My Livestrong Story...by Lisa
I became a cancer survivor in July 2004 when I was diagnosed with Hodgkin's Lymphoma.
Life was going along beautifully in Spring 2004. I started a cool new job, was dating a wonderful guy (Eric), completed my first adventure race, and had my ducks in a row to purchase a condo. In April, Eric and I did an amazing four-day ski traverse over breath-taking glaciated terrain in our backyard of Alaska. We carried quite heavy packs for this trip, and just after the trip, I noticed a small lump just above my collar bone. I thought it was odd and kept an eye on it over the next month. As far as anything else "unusual," I had very little appetite even though I was extremely active (mom suggested that it was because I was in love!), I had been bruising easily for the previous ~6 months, and I had a couple of more nights of waking up sweaty than usual.
When the lump grew bigger over the month, I went to see a doctor, who referred me to a surgeon. The first surgeon I saw was ~overly personable and said that it was a swollen lymph node, but that young peoples' lymph nodes swell up all the time. But, to be cautious, she ordered a CT scan (with contrast). I think I had the scan the next day…I remember drinking the nasty barium sulfate "shake," thinking that if this is as bad as it gets, I'll be doing good. The CT scan noted a "paucity of fat" in the region of my swollen node, but overall was clean. I asked the surgeon what the bumps were then, and she said, "It's nothing," but that I should come to see her in a few weeks if they hadn't improved. It just didn't sit right with me that I could feel something, and she could feel something, and the referring doctor could feel something, but I was told it was nothing. Later I learned that CT scans are about 85% accurate and that the radiologist who read the scan retired soon after!
I decided that I would get a second opinion, but I kind of got caught up in life and beautiful Alaskan summer. I had also gone to an acupuncturist who had a very worried look on his face about my lymph node, and when asked "what is it?" replied that it was a muscle. So, of course I was glad to hear it was just a weird muscle. (It's amazing what we can kid ourselves into believing.) My dad asked me about my node every single conversation on the phone from Wisconsin and kept insisting and insisting that I see a second opinion. He really didn't buy the "muscle" hypothesis.
So, finally one month after the CT scan, I went to see the second surgeon. After asking my history, symptoms, etc., he suggested that we proceed with an excisional biopsy of my right supra-clavicular lymph node. That's a lot of anat-phys right there. He said that lymph nodes can swell up for all kinds of reasons-fungus, bacteria, all sorts of things, but since the node had increased in size since my first CT scan (you could no longer tell I had a collar bone on my right side the nodes were so swollen), we had to rule out lymphoma. I had the biopsy the next week and was to get the results on the 5th of July. I had gone to the appointments thus far on my own, but Eric asked if I'd like him to come with me. I said, "No, I don't want to waste your time. I'm going to get good news." But, he insisted that it wasn't a bother, and since my appointment was around the lunch hour, I agreed that we could make it a lunch date.
"The results were not as favorable as we had hoped, the results show Hodgkin's lymphoma." We sat in the room stunned as the surgeon gave the results. He said he was referring me to an excellent oncologist. I said, "What's an oncologist?" Literally, I had only heard the word on TV on drug commercials. The first available appointment was eight days later…and they were an eternal eight days with what seemed like new lymph nodes popping out all the time. In addition, I had to close on my condo between these appointments! I didn't know how advanced the cancer was, if I'd be able to work, how long whatever treatments I had to undergo would take. It was crazy! It was hard to follow through on the condo, but mom really, really encouraged me, once almost yelling, "You will spend many happy years in that condo! We will help you if need be!" Had it not been for her, I wouldn't have had the courage to go through with it. Thanks, mom!
Finally Eric and I met with my (chemo) oncologist, and after talking with her about all the upcoming tests I would need during the staging process, mom booked a flight up. It has always seemed unfortunate that during the one appointment that I had the most time with my oncologist, everything was a guess-that I might need chemotherapy, and if I did what I might expect, etc. I found out that I would have to have a bone marrow biopsy, a procedure as awful as it sounds and one that I am in the midst of figuring out WHY they don't do under general anesthesia. After this and other staging tests, I was pronounced to be IIa, as from the supraclavicular node, the cancer had spread into my neck and mediastinal nodes (under the breast bone). I'd start with 4 months of chemo, and if scans were clean I could stop, otherwise I'd have two more months of chemo. Either way I would have 4 weeks of radiation after a brief rest from the chemo. I had my Groshong catheter placed and first chemo within a week of my oncology appointment.
My chemo regimen went like this: I had chemo every other Friday for four months. Infusions were 3-4 hours during which time I received anti-nausea pre-meds and then four different drugs. There were two cool women (breast cancer butt-kickers) who were on the same cycle as I was, and we "enjoyed" sharing our time all hooked up to our machines together. The Adriamycin drip looked like red like kool-aid, and that one was always tough for me…somehow the clear-colored ones seemed easier. Anyway, I eventually got to go home in my drugged stupor where I slept a whole lot and experienced various degrees of nausea and vomiting through the weekend. By sometime Monday I started coming around, and by Tuesdays I could generally bike to work and go for a light jog after a nap and work. The exercising may sound crazy, but after trial and error, I realized that it was about the only thing that helped the nasty constipation side-effect, and so I felt a zillion times better by Tuesday nights. And then I'd just feel better and better throughout the rest of the two week cycle until BAM! chemo time again.
Several things really helped me to get through the chemo. Since I'm normally an active person, it really helped to still do the things I usually do, even if I did much less of them. Eric and I really made the most of non-chemo weekends, going camping, hiking, telemark skiing, you name it. In fact, I can remember all ~8 non-chemo weekends during that time, which is kind of cool because how many times do we remember what we did every other weekend for a period of time? I also worked with an amazing woman who does guided imagery work. She helped me to visualize my immune system as very healthy and strong, to picture being at an infusion and not feeling nauseous, to see the chemo as substances merely augmenting my already healthy immune system. These types of positive thoughts, the meditation CD that she recommended, and other techniques really filled in where Western medicine (which was very effective for me!) focuses on making the body well, but doesn't take time for the mind-body connection. Another thing that "helped" give me a boost was the fact that I didn't actually go bald. I probably lost ~1/3 of my hair, it thinned drastically, but somehow that helped me keep a fighting spirit and to feel like I was beating the odds. It felt kind of good when people were shocked to realize that I was undergoing treatments.
Radiation was much worse than I thought it'd be! Everyone said that once I made it through chemo, rads would be a cake walk. Of course it was nice not to feel the nausea, but the daily reminder of being sick, of going to treatments, of driving across town…all of these things combined with the darkness of Alaska in December really wore on me. I remember trying to make the technicians laugh, to make it all feel lighter, but plain and simple-it was difficult. And, just as I can't imagine having had six months of chemo instead of my four, I really empathize with folks who have 6 weeks of rads when I had four. My armpits were completely blistered and painfully skinless by the end of it all. I have no idea what I'd have done if I'd had to have had two more weeks. Anyway, I finished rads on December 27th and got to start a brand spanking new year soon after with a celebratory (albeit fatigue-ridden) trip to Hawaii.
The emotional junk of this experience certainly bore its head after the fact. I truly do not think that a person can deal with many emotions while going through the treatments. This is why one of my goals is to somehow implement an adult survivorship program in my community. On my last day of rads I was handed a book called, "Life after cancer," that listed websites for various topics, including how to do my taxes with all the medical expenses, etc. As many people have said before me, when you're going through the treatments and you know they're working, you're actively doing something. Being finished with the treatments and getting scanned every 3 months to check to see that you're still in remission is truly a challenging position to be in. Particularly since the moment you finish treatments the people who have been supporting you assume that you're cancer-free so you're more or less fine. I initially spent a good bit of energy fearing recurrence because it would mean that I'd have to go to Seattle for a stem cell transplant. And certainly that little voice in my head still fears this, but a friend of mine who just reached her 5-year cure mark for breast cancer suggested that instead of fearing the transplant, I could realize that it's wonderful to have that as an option if I were to ever need it. Her simple comment has made such a difference in my outlook on this-thanks, Anne!
Despite all the hard stuff, I feel incredibly lucky on many fronts. One is that at this point, I am basically back to my normal physical self. But, I feel as if I am merely beginning to realize my ~soul's potential in this life. Having hit rock bottom well after treatments were completed, I realized that the coping skills I developed early in life simply didn't cut it. Therefore, I have to delve deep and find better ways to manage my emotions and relations with others. I also feel indebted to the "Team in Training" program of the Leukemia and Lymphoma Society, as participants in this program have to raise about $4,000 per race. I really hate asking people for money, so the amount they raise, and the good that is done with those dollars is just incredible to me. I also feel lucky to have such talented and personable doctors during my experience. I keep feeling like I should hold back my physical ambitions because otherwise I might push myself too hard and the cancer will come back…but they insist that I am like any other person and I should not baby myself.
I seem to continue to find "benefits" to having had this experience, so I will continue! It has been incredible sharing this experience with my family, my sweetie Eric, and Eric's family, as well as with many friends. I can't imagine being a parent and having my child go through this, and I can't imagine being a 28-year old strapping young man whose girlfriend of 6 months was just diagnosed with cancer. All I know for sure is my experience. I feel like from this experience, I have an easier time talking with people who are having a hard time, whether it's a death, illness, or whatever. I have confidence that just by me trying to say the right thing, even if it comes out all wrong, that the person will likely know that I am trying to help. I certainly recognized this with the support I received…it seemed easier for people who have lived with chronic illness, or have had a hip replaced, or have had cancer themselves, or seen a loved one die from it, to reach out. Once you have had these hard times, you are truly a stronger and changed person.
Notable ways in which I've changed include being even more of an introvert than I was before, valuing having a few really good friends and not wasting my energy on the masses (i.e., casual friends), and no longer being a work-a-holic. All of these changes are helping me to become a more grounded, centered person. Right after finishing treatments, I felt such a poignant sense of living every moment exactly as I wanted to...this is still in me, but unfortunately I feel it has gotten buried by normal life, and I want to keep my newly realized priorities high! I don't like it when I find myself sweating the little stuff, and so I often have to recheck my thoughts.
My advice to others is to definitely get something checked out if it don't seem right. Listen to the little voices in your head, even if you have been known as a "health nut" since high school and only eat organically and were a vegetarian for seven years. Push for the earliest appointments. Get on waiting lists in case there's a cancellation. Spend the money on your health, there is nothing more important than your health.
It also really helped me to have regular contact with other Hodgkin's survivors on a web support group that Eric found for me. There's something about people who are dealing with your ~exact diagnosis that just can't be beat for helping you to feel that someone understands you. And finally, I worked 30 hours per week during all of the treatments, and I think that 20 hrs/wk is the most I "should" have worked. Like many, I wanted to keep working enough to keep my insurance benefits maximized and to feel like I had a purpose in life, but really, I could have backed off a bit more and been OK financially. I think that working less would have really helped me, though I know that I wanted to just push through everything and not feel like my life was terribly interrupted by the whole ordeal.
As for survivor guilt, I don't feel guilty that I survived this when others haven't. All of my "cancer buddies" returned for their treatments, and for this I feel fortunate. Any survivor guilt that I have is more along the lines of the fact that I am now able to do all the things I could before and then some. Whereas a good friend of mine who kicked testicular cancer's butt had a stroke in conjunction with the cancer, and so he is still rehabilitating his affected side. Also, Eric's sister Laura who started this phenomenal Lyme site is ever-so bravely managing the continued side-effects from the intensive antibiotic and other treatments she's gone through and is going through...and she has been doing this for ~12 years. So, part of me recognizes how incredibly lucky my 6 months of treatment and ~6 months of physical recovery was, and I wish that anyone who has to go through something similar could return to all the activities they love, as well. Another huge part of it is recovering mentally/emotionally and learning whatever lessons these experiences teach us. We are all so incredibly much more than our physical bodies...I would not be surprised if that is a lesson presented to me again one day.
I also feel much more sensitive, in general. I'm sensitive to people who drain my energy ("energy vampires" as Judith Orloff calls them). And I'm lifted even higher by someone's positive spirits and excitement for life. I would also say that I am much more sensitive to the hurts I see in the world. It literally pains my heart to see homeless people at the stoplights, someone I can tell is experiencing domestic abuse, and people who really struggle to make ends meet. I maybe would have become more sensitive even without cancer, but I think there's a correlation.
What does survivorship mean to me? The main thing that comes to my mind as far as survivorship is the quote that Laura passed along to me during my treatments:
"The most beautiful of stones have been tossed by the wind, washed by the waves, and polished to brilliance by life's strongest storms."
I expect that I will experience additional strong storms in my lifetime, and I hope that by keeping this quote in mind, it will only make me a stronger and more centered person.
Being a cancer survivor is also a huge reminder that we only go around once in this lifetime-just once. It has just given me even more fire to do things NOW, as I don't know what's around the corner, I don't know if I'll be on the next flight to Seattle after my next check-up scan. I only have this time right now. Granted I need to save for and look toward the future (and not live entirely for the moment!), but I want to milk the present moment for all it's worth.
My name is Lisa , I'm 31 years old and a 1.5 year Hodgkin's Lymphoma survivor.
Live Strong. |
