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.

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What a difference a day makes…

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

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

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

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

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

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

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

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

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

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

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

So about that radiation situation…

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

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

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

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

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

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

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

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

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

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

Getting Back to a New Normal

In an attempt to get out and stretch my post chemo legs, Jeff and I went to Boston this past Sunday evening and Monday, Patriot’s Day. Jeff’s mom gave us a pair of tickets to the Patriot’s Day Sox game at Fenway, which we took happily and gratefully. The game traditionally starts at 11am on Patriot’s Day and we didn’t want to get up at the crack of dawn on Monday to get into the city. Plus, driving into Boston on Patriot’s Day is next to impossible and the thought of taking multiple lines on the T (Boston’s subway system) was tiring for me, so we decided to stay over the night before. We planned to meet up with friends we hadn’t seen since my diagnosis for breakfast, head to the game and then meet up with friends afterwards at a local pub to hang out and watch a bit of the Boston marathon.

It was so great to see friends at breakfast and show them that I really am doing well, that I look pretty normal other than the head scarf covering my bald head. The game was a lot of fun – we had a great seats (we were in the infield grandstands, which means Jeff and I were shoehorned into seats designed for Bostonians of 1912, not 2013) and the weather was beautiful, although it was quite chilly under the press box overhang. The Sox won in a walk off, which is always exciting. We met up with our friends about a mile from the end of the race around 2:15pm or so. We were watching the runners and cheering them on, and I started to think that I was beginning to feel somewhat normal again. That didn’t last for long but it wasn’t my health that would disrupt this beautiful day.

For those reading who are not from New England, I feel the need at this point to explain the feeling surrounding Patriot’s Day in Boston, as up to this point, this Patriot’s Day felt like many others. Patriot’s Day celebrates those who started and fought in the American Revolution and it is a state holiday in Massachusetts and Maine. It starts with a re-enactment of the battle at Lexington and Concord early in the morning, the Red Sox always play at 11am and the Boston Marathon begins around 9am and continues throughout the late afternoon. The marathon starts in the suburbs of Boston, in Hopkinton, and ends in Copley Plaza on Boylston St. in downtown Boston. The Sox game usually lets out an hour or two after the top runners finish, but this allows people watching the game to catch runners who start later in the day, usually those who are running for charity. People line the marathon route and cheer on runners they know and runners they don’t, in an event that really brings the city together. If you’re lucky, the weather is seasonable (of course this is New England – last year it was 87 degrees, for example) and it’s a day that everyone in the city just celebrates being out and about after a long winter. It’s something that everyone in the area looks forward to as it is uniquely Boston, and I can’t really think of an equivalent in the NY metro area, where I grew up.

Obviously, this Patriot’s Day was not full of celebration. All of the sudden, several of us started getting text messages asking if we were okay. We had no idea what was going on, so we opened Twitter or Facebook and saw the horrifying reports that two bombs had gone off at the end of the race, just a mile from where we were standing. Suddenly, we noticed news helicopters overhead and we heard that the marathon was being suspended. We then realized the severity of the situation, and a friend of ours offered to drive us back to our hotel so we could get our car and get out of the city. Because I hate feeling like I’m putting people out (and I’m still not always completely aware of/in tune to my physical limitations), I told her we would be fine and we could walk back (over 2 miles without road closures). Jeff looked at me like I had seven heads and said, “We are going – we need to get out of here”. He caught up with our friend, we eventually got back to our hotel and drove home relatively easily. I am so thankful that he was thinking of my health and well being – with all of the confusion and road closures all over the city, I never would have been able to walk back. The “T” (subway in Boston) was closed in critical areas we would have had to pass through and finding a cab was never going to happen. Had we not gotten this ride home, we might still be in Boston.

It wasn’t until we got home and turned on the TV that we fully could see how horrible things were just a mile from where we were standing. It was absolutely horrifying, and I think Jeff and I were both shaken by seeing something like this happen in a city we love and the city in which Jeff grew up. You just don’t think something like that could happen there. It is a beautiful city full of history and passionate people. It’s an energetic city, full of young adults starting out and kids enrolled in one of the many colleges in and around the city. It’s a city that I identify with much more than my “home” city of New York. I’ve always felt at home and comfortable in Boston from the moment that Jeff took me up there with him for the first time. I just couldn’t imagine that the scenes we saw on a street we walk down all the time were actually real.

Looking back at it now though, I think I was able to handle it all fairly well given that I’ve had to face my own mortality very recently. Having cancer forces you to directly face something that is actively and viciously threatening your mortality. You have to accept the fact that your life span is finite and, ultimately, you cannot control when your time will come. I do think being diagnosed with cancer has permanently changed my outlook on events like this.

Over the past few days, I’ve been glued to TV news and social media for any new information about this horrible attack. I look at the first responders in awe and cannot imagine the bravery had by those bystanders who immediately ran towards the blast sites to help the injured. My heart sincerely goes out to the families of those who were killed in the attacks and to those who were injured, especially those who lost their legs. The future will surely be difficult for them, but having cancer also has taught me that people are much stronger than we think. I’m sure those victims will fight to get their lives back to a new normal once they’re able. Anyone who can endure multiple surgeries and the pain surely involved has the strength and ability to learn how to thrive and push forward.

In the meantime, I’m trying to sit still today and rest while eating a low carb/sugar diet in anticipation of my PET/CT scan tomorrow. I’m hoping it will show that the cancerous cells are no longer active and then I can get back to my own new normal.