Giving Thanks for an Anniversary

I’ve never been a big fan of Thanksgiving for some reason. I mean, I enjoy gorging myself on turkey, stuffing, mashed potatoes, pies and the like – who doesn’t, let’s be honest? I also have great memories as a kid/teenager of going to the Thanksgiving HS football game and playing in the marching band or seeing old friends who returned to our small hometown from wherever they are in their lives. Given that I grew up about a half hour south of NYC, it wasn’t uncommon for my family to go into the city the night before and see the giant balloons being inflated for the Macy’s Thanksgiving Day parade and then watching the parade on TV or even in person the next day.

Those traditions are nice, and I love those memories, but for whatever reason, Thanksgiving has never been a holiday that I’ve particularly looked forward to. For better or worse, it wasn’t a day when I reflected on all that I was thankful for and certainly wasn’t something I led up to for the entire month of November by posting what I’m thankful for on Facebook. I could kind of take it or leave it.

Last year, my perspective on the holiday changed forever. One year ago on this day in 2012, about one week before Thanksgiving, I went to my primary care doctor’s office to take care of a cough that just wouldn’t go away. I walked in the door thinking I would be on my way home maybe an hour or two later with a prescription for some cough medicine and an antibiotic with plans to head to my in-laws for Thanksgiving two days later. As it turned out, I ended up in the radiologist’s office that afternoon and the ER by that night, and after a contrast CT scan, I was I was told that I had a 13 cm mass in my chest cavity that was most likely a cancer of some type. I was wheeled out of the hospital nine days later after a stay that included being diagnosed with non-Hodgkin’s lymphoma and my first chemotherapy treatment.

One year later, I’m ecstatic to say that I’m in remission and finally starting to feel like my life is getting back to normal. I hate to be hack-y and hokey, but my cancer diagnosis and treatment forced me to take stock of all the things that I’m thankful for…an amazingly supportive husband who has made me laugh everyday of our 14 years together, a family who has stood behind me every step of the way with brave smiles on their faces while trying to hide their fears (and tears), and wonderful friends, some of which drove from many miles away to just say hello and sit by my side when I was diagnosed and who continue to be a great source of support. I’m grateful for working at a top notch institution with familial-like co-workers, for having excellent health insurance and a stable job waiting for me once I finished treatment. I also thank my lucky stars everyday for my exceptional oncologists who have gotten me to this point, a primary care physician who cares about her patients as if they were family, oncology nurses who are tough as nails, and hospital support staff who truly give everything they have to their jobs to help heal others.

What I’m most thankful for now, on my one year diagnosis anniversary, is the perspective cancer has given me and the wake up call I received to make me realize that, among other things, I should be grateful for everything I have every day, not just for one day, or even one month, out of the year. It is important to take the time to thank those around you for everything they’ve done, and continue to do, for you. A simple expression of gratitude takes next to no time out of your day but can mean so much to those around you.

As I sat in a hospital bed last Thanksgiving and watched the Macy’s Day parade while eating a Thanksgiving “dinner” for lunch, I wondered if I would ever see another Thanksgiving or holiday season. Would I get to go to another Thanksgiving Day HS football game in my hometown? Would I ever get another chance to go into NYC for the Thanksgiving Day parade? Would I see my family home so beautifully decorated at the holidays? Would I live to see Jeff’s and my kids running down the stairs to open their Christmas gifts?

One year later, I can say that I have every intention of seeing all of those things and more and for all of that, I’m thankful.

So as not to end things on too serious of a note…I wish you a Happy Thanksgiving!

http://youtu.be/baHYCpXKP0s

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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.

Insurance and other lovely things

On Friday, I had lunch with two of my co-workers who have become amazing friends. As I’ve mentioned in previous posts, I was diagnosed with a few weeks of classes left in the fall semester and I was scheduled to teach three lab sections this spring. It is not uncommon for people with cancer to continue to work during their treatment. In fact, a very close family friend continued to teach at her high school during chemotherapy and radiation for her breast cancer treatment. However, as soon as my oncologist learned that I teach biology labs at a residential college, he said there was basically no condition under which he felt comfortable letting me go back to work. The risk for being exposed to serious illness at a college during the winter months was just entirely too great. Plus, once he got a sense of my daily schedule including an hour plus commute each way, he felt like I would just be too exhausted.

I called my department chair to notify him of my situation. Unbeknownst to him, and to me, my two fabulous friends and co-workers had worked out how my remaining labs in the fall and spring could be covered, which largely involved both of them taking on my extra work. This all happened before my department chair and I even knew if or how the college would support my need for a medical leave. Needless to say, this removed a huge burden from my shoulders.

I emailed the Provost of the college, who ultimately makes the final decision on any leave requests by faculty. I explained what I knew of my situation to that point. I expected to have to wait several days to hear back about whether I would be granted a leave and what the conditions would be. I mentally prepared myself for the possibility that I would have reduced pay, or even no pay for a period of my leave, and I just hoped and prayed that my (very good) health insurance coverage would continue.

To my surprise, the Provost wrote me back within just a couple of hours, first to express his sincere concern and second, to let me know that I would continue to receive my full salary and healthcare benefits while on a semester of leave, so long as I could complete whatever work I was able to from home for the fall semester. This essentially meant grading papers and a few final homework assignments. I also provided the colleagues who were graciously covering my labs for the last few weeks with my teaching prep materials, like pre-lab introduction PowerPoints. Otherwise, I would be on leave from mid November through the following August, which is when I anticipate my full time return for the fall, with full pay and benefits.

Having gone through FMLA leave with Jeff when he was sick last year, I knew how amazing this is and I recognize that this is one of the many benefits of my job at a small private liberal arts college. Even then, i know that not every college and university will offer full pay throughout a leave. i know of many that offer 12 or 16 weeks and anything beyond that is unpaid. There is a sense of community within my department, and even on the college level, that I think is really unique to our institution.

I was already appreciative of my health insurance coverage and pay prior to starting treatment at the outpatient clinic in December, but it was brought to a whole other level when I started treatment there and learned more about other patient’s situations. I can’t count the number of times I overheard meetings between patients and social workers. There are so many patients there who either didn’t have insurance or worked a job on hourly wage and would lose their insurance if they didn’t work a certain number of hours per week, which can be next to impossible when you’re getting chemotherapy.

It didn’t take too much time for me to recognize the luxury of not having to work while getting treatment and simultaneously not having to worry about how we were going to pay our bills or put food on the table. Treatment is really difficult and stressful. To have to work during that or risk not making enough money to pay the day to day bills and lose insurance is mind boggling, although certainly people do it out of necessity as would I if I didn’t have amazing support at work.

When I was in the hospital, a social worker came by and asked if she should look into my insurance coverage for me before I began treatment so I would know of any possible issues ahead of time, but I told her not to worry about it. Knowing insurance wouldn’t cover something wasn’t going to cause me to decline treatment so if anything, it would cause me more stress to know than not at that point.

Fortunately, my insurance has covered everything (knock on wood, cross your fingers and toes), no questions asked. This is a good thing because my hospital stay ran up a $100,000 bill and each chemo treatment is $25,000-30,000. With six treatments and the stay, that’s roughly $280,000, not including any of the doctor visits, blood draws/tests, or scans.

Say what you will about laws mandating coverage for all, I wouldn’t want to be in a situation where I didn’t have insurance or had cut rate insurance that would only cover a small portion of my bills. It would financially sink Jeff and me, further adding to our stress, which can’t be good for our health. Unfortunately, many patients in the outpatient clinic I go to are in this situation. The thing is, cancer tends to sneak up on you. You don’t expect to get it and you’re taking a huge roll of the dice if you go without insurance, whether it is by your choice or not.

I’m just very lucky to work at an amazing school with fantastically supportive co-workers. Every cancer patient should be so lucky.

“I just wish it wasn’t coming out of me”

Shortly after I was given the news of the grapefruit in my chest cavity, I was admitted to the hospital and ended up staying there for about nine days, including Thanksgiving, through my diagnosis and first infusion chemotherapy treatment. Being inpatient throughout the entire process of my biopsy, diagnosis, and first treatment is quite rare. Most patients have to wait a week or two for a biopsy, another week minimum for their results, and usually another week or so for their first treatment.

Once he was assigned to my case, my oncologist calculated that my tumor grew to about 13cm in, likely, 4-6 weeks. Conservatively, it was growing at a rate of about 1/3 of a cm per day. Given that, and its location over my lung and heart, there was a possibility that it could grow so quickly that it might damage my lung and/or occlude my trachea/esophagus. My oncologist didn’t feel comfortable letting me leave the hospital knowing that was a possibility. Also, my tumor was growing so quickly that he didn’t think I could afford to wait another week or two before receiving my first treatment. Staying in the hospital meant that they could move the process along at a much faster rate.

Most of my stay was a blur of getting blood drawn, vitals taken, meeting with doctors of all types, eating mediocre food and watching a lot of TV. But, there were some notable events in terms of my diagnosis and treatment.

The first morning round: Years ago, I purposefully chose a primary care physician who was based in a university hospital. (In the future, I’m planning to write about how I think this has contributed to the successful treatment I’ve received thus far.)

As I’ve mentioned already, there are multiple levels of physicians in a university hospital, and once I was admitted, I had to become (very quickly) used to the fact that, each morning, a small army of doctors would enter my room for rounds to check in on how I was feeling, listen to my heart and lungs (or really, lung in the singular since my left lung was not inflating by that point), and let me know what the plan was for the day in terms of tests, procedures, etc.

These visits were kind of odd as typically a resident who was assigned specifically to my case would be the one to do all of the talking while the interns, med students, and other residents would stand around my bed, literally looking down on me. I never had any idea who to look at when I was answering questions since only one was doing the talking but they were all taking notes and nodding along. I felt like a bad dinner party host focusing all my attention on one guest, but eventually I got used to it. The attending who was supervising the team would often stand in the back of the group, and although I had trouble identifying him/her at first, it was good to know they were there making sure this little army didn’t go AWOL or run amok on my health.

I remember the first morning round quite clearly. The resident tentatively knocked on my door and the team entered my room. Introductions were had all around, as if I’d remember anything but the first name or two. I could tell by their body language and initial introductions that they were unsure as to how I was handling the information that a large tumor had grown in my chest over a period of a few weeks, and we didn’t yet know what it was. This was confirmed when the resident handling my case said, “We know you’re probably going to need some time to process what’s going on with your health as it must be very shocking”, with a look of genuine sympathy and concern on his face.

When I received the news the night before, I did have a bit of a breakdown when I called my husband. Mostly, I was scared for him. I knew I could handle whatever was about to come my way, but I also knew that a cancer diagnosis meant that I might die. What scared me was not that prospect, but thinking about what would happen to Jeff if I wasn’t here. My husband is more than capable of taking care of himself, and I rationally know this. But, we’ve been together for over 13 years and I imagined all the things that I do in our relationship that he would have to handle on his own. That made me really nervous, but once I heard his voice on the phone and knew he’d be with me in the hospital soon enough, I calmed down.

After I hung up the phone with him, I took about five minutes to pull myself together. I then had the clarity of thought required to realize that we needed to figure what exactly “it” was and determine a treatment plan. I made the resolution then and there that I was not going to be emotional about this situation, and more importantly, I was not going to allow myself to think that I could die. I figured that I’m young, I’m smart, and I’m tough. Whatever “it” was, it was not going take me down.

So, when the resident said I must feel like I needed some time to process things, I took control of the situation. I did not want to be handled with kid gloves and I didn’t want to prolong the process. I said, “Doctor, I’m done processing what’s going on. I took my time to do that last night in the ER. Now, I just want us all to be productive and figure out what this is so that you can develop a treatment plan and we can move forward. I promise you that I will be a stellar patient and I’ll do everything you ask, so long as I feel like we’re moving towards nailing down a diagnosis and treatment”.

The mood in the room instantly changed from one of empathy to one of understanding that i wasn’t messing around. The resident said, “Okay, then. That’s what I like to hear. Let’s talk about our plans for a biopsy so we can move forward. We need that before we can do anything else.”

While I sincerely appreciated their concern for my emotional well being, I feel strongly that by taking control of the tone of their approach to me, I kept everyone moving towards getting me diagnosed and treated as soon as possible. I didn’t need touchy feely…I needed action. That’s what would make me feel better emotionally – to know what was going on and how the team was going to handle my care. Once I had answers, I knew I would be okay.

The biopsy: The resident explained that they wanted to do my biopsy via a bronchioendoscope, which meant they would send a tube with small camera with a biopsy needle of sorts down my trachea to obtain a sample from the tumor and inspect the tumor visually. Unfortunately, this was considered a surgical procedure and they wouldn’t be able to get me scheduled for another couple of days, especially due to the Thanksgiving holiday.

I asked if there were any other options that would get the biopsy done sooner. In fact, they could do an ultrasound guided biopsy where a biopsy needle would be guided into the tumor through my chest cavity using the visual guidance of an ultrasound. This could be done that day or the next, depending on the schedule, but they warned me that this type of procedure was less accurate in terms of obtaining enough viable tissue from the tumor in order for the pathology lab to make a diagnosis. If they didn’t get enough tissue, they would have to reschedule a bronchioendoscopy and that could set us back another few days. On the other hand, that procedure would almost surely obtain enough tissue on the first shot.

I was determined to get things going as soon as possible, so I said I was willing to have the ultrasound guided biopsy, even though there was a greater chance of not obtaining enough tissue. I figured the odds were still in my favor and with the holiday coming up, I wanted the pathology lab to get my samples as soon as possible.

Sure enough, they were able to get me in that day for the procedure. I was given a mild sedative and rolled into a room with the ultrasound equipment. The resident and attending came in and introduced themselves. While they set everything up, they asked what I did for a living and I told them I was a biology lab instructor at a college and my focus was anatomy and physiology. (This generally excites doctors as I think they feel like we speak the same language.) The resident who was going to do the biopsy was standing on my left and the ultrasound screen was on a cart to my right. They numbed up my chest with lidocaine and asked me to turn my head to the right. They mentioned that I might want to close my eyes so i couldn’t see the screen.

“Are you kidding?! I definitely want to watch this”, I said. The anatomy geek in me thought seeing an ultrasound of my chest cavity was amazingly cool. The neurotic side of me thought that if the resident didn’t grab the tumor, I would want to know exactly what happened and what better way to do that then seeing the screen myself?

The resident announced that she would begin the procedure. I could feel pressure being applied to the site of needle insertion but I didn’t feel any pain. A moment or two after she started, I saw the needle on the screen aimed at a solid looking mass that appeared as she moved the ultrasound equipment over my chest cavity. It occurred to me that the mass was THE mass. It was the tumor, right there in front of my eyes.

“Is that it?” I asked the attending. “Yes, that’s the tumor right there”, he replied. I paused for a moment.

“That is absolutely amazing and cool…I just wish it wasn’t coming out of me”, I replied.

I saw the needle go into the mass and the resident said she obtained sample 1 and I saw the needle retract out of my chest. She placed the sample in a jar being held by the attending. He asked me if I wanted to see it – he told me few people ever did. Of course, I wanted to see it.

It was white, very long and thin, and floating around in some sort of fluid, maybe ethanol, in a small jar. I started at it for a second knowing that sample could be what tells all us what was growing in my chest cavity. Meanwhile, the resident went in again and obtained a second sample. The attending showed it to me, they bandaged me up and told me I might feel like I got punched in the chest the day. (I definitely did…I felt like I got walloped but good.) I was rolled out of the room into recovery and eventually brought back to my room.

The port placement procedure: The wait was on for the pathology lab to get a diagnosis. It took about two days before they were able to say that it was definitely a type of lymphoma, and a full week to obtain the final specific diagnosis that would determine my course of treatment.

The wait between day 2 and 7 was frustrating – not because I was bored or scared but just because I wanted something to happen, anything to happen to move us forward. After the Thanksgiving holiday and the weekend, my oncology team was able to schedule me for my port placement surgery.

Rather that having to place an IV in my veins each time I went in for treatment, my oncologist wanted to have a portacath, or port, placed in my chest on the right side. Here’s what one looks like:

Portacath

It’s placed under the skin and the tubing connecting to that peg off of the metal disk is fed into one of the jugular veins that connects to the right atrium of the heart. When you go in for treatment, the nurse will place a needle in the plastic septum in the circle as you see above and then your meds are given to you that way. Having one of these ports is convenient as you don’t need to be poked for an IV every time you go for treatment. Plus, you can shower/bathe easily as all of this is under the skin completely.

For this procedure, I was not placed under general anesthesia, but I was heavily sedated. Once in the surgery room, I was wrapped in sterile blankets from head to toe with only the right side of my chest exposed. I asked the nurses to prop me up a bit as they initially had me laying flat but the tumor was making it impossible for me to lay that way without coughing. The last thing I wanted was to have a coughing fit while a surgeon was making incisions near my jugular vein.

Eventually, the surgeon came into the room but I couldn’t see him because my head was wrapped up tightly in sterile blankets and turned to the left so my head wouldn’t get in his way. Since there was a huge row of monitors to my left, he couldn’t come around to that side.

He just said, “Jocelyne, I’m Dr. M and I’m going to be performing your port placement procedure. You’re going to feel a little pressure now as I’m going to begin the incision”. The nurse asked if she could give me another dose of sedative, which he agreed to, and although I felt him beginning to make the incisions needed to place the port, I quickly fell asleep.

Next thing I knew, I was being woken up by the technicians and nursing staff while I was rolled off to the recovery room and the next step in my treatment was complete.

Getting the final diagnosis: The port was placed on a Wednesday, eight days after I was admitted. We were still waiting for the final diagnosis when I returned from surgery. Around noon that day, it came in with my oncology team.

I was officially diagnosed with diffuse large B cell lymphoma, a form of non-Hodgkin’s lymphoma (NHL). Apparently, the pathologists were going back and forth between two types – diffuse large B cell and a much rarer form called Burkitt’s lymphoma. My tumor growth had really outpaced traditional markers in the blood work for diffuse large B cell but they finally came to that conclusion, which is what my oncologist suspected all along. With a diagnosis with diffuse large B cell, they typically would do a bone marrow biopsy and possibly a spinal tap to determine if the cancer had spread to the bone marrow or cerebral spinal fluid, but since an abdominal scan revealed no signs of tumors, my cancer was localized to the chest cavity (specifically the mediastinum), and the blood work showed no signs of progression, it was determined that I was in an early stage with a really aggressive tumor.

My oncologist explained that having an aggressive tumor was actually beneficial for treatment (counter-intuitive, no?). Chemotherapy is designed to destroy fast growing cells and prevent them from growing in the future. To do this, it attacks cells during their process of division. As it turns out, the more often cells divide/multiply, the more opportunities the chemo would have to attack the cells. While I would prefer to have nothing in my chest cavity except what should be there, it was good to know that this tumor’s aggression would work to my benefit.

With that, he explained that I would start my first round of chemotherapy in a few hours and they would do it in-patient so they could monitor me closely throughout the process. If I tolerated it well, they would schedule me for the remainder of my treatments in their outpatient clinic and I could probably go home the next day and that’s exactly what happened.

“It isn’t good…”

Since my last post, I’ve thought about a comment that a colleague made to me after her own battle with leukemia – nobody thinks their diagnosis “story” is as interesting as the patient does. To a degree, I think this is true and I hesitate to go into more detail, but in the off chance that it might help someone else (and mostly for my own documentation, as if I could forget any of this), I’ll continue.

The resident in my primary’s office ordered a chest X-ray. Because her office is located in the hospital complex, I knew that getting an X-ray was fairly quick and straight forward. It was still early in the afternoon, and I asked the resident if he thought I should go that day to get my X ray done or if he thought it could wait.

He said, not surprisingly, that I might as well get it while I was there. Once he got the results back, he could prescribe something to clear up the phantom congestion, or at least figure out why I’d been doing everything but hacking up a lung for the past month. But, he said it was entirely up to me – I could come back at a more convenient time if I wanted. I ended up deciding to get the X-ray since I was already there, and I thought it would be a quick in-and-out sort of thing.

I had an X-ray about 15 months prior for an unrelated issue, and in that case, the technician took the images and sent me on my way. The entire process took, maybe, 10 minutes. Here comes sign #1 that this was not going to be a normal day – after the X-ray this time, the technician asked, with a voice that was an odd combination of alarm and sickening sweetness, if I would take a seat in the waiting area as she wanted the radiologist to look over my X-ray before I left. I took a seat and waited…and waited…and waited what seemed like an hour, although I’m sure it was only 15-20 minutes.

The radiologist found me and explained that he believed my X ray showed that the upper and middle lobes of my left lung were collapsed and he had my primary doctor on the phone to talk through options. She explained that the collapse could be due to mucus blockage since I’d been coughing so much or perhaps I had the start of pneumonia. She said there was an outside chance that what the radiologist thought was a collapse was actually a growth of some kind, but she didn’t think this was likely given my health and family history. Plus, I’d just had a complete blood work up less than a month prior that came back normal. Either way, she wanted me to get a CT scan so they could get a better sense of what was going on.

However, there was a potential insurance issue (surprise, surprise). If she ordered the scan via an outpatient facility, it could take several days to get authorization, which of course, meant several days that I would still be feeling pretty crummy and not knowing what was going on. What was worse was that the insurance company could initially decline the request for the scan, citing the X-ray as the definitive diagnostic tool, even though it had raised more questions than it answered. In this case, my primary would have to write a rationalization of sorts and this could ultimately extend this whole process out to a week or more before I could get the scan…no wonder doctors are fed up with our current insurance system.

Alternatively, I could go to the ER where my primary would call ahead and ask for a CT scan. If the scan was ordered through the ER, and not an outpatient facility, it couldn’t be declined and no prior authorization would be needed. She said the decision was entirely mine as the ER trip would take a bit of time but she thought it would be the ideal option if I was up for it.

I have to say that, at this point, I still wasn’t overly concerned. I figured, at worst, I had a bad case of bronchitis, or maybe walking pneumonia. While my primary did mention the possibility of a tumor, I really didn’t think that was likely. I’m sure that lack of concern made it easier for me to go to the ER to get the CT scan. I figured whatever was going on was something that could be handled easily so there was nothing to fear, no reason not to get the scan, so off I went.

Sign #2 that things were not so simple and straightforward…upon receiving my chart from my primary and the radiologist, I was pushed through the ER about as fast as anyone in a city/university hospital could possibly be. Before I knew it, my vitals had been taken, blood and urine collected, EKG performed, and I was whisked away to a “room” and asked to get up onto a gurney.

The ER resident came in to introduce herself. When you go to a major teaching hospital, you can expect to be seen by attendings (Mom and Dad doctors), residents (young adults doctors who are somewhere between just being able to rent a car and the parent doctor stage), interns (teen doctors who still need some oversight), and med school students (baby almost-doctors). This resident reminded me a lot of my students, although she was obviously at least 5-6 years down the line.

Anyway, the ER doctor sent me on my way for a CT scan with contrast. The technician told me that they would be injecting contrast dye via my IV. He also said not to be alarmed, but the contrast would be warm and would make me feel like I had to urinate, but he assured me that I wouldn’t. I told him that me and my bladder would decide that. He was not amused.

Sign #3 that things were not too good…the tech took the CT scan and got me back on the gurney. In the room behind the scanning equipment sat several (I’m assuming) technicians and radiologists who I could see clearly through a window. I felt their gaze on me as I was being rolled back out of the room and when I met their eyelines, they quickly looked away. Not good.

I was returned to my little holding room and waited…and waited…and waited some more. At this point, I knew something more serious than I anticipated was going on. And then the answer…

The young adult doctor walked in and asked if she could turn off the TV. (Sign #4 and really just a bad sign in general. If you’re watching the TV in your hospital room and your doctor asks to turn it off when they come in, brace yourself.) She sat down in the chair next to my gurney and took a deep breath. She said words i can still hear.

“The results of your CT scan have come back, and it isn’t good.” I got the sense that this was one of the first times she had ever had to deliver this kind of news. She’d probably imagined this moment many times. I had not.

She explained that the “collapse” was not actually a collapse. Rather it was a mass that was approximately 12-13 cm in size sitting over my left lung and my heart. I asked, “12-13cm?! Do you say centimeters or millimeters?” She confirmed that I had something the size of a grapefruit in my chest cavity between my rib cage and lungs/heart. She explained that an oncologist was on the floor that night and suspected that the mass was malignant, given that just 15 months ago there was no sign of anything on my chest X-ray. She apologized for having to give me this news and not being able to tell me more at that point. There wasn’t much more she could tell me at that point, which was probably just as frustrating for her as it was for me.

She asked if I had anyone that I wanted to call. I wasn’t planning on being in the hospital for more than an hour or two that day, and some 8 hours later, my cell battery was dead, and in fact, yes, I did have some people I would need to call. She gave me her own cell phone so I didn’t need to go out into the hall to use the public phone. At that point, I made a really difficult phone call to tell my husband what was going on. After he got to me, I called my parents – although he spoke to them while he was on his way. I was eventually admitted and the process of getting a specific diagnosis began.

In retrospect, there were two points on the day that I was admitted to the hospital where things could have ended up very differently. I thank my lucky stars every day that I decided to just go get the X-ray, even though it was a seemingly minor inconvenience. I could have easily walked out the door of my doctor’s office and gone on about my day with the intention of coming back that might have gone unfulfilled.

Above all else, I’m beyond thankful that my primary doctor encouraged me to get the CT scan in the ER. I’m thankful she thought through potential insurance issues while also keeping my health and well being at the forefront of her concern. Everyone should be so lucky.