The countdown (or how I use cancer as an excuse to eat junk food)

About a week from today, I’ll be completely finished with the last round of chemotherapy, 21 days out from the first day of treatment 6. My plan is to go back to a low carb, low fat, high protein diet after that weekend on Monday, April 8th. Previous experience has told me that trying to get back onto a healthy diet on the weekend is a fool’s errand.

I’m actually looking forward to eating raw fruits and vegetables again without worrying about bacterial infection. Mind you, I really only need to maintain a neutropenic diet (no: uncooked or undercooked meats, raw fruits/veggies, live culture yogurts, blue veined/soft cheeses/cheeses with uncooked vegetables/fruits within, eating from buffets/yogurt machines/draft lines, among other things) for about 10 of the 21 days in each round. However, I’ve taken the liberty to extend this throughout most of the 21 day cycle in the name of my health and my desire to eat things that are horrible for me.

When you remove all of those things from your diet to go on a neutropenic diet, you’re really left with foods that are not palatable (over cooked vegetables and meats) or unhealthy. Think about most standard restaurant menus and see how it doesn’t jive with a neutropenic diet- all of the salads are off limits and any sandwiches with raw vegetables (some can easily be removed but many cannot and/or make up a significant part of the sandwich) don’t fit either. I could eat basic grilled chicken with steamed veggies, but that gets to be very boring over time. What does this leave? Food I haven’t eaten in a long time – fried, high fat, carb-loaded, cheesey stuff.

In other words, amazing, wonderful deliciousness.

This amazing, wonderful deliciousness means though that I very well could be the only cancer patient in the history of cancer who has gained weight during chemotherapy. This would only happen to me. I’ve always struggled with my weight so losing as much as I did this summer on a low carb diet was a huge deal, and I certainly could have stood to lose more. In fact, when I was trying to see the bright side of life after my diagnosis, I thought I might actually benefit from weight loss during treatment. No such luck since I had no problem eating the brownie on my dinner tray the night was diagnosed. My thought? “I was just told I have cancer. I deserve to eat this brownie”. Goodness, was it glorious?! Anyway, my weight is not yet where it was before I started the low carb diet, but I’m certainly getting there. Thank God I only had six rounds of chemo and I have a lot of pants made, in part, of spandex.

I jump on the scale every morning, as if the numbers will somehow go down while I’m eating burgers and fries and ice cream. I pretend that my weight gain is due to the prednisone, and some of it probably is, but frankly I know it’s mostly because I’m eating horribly and I can’t exercise much between whole body fatigue like I’ve never felt before and not having a decent lung capacity right now. The fatigue will go away eventually and I’ll get the lung capacity back to where it needs to be and then I will have no excuse for not exercising.

I blame my eating on the neutropenic diet, too, but honestly it’s just too exhausting to think about eating well while I have cancer. I know I should be eating as healthfully as possible since it will help me heal but this food is one of my only pleasures in life right now, along with being able to watch as many reality shows as I want during the day. This is completely not emotionally healthy, but I can only tackle so much in a given day.

So for now, I will eat my ice cream and onion rings and buffalo fries with a smile on my face knowing that on Monday, April 8th, I’ll go back to a healthy diet and I’ll incorporate a bit of exercise each day. Hopefully, the weight I’ve gained will be lost quickly. In the meantime, I’m counting down the days and will be sure to get in all the good stuff while I can.

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.

With a Little (okay, a Lot of) Help from My Friends (and Family)

I would never, ever wish the experience of being diagnosed with and treated for cancer on anyone, but one of the only things that has made it even remotely easier is the support Jeff and I have received from our friends and family. If anyone has to go through this experience, I can only hope that they receive the kind of love and support that we’ve gotten from them over the past few months.

Jeff and I are both close with our families, so we obviously had their support from the start. Both my mother-in-law and my parents visited me in the hospital and either Jeff or I have been on the phone or email with them and my sister nearly constantly since I’ve been diagnosed. Our extended family has also been amazing, between their cards, supportive phone calls and Facebook messages. We’ve always known that we are blessed to have a great family around us, and certainly this experience has solidified that.

Like many teenagers, Jeff and I both moved away from home for college, and we ended up placing roots in the state where we went to school. We love it here and have established great lives for ourselves. Because we live fairly far from our families, our friends really have become like a second family for us. After this experience, I would venture to say that many of our friends are now just straight up family, let alone a second family. You really do learn who you can lean on in the event of an emergency.

When I was admitted to the hospital, I was so fortunate to have friends come by to visit. Friends came from hours away or just down the road to spend time with me. Nothing could have brightened my room more! During that time, it was amazing to have friends come by to laugh with me while I was getting poked and prodded and even getting my first chemo treatment. Quite honestly, I think the visits were just as good for them as they were for me. Allowing people to come to my room let everyone see that I wasn’t some sort of meek and measly specimen laying in bed, unable to do even the most basic of things. I essentially looked the same and could do everything on my own – the only difference was that I became tired a bit more easily. Plus, I really enjoyed being able to talk about anything but cancer and to catch up on what was going on in the outside world.

Of course, many of our friends brought or sent things to us that were so helpful during a time that was stressful and difficult. Some items I really needed and other I just really appreciated after being in the hospital for several days?

1) Extra pairs of normal underwear. “Granny panties” takes on a whole new meaning when you see the underwear that the hospital will give you if you don’t have your own clean set –  we’re talking cotton tent-like monstrosities. Huge (although comfy) things that are embarrassing to know you’re even wearing, although fortunately for me, no one really saw them.

2) Flowers brought and sent that were gorgeous and definitely brightened up my room. It’s commonly thought by many florists that cancer patients can’t have fresh flowers in their room due to the potential for bacterial infection. This is true for patients in the nadir for white blood cell counts, but I was able to have them since I hadn’t started my treatment until the very end of my stay.

3) My parents brought a huge care package of items – pajamas with a button up top (really helpful for patients with ports in their chests, like me), comfy pants and thermal tops, slippers, an electric waterproof razor (helpful to prevent cuts/infections), and a few other items.

4) One of my very good friends and my parents brought up hard candies (LifeSavers, losenges, etc.) to help with dry mouth and the horrible taste of chemo and small tubes of scented hand lotions and sanitizers.

5) Friends and family also sent us pre-made frozen food from Omaha Steaks. These gifts were amazing as they have lasted a long time and have definitely made things easier when Jeff or I are too flat out exhausted to cook. Unfortunately, chemo makes this happen more and more often now.

Of course, for some friends it was too difficult to get to the hospital so they called, Facebook messaged, texted or IMed me. These messages and calls were also greatly appreciated. It definitely helped to pass the time. There’s only so much day time TV you can watch in the hospital. I also felt in touch with the outside world and it was just good to know that I was in everyone’s thoughts.

A number of people have asked what they can do to help the cancer patients in their lives and I do have some suggestions.

1) Just DO, don’t ask. I am generally independent, and frankly, stubborn. I really don’t like admitting that I need help. If someone offers me help, even now that I’m well into treatment, I don’t often take them up on it just because I don’t like to feel like I’m a burden. However, so many people have wanted to help us out and I can tell you that the biggest relief has come from friends and family just jumping in and doing things for us. Even things like asking when friends can come to visit can feel overwhelming at times, so when I was in the hospital, the easiest visits to arrange were the ones when friends said, “Can I come up this evening?” and the instant I said, “yes” and couldn’t even get out the, “but you don’t need to visit me”, they were in the car and on their way.

If you want to help out by doing basic chores around the house or cooking something for you friend, just say, “I would like to come by to help out with housework (laundry, cooking, etc.). What time can I come by?” rather than, “Do you need help with housework?” or the even trickier and often ingrained phrase, “If there’s anything I can do to help, please let me know.” I will readily admit that I used this phrase all too often. It does sound good and we all have the best of intentions when we say this, but when you’re a patient, the last thing you want is to inconvenience anyone and you can’t help but feel like you’re a pain in the neck if you ask for help. It’s also just overwhelming sometimes to have to think of a way that someone can help and setting it all up. Believe me, any little thing you can think of to do to help will be much appreciated.

There are a number of things that can be done to alleviate this feeling for the patient. Someone in your life could keep track of what needs to be done and dole out responsibilities for those who can help, but probably the best thing I’ve heard about is the website called www.lotsahelpinghands.com. Using this site, a patient can sign up for things they might need help with on a schedule (say, picking up their kids from day care one day or a ride to chemo) and friends/family can sign up as caregivers and volunteer to help out with the tasks on the schedule. It removes the burden of asking for help from the patient and allows caregivers to sign up for the items that work with their schedules. It’s really an amazing idea. A co-worker of mine offered to set one of these up for me, and although I fortunately didn’t need too much help during chemo, I think it’s a great idea for busy families with cancer patients at any level.

2) Call, email, text or Facebook message just to say hello/check in. It’s so nice to be thought of and to have folks ask how you’re doing. So many friends from high school and other parts of my life have reached out to me since my cancer diagnosis via Facebook. Life has a tendency to get away from us over time, but things like cancer tend to draw everyone together again and I can’t say how nice it is to get a message of support from friends who I haven’t talked to in awhile. It is also a nice chance for us to catch up on non-cancer related things. Don’t be afraid to diverge the talk away from cancer once you get caught up with how your friend is doing. I know I greatly enjoy talking about anything but cancer sometimes so it is really nice to hear what’s going on in other people’s lives, too.

3) If you’d like to give a gift to the patient in your life, little things can mean a lot. Having little lotions, candles, books you’ve already read, and stuffed animals (like the adorable panda that Jeff bought for me) are really comforting and help to pass the time. Pictures to brighten up their hospital room or home are also wonderful. One of my really creative co-workers made posters with pictures of my students holding funny signs and made a scrapbook with really sweet messages from folks in my department. It’s so nice to flip through it every now and then to remind myself that I have a life to return to once this is all done. I also received some very generous gifts, like an iPad, that made my treatments so much more bearable but this was really going above and beyond. I’ve been reading a lot since I came home so an Amazon or iTunes gift card for books is a great idea as well.

All in all, we have been so fortunate to have the help and support of our friends and family. I really couldn’t be more grateful.

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.

Marathons, Walks and Bike Rides – Oh my!!

I have been so fortunate to have the support of family, friends and co-workers throughout my diagnosis and treatment, and I plan to write more about that in the coming weeks as it’s been a huge part of my success in beating cancer so far.

I’m sure we all receive requests occasionally from folks we know who are participating in a walk, run or bike ride to raise money for charity. I’ll be honest and say that I used to get overwhelmed by these requests to the point where I would just overlook them. Now these requests have taken on a whole new meaning for me, especially when the charities involved relate to cancer research. I’m so appreciative of these events now, especially those that are in someway involved with raising awareness and funds for blood cancer research.

In the past few months, I’ve had a few friends and family who have let me know about walks, runs, or bike rides that they are participating in and I’d like to share their donation links with everyone who reads my blog in the hopes that some of you might consider donating to their causes. I have a connection in some way or another with all of these rides/walks/runs as you’ll see below. Right now, considering a donation to one of these causes is probably the best way you can help me out, because my biggest hope for the future is that researchers/doctors can find, at least, better treatments for blood cancers, if not a cure.

First, many of you know that I have been volunteering at the Seal Rescue Clinic at Mystic Aquarium for a little under a year. Unfortunately, I’ve had to hold off on volunteering this winter as I am immuno-compromised and diseases between seals and humans (believe it or not) are communicable. Although we wear protective gear in the clinic, my oncologist didn’t like the idea of me coming into contact with wild animals that can carry things like seal pox (kind of like small pox) and I didn’t want to risk transferring anything I might be carrying to the seals. Nevermind the fact that I don’t think I could endure the physical part of the job right now.

The director of stranding and rehabilitation at the aquarium, Janelle Schuh, is participating in Team in Training for the Leukemia and Lymphoma Society. She is training now for the America’s Most Beautiful Bike Ride in Lake Tahoe, CA, a 100 mile bike ride, for her Uncle Dan. She’s kept me in the loop about her training and I’ve been sending her updates about my treatments, etc. Here’s the link to her donation page: http://pages.teamintraining.org/ct/ambbr13/jschuh1.

Shortly after starting the blog, a friend of mine from high school, Kelly Rieder, commented on this blog several times. She reached out to me through Facebook and explained that she is also participating in Team in Training to raise money for the Leukemia and Lymphoma Society by running in the Nike 1/2 marathon. She asked if she could run in my honor, and flattered, I said of course!! She is a rockstar fundraiser and has already exceeded her goal, but please consider contributing to her fund at: http://pages.teamintraining.org/nj/nikewhlf13/krieder.

Finally, shortly after I was diagnosed, a friend of mine, Katelyn Germano, posted on Facebook that her 12 year old niece, Alexah, was diagnosed with non-Hodgkin’s lymphoma as well. This disease is tough enough for me – no child should have to endure it, but Alexah is putting up an awesome fight. Katelyn is walking in the 2013 Relay for Life of Bridgewater State University for the American Cancer Society on April 5th and she’s walking for Alexah and me. Here’s the link to her donation page: http://main.acsevents.org/site/TR?fr_id=48640&pg=personal&px=31208136.

I don’t usually like soliciting people for funds, but these are all great charities that support cancer research and are associated with people from all different parts of my life. I hope you consider donating to one of these events or perhaps either the Leukemia and Lymphoma Society or the American Cancer Society in the future. A day when blood cancers are preventable or are all curable for people of all ages will be a great day and both of these organizations support research efforts that I believe will make that a reality.

Choices

Last night, I had a bout of complain-itis.

I whined to Jeff that I am officially sick and tired of being sick and tired. I’m tired of having excessively dry skin. I’m tired of my digestive tract being in a constant state of turmoil. I’m tired of being so physically exhausted that it takes me two hours to run to the post office and back. I had to shave my head again because the hair that remained is growing in as some sort of fuzzy down feather concoction while the hair that fell out isn’t coming back in yet. I decided to buzz it down to avoid looking like a fuzzy bowling ball with bald spots.

Plus, my next chemo treatment is coming up in about ten days, and I’m really dreading it. I should be looking forward to it, because it’s the last scheduled treatment. I’m dreading the nausea and vomiting and generally horrible feeling that comes for a week after treatment. My body hates these treatments so much now that I actually get anticipation sickness – feelings of nausea and the metallic taste in my mouth – days beforehand. This is common among chemo patients as, apparently, the memory center of brain triggers these symptoms in reaction to the anticipation you have about an upcoming treatment. Joy of joys! Not only do I have to deal with the nausea and metallic taste due to the actual treatment, I also get to feel sick a few days ahead of time, too.

Jeff’s response when I complain about chemo? “Go for the treatment and get better or don’t go for treatment and don’t get better, so really there’s no choice.”

This response makes me think about the choices you have as a cancer patient. When I talk to people about my cancer diagnosis and treatment, it is not uncommon that they respond with, “You’re so brave to go through that” or “I don’t think I could handle chemotherapy” or something along those lines. A lot of people think they couldn’t deal with the treatment and wouldn’t be able to go through with it.

The truth is, they would be able to do it and are braver than they think. In fact, I honestly cannot think of anyone in my life who wouldn’t immediately choose to start chemotherapy as soon as possible if they were in my position a few months ago. Not one. There really isn’t a choice to make in that situation at all.

That said, there is some latitude as far as the type of treatment that you decide to pursue. If you’re like me and completely trust your oncologist, you will go through with whatever combination of chemotherapy and radiation that they think is appropriate. Time was really not on my side – my tumor was growing so quickly that I really didn’t have the option of getting a second opinion, not that I wanted to. Other people opt to seek out second opinions and perhaps land on a different type of chemo that they feel will be better for them and their lifestyle. Some seek out a combination of chemotherapy/radiation and holistic treatments, like meditation, massage therapy, acupuncture, and herbal supplements. Others still believe that chemotherapy and radiation are poisons that shouldn’t be used to treat cancer and instead decide to only pursue holistic/naturopathic treatments. (By the way, before my own cancer diagnosis, the biologist in me used to think these people were just plain nutty. Now, I think every patient needs to do what’s right for them and will get them through each day. To each their own. How very zen master!)

Outside of how you decide to pursue your treatment, the only real choice you have as a cancer patient is about the attitude you have towards your treatment and the disease. I chose to be proactive and positive about 10 minutes after learning I had a tumor in my chest. In my mind, there wasn’t really any other option. What good was it going to do me to wallow in self pity and to pull the “woe is me” routine? Absolutely none. I have nothing to gain by being a sad sack and everything to gain by being my own best advocate in my treatment and being confident from the start that I am going to beat cancer.

Along with that positive attitude comes using comedy as a coping mechanism. Jeff and I do this to deal with pretty much every situation in our lives, good and bad, and my cancer diagnosis is no different. I know this doesn’t work for everyone, and in fact, there has been more than one occasion in which our cancer jokes have been a little off-putting for those around us. Oddly, some people don’t think it’s funny when I say something like, “What? It’s not like I have cancer or anything….oh wait” or Jeff says, “You know what I just realized? Pitbull looks like a 30 year old woman with cancer”. (Actually, I didn’t think that one was particularly funny. I also didn’t like, at first, that he called me Little Stevie when I wore a head scarf for the first time. I think I’m too sensitive about my bald head.) It’s an acquired taste, and I know that. But, that doesn’t stop us from making jokes because it makes us feel better and I honestly think that, ultimately, it does make most people comfortable around me.

When I was diagnosed, I was so set on positivity in my life that I instituted a no crying and negativity rule for those around me. I told my parents and Jeff that anyone could visit or call me, but they couldn’t cry and they couldn’t be negative about my diagnosis and treatment. I didn’t want to hear it – period. I know what all the possibilities are surrounding cancer – bad side effects from chemo/radiation, time away from work and doing things I enjoy, the possibility that my treatments wouldn’t work, and ultimately, I could die from this. I didn’t need to be reminded of any of those things. That said, I also can’t tell people how to feel about my diagnosis and what I’m going through. If they want to be sad about the fact that I was diagnosed with cancer, that’s fine. They just don’t need to bring that attitude in my house. For all intents and purposes, I am the Dikembe Motumbo of cancer.

All of that said, there are times, like last night, when I am frustrated or negative thoughts begin to creep in. This often happens when I’m reading other patients’ blogs or I hear stories about cancer patients that don’t have the best ending. I would be lying if I said I never once wondered, “What if I am in the 10-15% of diffuse large B cell patients of my age group that isn’t cured?” or “What if I’m one of the 10% who has a recurrence?” Fortunately, I’m able to just mentally acknowledge those thoughts and then focus on the positive. A few deep breaths usually help, too.

As I’ve said before, it’s easier for me to feel this way because my prognosis is very good and this is the first time (and hopefully last) I’ve been diagnosed with cancer. It is obviously not nearly as easy when you’ve had a recurrence or a diagnosis of a completely different type of cancer after being in remission for several years. Last night, in the middle of my complain-itis, I watched the season premiere of World of Jenks on MTV. This season includes the story of Kaylin, a woman in her 20’s who was originally diagnosed with Ewing’s sarcoma, went into remission, and then was diagnosed with thyroid cancer, for which she underwent an intense surgery. Unfortunately, she was recently diagnosed with a recurrence of Ewing’s sarcoma. She writes a really great blog called Cancer is Hilarious that chronicles all of this. It is interesting to read about how another patient who is close to my age is going through her treatment for the third time, but mostly, her story reminds me that I’m lucky in that my prognosis is very good and my treatment has been relatively complication free so far. This certainly put things into perspective.