybe it was just my mind playing tricks on me, but I brushed it after I got out of the shower and sure enough there were huge clumps of hair in the brush, much more than my usual shedding.

More and more hair began to fall out over the next few days. I left clumps of hair in my wake every time ran my fingers through it, put on/took off a hat, put my hair up in a ponytail, pulled out my hair elastic, washed my hair, brushed my hair, and eventually just moved in any way. Of course it first fell out all along the part in my hair. Wouldn’t it be nice if it could at least fall out under the top layers so I didn’t have huge visible bald spots for a bit? I wasn’t so lucky. My scalp got a little sore, too, as if I left a tight ponytail in for too long. Eventually I got to the point where I knew I was going to look ridiculous if I was left with measly clumps of hair and a bunch of bald spots, so I made the decision to shave it.

I dropped Jeff off at work on Saturday morning. I figured that was as good a time as any, so I grabbed my hair trimmer and brush and headed into the bathroom. I began to brush my hair to pull out as much as I could. It really wasn’t painful – just shocking to see your hair matted up in the brush instead of on your head. I kept brushing until there wasn’t quite so much coming out with each stroke. I looked at myself in the mirror and had about a third of my hair left but it was sparse, with patches of long hair here and there. It got to the point where it had to be shaved off, so I turned on the trimmers and buzzed a section straight up the middle of my scalp.

Does this guy come to mind?

There’s no coming back from this style, quite frankly. Once you make the decision to shave it and you go right up the middle, you’re committed to being bald. Then,

became my internal soundtrack and remained an earworm for days afterward.

I kept going around my head in all directions, with every move of the trimmers causing huge clumps of hair to fall to the floor. Suddenly, I wondered what my head was actually going to look like under all this hair. I have a giant head as it is – I was just hoping I didn’t have any dents or weird birthmarks. Maybe I could pull off the cool punk girl vibe? Would I look absolutely ridiculous? I could only hope I would look as gorgeous as Natalie Portman sans hair.

nm_portman_ssv_

And not so much like this:

Bald Britney

(Poor, poor Britney.)

Ultimately, I fell somewhere in between when all was said and done. I had some dark peach fuzz all over my head, but there wasn’t much to speak of. (After the second treatment, even a lot of the peach fuzz fell out.) I threw on a knitted cap and went to pick up Jeff from work. When I got there, I whispered to him that, “I did it” but I was afraid to show him, even when we got back to the privacy of our own home. I kept hemming and hawing about taking off my hat, not really sure what I was afraid of.

Eventually, Jeff got tired of me being a lunatic and pulled the hat right off of my head. He took it in for a second, kissed my forehead (Awwww….sorry for showing you have a sweet side, Jeff), and said it wasn’t a big deal. My response:

“Who loves ya, baby?” in honor of the greatest bald headed person to ever grace the Earth with his presence.

Telly_Savalas_Kojak_1973

Then we ate out using a Diners Club card and Jeff threatened to throw my head in the Shine-O Ball-O.

shine o ball o

Honestly, I found the whole hair loss experience pretty funny. It’s kind of like your hair says, “Oh, you’re getting chemo? Well, that’s it…I’m out”. Then you’re left bald and cold. You really do lose a lot of heat through your head.

Since then, my left eyebrow has started to fall out while the right one is still hanging on. This is actually more traumatic since you can’t do much to cover this up in a natural way. I can either draw them in as best I can or go eyebrow-less, which I’m avoiding like the plague. One of my eyebrow hairs fell out this morning after I washed my face and I dove for it like I could reattach it. I’m just hoping I can make it through the last two treatments with the remnants of my eyebrows and eyelashes attached to my face.

It can be tough to feel attractive with no hair. Some mornings I wake up and feel like a naked mole rat, but I find that I don’t feel half bad if I wear colorful and stylish clothes (as opposed to sweats and PJs) and put on makeup, big, colorful bangle-y earrings and other accessories. It especially helps to get done up as best as I can on treatment days. I now subscribe to the theory that if you look good, you feel good.

There are some advantages to being hairless, though.

1) Pretty much all of the hair that you would normally pluck, shave, or wax falls out. This makes general upkeep a whole lot easier, and since I have no hair to wash or shave, my showers and “getting ready” rituals are a lot shorter. Jeff appreciates this more than me.

2) No shampoo, conditioner, mousse, or hairspray to buy.

3) Most important – no upkeep of hair color. I was going gray before my cancer diagnosis and have been coloring my hair for years. Being free of touching up roots or reapplying hair color at home is kind of nice. As an aside, you would think that the gray hairs would fall out along with my natural pigment hairs, but oh no…those little hairs are stubborn, stubbly and still mocking me every day. Even chemo can’t kill them off. In the meantime though, I don’t have to be a slave to the box of color.

Since I didn’t quite lose all of my hair, I have some short little hairs that are now growing back. I’ve decided to keep shaving them down until after my last treatment and all the bald patches begin to grow in. I’ve heard that hair can grow back a completely different color and/or texture after chemo, so I’m hoping for something good. Either way, it will just be nice to have my hair back again and all of this behind me.