How my life has changed…

Well, it looks like almost a year has gone by since I last posted. So much for not letting the blog fall by the wayside as I continue the march through remission.

Frankly and fortunately, there’s not a whole lot to report about my health in tangible terms. I am fortunate to still be in remission from primary mediastinal diffuse large B cell NHL. I’ve had a few CT scans during the past year (two scheduled and one due to psychosomatic scanxiety symptoms and a heavy dose of caution on the part of my oncologist), and all have come back clean. I recently had an appointment with my oncologist that was almost two years to the day from my last chemo treatment, and happily my blood counts looked great. My next appointment will fall right around the two year anniversary of completing radiation, and if I’m still in remission at that point, the likelihood of recurrence drops again to less than 5% or so. I will only have two check ups and one CT scan per year for the next three years, and then I will be considered “cured”. It’s all really kind of amazing.

Although I haven’t been as active on here as I would like, I am staying in touch with the cancer community and current events, especially issues surrounding blood cancers. As a patient in remission for almost two years, most of what I deal with now are the emotional and psychological effects so blog posts and articles related to this are of particular interest to me.

A month or two ago, a really great article was posted in the NY Times blog by Suleika Jaodad, a young leukemia patient who recently went into remission. It is an insightful and honest look at what life can be like after cancer. While our paths and outlook are not entirely the same, like Suleika, I’ve struggled with the emotional and psychological side effects of cancer and treatment. Reflecting on this article, and listening (for probably the 10th time) to a wonderful talk given by a hilariously funny, honest, and gifted co-worker of mine, Ann Velenchik, entitled, “How Cancer Changed My Life…and Didn’t”, made me think a lot about how my own life has changed in the past two years, both practically/logistically and emotionally/psychologically, and how it hasn’t changed.

(Let me preface all of this by saying that one constant in my life as a cancer survivor in remission is that I preface almost every comment, or even thought, about my own cancer experience with, “I know I’m very lucky to be in remission, but…”. I’m not going to do that in this post but please know that the underlying genuine sentiment is there. It is exhausting to feel like you have to validate/qualify every thought, feeling, or statement you have about your own cancer experience by announcing that you know you’re lucky you didn’t die.)

My friend Ann asserted in her talk that while some things have changed in her post-cancer life, many things have not. In my experience, this is true to some degree. I am back at work full time. I have bills to pay and mouths to feed (they’re the mouths of our two cats, but still). Most day to day interactions are similar to those of my pre-cancer life in that they don’t revolve around, or involve, cancer. I have to clean the apartment, I have to do laundry, I have to grade papers, and I have students who I love but who can simultaneously drive me batty. Basically, the day to day is normal and generally ho-hum.

Very little has changed about me physically besides the fact that I discovered I REALLY like keeping my short hair, and chemotherapy and radiation have apparently killed my metabolism. I lost 40 lbs. in a few months about a year before I was diagnosed after transitioning to a low-carb diet. I gained all of that back and then some during treatment. Emotional eating and not being able to move will do that to a person. The trouble is, I’m now back on the same low-carb diet and added in walking on an almost daily basis, and the scale still isn’t budging an ounce. I feel good internally, but it’s not showing up in terms of weight loss, which is SO frustrating. I know I’m not alone in this among cancer survivors either. Cancer can really make you feel ugly, if you let it.

On the other hand, I feel like a lot of things have changed in my post-cancer life. I’ve felt a remarkable shift in my outlook and what I want from the rest of my life. This sounds cliched, I know, and oddly beautiful in an Eat, Pray, Love sort of way, but it’s not always ideal. While I have this renewed sense of wanting to get out and “Do, Do, Do!”, this doesn’t necessarily jive with how Jeff and I approached life pre-cancer. That can be really hard to rectify, especially because I would like to “Do, Do, Do!” with other people, whether it’s Jeff or other friends but I don’t really know how to initiate that very well. I wouldn’t say that I have a bucket list per se. In fact, like my friend Ann, I don’t really like the idea of having a bucket list. This makes it sound like I have this static check list of things that I must do, and if I don’t, my life will be unfulfilled. I’m always adding to my list of things I’d like to do or places I’d like to go. I just struggle with making it happen.

Unfortunately, I’ve also found new and exciting ways for my anxiety to manifest itself (not surprising). Scanxiety sets in the week or two leading up to a scan and the days between a scan and my check up with my oncologist. I’m obsessed with my overall well-being and constantly monitor every pain, bump, rash, and sleepy day occurrence. However, I’ve now asked my primary or oncologist for a referral to specialists for a couple of things that are bothering me that likely have nothing to do with cancer, like a constant ringing in my ears, but when I get the call to schedule an appointment, I end up deciding not to go after all. I just don’t have it in me to visit yet another doctor and have yet more follow ups and tests. The thought is exhausting, and I’m sure this is a subconscious (or maybe not so sub-) avoidance tactic, because I’m afraid that a seemingly benign symptom could be due to something more serious.

As I’ve mentioned before, I struggled with anxiety/OCD prior to my cancer diagnosis. Yet, I had a remarkable sense of clarity and calmness during my diagnosis, treatment and recovery. I’m sure there’s some clinical psychologist who would love to get their hands on my brain, because I think having OCD allowed me to so singularly focus on doing what I needed to do to get well that there wasn’t the room in my brain to obsess over anything else. I wouldn’t say that I obsessed over getting well, but I think I was so tired and had such an immense sense of resolution regarding my position in life during that time that I couldn’t focus on much else and didn’t care to. It was as if my life had been categorized with a big, old CANCER stamp and nothing else could shoehorn its way into my mind.

Quite frankly, I yearn for that sense of clarity and calm now. I hoped it would stay with me, but it is long gone. I would just love to feel that sense of calm again and I don’t really know how to get there without a catastrophic life event. Consider me unadventurous, but that’s one thing I don’t want to “Do, do do!” again.

My sense of self has changed. That cancer stamp branded me, and I’m definitely a different person coming out of the experience than I was going in, probably in ways that I still don’t understand. What I want from life has changed, I think. I want to have more fun, I want to be more passionate about everything important in life, I want to be the best possible version of me that I can be. I also, probably unfairly, want more from the people in my life. I knew how to be a cancer patient – and quite honestly, I was a really good cancer patient. I think I’m having trouble figuring out how to be me after cancer, and what to expect from the people in my life.

There isn’t a day that goes by when I don’t think about the fact that I had cancer. Sometimes, my thinking about it revolves around the fact that it feels like it didn’t happen to me at all. Did I really have cancer? How could that have possibly happened to me? How is it possible that life could return to normal in some way? On the other hand, some days, having cancer is all I can think about, especially when I’m coming up on an appointment or I have a scan or I’m just generally not feeling well. Why did that happen to me? Why did I survive and so many other people are not as lucky? Why is cancer so seemingly random? A random whiff of windshield wiper fluid reminds me of the burn I would get in my nose from the “red devil” IV push during chemo. I get a look at my scars or radiation tattoos in the mirror. Even the short hair that I love reminds me that I only discovered I like having short hair because cancer didn’t give me another choice.

Yikes, this all sounds like a lot of griping from someone who should be really grateful. Here’s the bottom line, I guess – I am grateful. I’m happy to be cancer free. My life is different in a lot of ways now, for better and worse. I suppose I’m now just lucky to have the time now to figure it all out.

 

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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!

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.

Doctors and Nurses

With my last scheduled chemo treatment coming up tomorrow, I’ve been dealing with some anxiety. You would think that I would be completely excited and ready to face it head on, but for whatever reason, I get nervous before every treatment. In any event, I’ve been thinking a lot lately about how lucky I am to be under the care of amazing doctors and nurses at a great hospital and outpatient cancer center. My chemo treatments have been relatively straightforward, and I really attribute this to the fact that my oncology team has done everything they can to make it as painless as possible.

I am very fortunate to live close to a major university’s teaching hospital, and when I started on my current insurance plan, I made the conscious decision to choose a primary care physician whose main affiliation was at that hospital. My thought behind this was that if I got seriously sick, I wanted to end up in the best possible hospital in the area. Unfortunately for me, this became a reality in November, and I thank my lucky stars that I made the decision years ago to go with a PCP at a teaching hospital.

Jeff was in a smaller community hospital for several days about a year ago, and in comparison, I think there are a number of advantages to being treated at a teaching hospital.

1) The doctors on staff at a teaching hospital are usually faculty members at the associated university’s medical school. This means that they are teaching medical school students and/or residents in some capacity. As an instructor at a competitive liberal arts college, I know that teachers on this level are generally very good communicators as they need to be able to explain things clearly to their students. This also benefits their patients as the doctors in teaching hospitals are more likely to clearly explain what’s going on to their patients in such a way that things are not overly dumbed down but are still clear. Being on faculty at a medical school also means that the doctors are likely to be up to date on the most recent research in their field and also have access to clinical trials and new techniques/equipment that are often rolled out at teaching hospitals before other institutions.

2) I was very fortunate in that I was able to obtain a spot under the primary care of an amazing physician who practices at a family care clinic at the hospital complex. There are a number of benefits to seeing a PCP at a teaching hospital. If she orders any tests, they’re all done at the hospital complex quite easily. It also means that she has instant access to all of my test results and records through their computerized system. This has been an amazing benefit while going through my cancer diagnosis and treatment as I don’t have to worry about having files sent from my oncologist to her or vice versa. It has saved me a lot of time and hassle. Also, when my PCP refers me to a specialist, it will most likely be to another doctor on faculty in the hospital complex. Many of the doctors within the complex know each other, at least if only in passing or name recognition, and you can be confident that you’re always receiving the best possible care.

3) If you are admitted to a teaching hospital, you will be attended to by an entire medical team, or even multiple teams, as opposed to several individual doctors working independently. As I’ve mentioned in a previous post, a team is usually composed of an attending (doctor on faculty overseeing residents/med students), residents (doctors who have recently completed medical school and are learning specialties), fellows (doctors who have completed their residencies but are being trained in a specific sub-specialty) and medical school students. While having all of these people come in your room every morning and surround your bed can be daunting (especially when you haven’t showered or put on makeup/done your hair in several days), it is actually to your benefit as a patient. The team approach means that a number of doctors are looking at your case each day and surely if these students are anything like my students, they’re asking a million questions of one another and the attendings. This ensures that every detail of your case gets close attention. Further, multiple teams might be collaborating on your case; this means that you’ll have double the doctors reviewing your case . For example, when I was on the oncology floor, I had a medical and oncology team who conferred each morning before coming to see me. It was also obvious to me that attendings from different teams were in constant communication with one another.

The benefits of the team approach were more than apparent to me in several instances when compared with Jeff’s experience in a non-teaching hospital.

Jeff saw a number of different doctors while he was in the hospital and each time someone new would come to see him, we would have to explain everything over and over again – from his initial symptoms to what we had talked about with doctors of other specialties who came in before them to things as simple as what tests would be run that day or when he would be able to go home. It was all very frustrating and exhausting for both of us. We constantly felt like no one was talking to anyone else as the doctors and nurses often had different answers to the same questions and we always had to say things like, “Well, Dr. So and so said X, Y, and Z” to inform them of what we understood the outcome of previous visits with other doctors to be. Who knows if we were right in passing along those conclusions. In the end, it all just felt like a giant game of telephone involving Jeff’s health and that something could get lost in translation at any point. It also felt like no doctor read his chart until they walked into his room.

My experience in a teaching hospital couldn’t have been more different. Each morning, a medical student or resident from one of my teams would come by to check in with me and see how I was feeling. He or she would then tell me that they were meeting with the rest of the team and they would all come by after their meeting. I would get one unified message from the teams about what the day held for me in terms of tests or treatments, what specialists would be by to see me, and they would also give me an overall sense of how I was progressing. Just having the med student or resident tell me that he was going to relay how I was feeling to the team and that they were meeting that morning to go over my recent test results, etc. to come up with a plan for my day was so reassuring.

I again had this feeling when my oncologist explained to me that he presented my case at a weekly meeting of both hematology and radiation oncologists to ensure that his treatment plan for me (6 rounds of chemo then radiation if needed) was sound. For older patients with diffuse large B cell NHL, the treatment recommended is often 3 rounds of chemo then 3 rounds of radiation but given my younger age and the location of my mass (in the chest cavity), he wanted to avoid intense radiation. He told me that all of the hematology and radiation oncologists in the cancer center agreed with his treatment plan and said it was essentially a quick way to obtain 20 other second opinions. The team approach definitely afforded him this opportunity that my case might not have received in a non-teaching setting.

When I met with an oncology fellow for the first time, he did ask me to tell him what I knew of my case, like many of Jeff’s doctors. This was not because the fellow hadn’t looked at my chart as he explained he was up to date on my case, but he wanted me to explain what I knew of my case so that he could get a grasp of what I understood and perhaps clear up any misunderstandings. Knowing that this was his reasoning, I was happy to explain what I knew to that point. It’s a classic teaching technique to assess understanding – why don’t you tell me what you know and I’ll help to fill in the blanks? I use it all the time in my laboratories. It’s entirely possible that Jeff’s doctors were doing this, too, but they never explained that to us so it just made us feel like we were wasting our time every time someone new came in to see him. A short explanation of their rationale would have made all the difference.

While being at a teaching hospital has huge advantages, ultimately it has been the care of my amazing doctors and nurses who have gotten me through this, regardless of where they practice.

My primary care physician is amazing. She is unbelievably thorough in that she cares not only for my medical health but also checks in on my psychological and emotional health. She makes sure to get an idea of my work/personal life balance to better understand how my health can be feasibly managed in the context of my day to day life. She visited me several times in the hospital, not as my doctor but just as a friend to make sure I was getting along well. She brought me magazines during my stay and called me several times just to check in. I honestly didn’t think that doctors did things like that anymore.

Prior to this experience, I only saw my PCP for preventative health care. Occasionally, I have had to see a specialist for allergies or migraines. In neither of these cases though did I feel as if my life hung in the balance. However, as a young adult with cancer, I’ve had to place all of my trust in my oncologist to save my life, which is an entirely foreign feeling. Given that, I can’t emphasize the importance of finding an oncologist who you have a good rapport with and who you trust implicitly enough. When you’re facing a cancer diagnosis, the last thing you need is to constantly question whether you’re undergoing the right treatment or if you’re being treated with the best possible care. I think you have to trust your oncologist enough to jump into your treatment with both feet and throw all your faith behind what they’ve prescribed for you. I didn’t really have the luxury of time to obtain multiple opinions but fortunately, I connected with my oncologist in the hospital right away.

I first met my oncologist while I was in the hospital and felt instantly at ease with him. He is friendly and understanding of how difficult a cancer diagnosis is for someone my age, but most importantly he is clear, confident, and honest. He references current data often as well as previous experiences, which are important for me as a biologist. He correctly predicted my diagnosis of diffuse large B cell lymphoma before the final results came in, knew when my hair would fall out to the day, and has successfully treated every side effect I’ve encountered over the past few months. This has made my experiences with chemo much easier.

Most importantly, he and my PCP are both able to admit when they need to bring in the opinion of another doctor when my questions reach beyond their area of expertise. As a teacher, I highly respect anyone on an elevated level in their field who is able to admit that they don’t fully know the answer to a question. When I asked about the specific effects that chemo would have on my fertility, my oncologist conveyed what he knew to be correct and up to date based on current research but also admitted that it wasn’t his field of expertise. He very quickly set up a consultation with a reproductive endocrinologist so I could get all of my questions answered right away. It was that situation that told me I could entrust my survival to him and now I know I made the right decision. I’m so thankful he happened to be the on call oncologist the weekend I was in the hospital and I was placed under his care.

I think the unsung heroes of cancer treatment are oncology nurses. My cancer center tries to keep the pairing between patient and nurse consistent, so I have generally had the same nurse administer my chemotherapy throughout the entire course of my treatment. The nurses often have to balance being a cheerleader with giving patients a kick in the butt when they need it. They learn their patient’s reactions to treatment and try to provide everything they can to make you as comfortable as possible. My nurse and I have developed a good relationship – I know that she loves to sail and she knows I pass out about ten minutes after she gives me Benadryl to prevent hives during my treatment. We have obviously learned very random things about one another, but she keeps me laughing and comfortable during treatment, which is more than I could possible ask for.