Pascuas 2013

Had a rough night last night. Woke up at least four times having "power surges" that only lasted 10 minutes or so each. I am much more aware of my stomach than I was at this point in round one. Perhaps that's because of the adjustment in my anti-nausea meds. I'm still eating and drinking just fine, but just burping a bit more than usual. It's a beautiful sunny day once again so that helps a lot. I just finished writing a grant application, and still need to pump out another one today, but I'd rather be asleep or at least not looking at a computer screen. I feel emotionally drained and a bit stressed out but I feel lucky to have mindfulness skills that can keep me focused on the here and now when I need it.

I want to share an experience I had at the cancer center on Friday afternoon that really threw me for a loop. My friend and I were sitting in the lobby waiting for my quick appointment to get a white blood cell-boosting injection, and she stepped out for a moment to make a phone call. The woman next to me asked if my friend was my daughter. Now, I should clarify that my friend and I are only months apart in age, that she is in her third trimester of pregnancy and just beautiful and full of life energy, and I am getting used to having no hair on my head. After wiping some tears out of my eyes, I told the woman that we're the same age, adding the comment that "cancer will do that to you." I was really in shock that she perceived me to be at least 12 years older than my friend. She didn't apologize or say anything really, and then mentioned that she was there with her daughter (who looked pretty close to my age), and that her husband also has cancer. I can still picture the glazed over look in her eyes as she shared that with me. She said "when it rains, it pours." I talked with her daughter until we got called in for the shot appointment, and it was actually nice to connect with another person my age who is dealing with cancer treatment, even if it's a totally different kind of cancer. She had just finished her last chemo treatment for endometrial adenocarcinoma and said that she'd be back in 3 months to see if it had gone into remission. So now that I've had some time to process this interaction it has become clear that the woman who started the conversation was really just trying to connect, and that she didn't necessarily perceive me to be old enough to be my best friend's mother. There's still some residual doubt in my mind about how different I look without hair, but in the big picture I know how old I am and so what if I look different than I feel?

I don't know quite how to put into words how this is all affecting me, but the process of writing this blog certainly helps. It is becoming clear that there are major differences in the experience of the person with cancer and that of their caregivers. There is an isolation and helplessness that happens for people in both roles, and although I don't think it's particularly useful to rate the difficultly of each role, I wonder whether it's actually harder for the caregivers. I at least know exactly what it feels like to have cancer and to be treated for it. I can take simple actions like being aware of my breath to come into my experience. I can avoid seeing myself in mirrors or I can cover up my balding head. I can control a certain amount of what happens to me. I can make decisions about my medical, nutrition, and physical activities. I also can't control a ton of things, and the struggle is to figure out which things are worth trying to control. It is complicated to make space for everyone to react to new information the way they need to, but I think this is a process to negotiate with the other people involved. I'm learning so much about what is important to me, and how I want to live my life in even the shortest of moments. My friend brought me a great book called "Being well, even when you're sick." I've only read one chapter so far, but it's helped me a lot. Guess I better get back to grant writing, thanks for reading!

Round Two

I'm sitting in the cancer center getting my second chemo treatment. Seems like my hair loss has slowed down, and I still have some hair left but not much. I expect to lose the rest of it within two weeks or so. I lucked out an got a private room today, which may not be the case in the future. So I'm pretty comfortable and may even take a nap. I've been given benadryl to help prevent nausea, and I'm so sensitive that even one benadryl makes me sleepy. I hope to be able to do some work while I'm here, but we'll just have to see. It sure is nice to be able to stop and relax a bit. I'm still pretty busy with school and work so I don't get much down time except when I'm sleeping at night.

Later...
This round went much faster. It was an eight hour visit compared to the thirteen hour visit at the hospital on the first round. I still didn't have any side effects or reactions during the infusions. The drugs were administered in a totally different order and with different methods, too. All the pre-meds (anti-nausea, tylenol, benadryl) were given (by IV drip) at the very beginning, then the Vincristine and Adriamycin (a.k.a. fruit punch) were manually "pushed" by the nurse via syringe into my port. After that, the Cytoxin was a similar 30 min drip, followed by the Rituxan. They apparently mix up their Rituxan differently than the hospital did, using a bit more solution. They administer it at a rate based on volume, which is then ramped up over time. So I started at a rate of 40mL/hr and had increased up to 300mL/hr by the time it was done. The Rituxan took about 3.5 hours just by itself. Good news is that because I have had another reaction-free Rituxan infusion, I am now pre-approved for a "rapid infusion" next round. This means they'll really crank it up so that I can get the same dose in 90 minutes. So I got that going for me, which is nice. Perhaps the next round will only take 5 hours? It is currently scheduled for April 18, and I'm getting a PET scan on April 8, with results on April 11.

So I guess it's not totally accurate to say that I haven't had any side effects at all of treatment. The hair loss is almost complete, the prednisone wires me when I'm taking it, I've had some mild early-morning headaches that go away as soon as I get up, and I've also been having minor hot flashes in the early-morning, too. The oncologist referred to them yesterday as "power surges" most likely related to my ovaries and the Lupron Depot shots I'm getting once a month. It's also possible that the chemo meds are affecting my ovaries, too. I'm feeling a little sad for my ovaries this morning, and just trying to hold onto the hope that they'll be back in working order once we're through this particular situation.

This morning I'm preparing for my entrance interview into the BFA Printmaking emphasis at WMU. I've prepared my portfolio, required forms, and an artist's statement. Really looking forward to securing the plan to keep going with school, and appreciating the support I've received by students and professors at school during this process. Later on, I'll get my monthly Lupron shot and "roundly" Neulasta injection. But mostly, I'm spending time with a childhood friend who is here to visit. Really looking forward to some quality time with her.

Going... going...

...not gone yet! I've decided to put off shaving my head, since I've lost at least half of my hair at this point and I'll have plenty of time to have short hair when it starts growing back after treatment. I read a woman's blog where she didn't shave her head so that she could see how much hair stayed put and she coined the term "skullet." Her approach appeals to me right now, since most of the people who shave their heads seem to do it to claim a sense of control over the situation. I'm not feeling particularly out of control, and there's something oddly comforting about having some evidence that the chemo meds are actually doing something inside my body. Up until this point, it's all felt very surreal and abstract. So in moments where I start thinking ahead about whether the treatment is really going to "cure" my lymphoma, thinking about whether the treatment will cause long term damage to my heart or will cause some other cancer to develop down the line, I can stop and reflect on the fact that right now I'm fighting THIS cancer. I can accept that this is happening now, and that there's not much point in thinking about what's coming next besides a visualizing of being alive, healthy and happy. I've been doing a lot of deep exhalation and letting go. My photographic collaborator and I are doing our best to capture the process, and at some point soon I'll be willing and able to share some of those images via this site. I imagine that all or most of my hair will be off my head in a week or so, based on the rate of shedding so far. The sun is shining on the fresh snow outside right now, so I am thankful for the light and the beautiful shadows that are cast. Gotta get back to work!

Falling Snow... and Hair

Wednesday was the first day of spring, and the snow was blowing sideways outside the window as I wrote this. On Sunday, the first sign of my hair falling out appeared. As I was drying my hair, I noticed that a few strands came out at a time as I ran my hands through. That night, I dreamt that pieces of my actual scalp were coming off with large clumps of hair- way more gross than reality. On Monday, even more hair came out in the shower and when I gently used my brush. It's coming out slower than I thought it would, but it's clearly happening. And right on time- the doctor said it would take about two weeks after the first treatment for hair to start falling. Yesterday was the two week deadline. So now I'm faced with a decision. How long do I wait before I cut it off? I want to capture a bit of the thinning process through my photo documentation project, but I also want to have enough hair left to have a gratifying "shaving my head" experience. It will be interesting to see whether the rate of shedding increases or if it stays pretty constant. It's definitely more of a psychological challenge than a physical one. It doesn't hurt when my hair comes out, although I've had a very mild headache recently so maybe that's related. And there might be a little bit of tingling on my scalp now that I think about it. The challenge is more about staying calm amidst the anticipation of being looked at or treated differently after I have no hair at all. And wondering whether I'll be able to stay warm enough in this weather without hair on my head. I've got a growing collection of scarves and hats thanks to my supporters, so it should be fine. I wonder if my eyelashes and eyebrows will fall off, too? No sign of that so far. Other body hair may be falling off, too, and I'm happy to share details of that offline if you're interested. I've promised one of the nurses at the cancer center that I'll tell her all the details. She says people don't often share about other types of hair that fall off in the process, and I think it's interesting what does and does not get talked about.

At the gym yesterday, I noticed two anchormen on a sports show who were bald or balding and who were clearly shaving the rest of their heads. It looked so normal and acceptable. I don't have many mental images of females with little or no hair and I'm certainly curious about what I'll look like. Didn't Brittney Spears have a crisis and shave her head?  Susan Powter comes to mind, as well as Sinead O'Connor and Natalie Portman. I am grateful to have a friend in "real life" who is totally beautiful with very little hair on her head. All this gets me thinking about vanity and appearance and identity, and reminds me that I'm grateful to have not spent a lot of time worrying about hair and makeup during my life so far. For now, my hair is up in a ponytail and I will post again soon. Thanks for reading!

Nobody's Perfect

This first round of chemo is going remarkably well. I did start feeling a little lower energy last weekend, which may have been related to the final dose of Prednisone on Saturday wearing off. I also think that starting back up with my school schedule took more of my energy, and that several resolutions at work allowed me to relax a bit more than I had been in that realm of my life. I also started my moon cycle this week, which normally affects my energy level and digestion just a little each month. I was really happy to see that resume since I wasn't sure it would arrive at at all due to the Lupron injections I'm getting (to give my remaining eggs a chance to survive better) and the chemo meds themselves. I'm still getting a full night's sleep, eating great food from our meal train supporters (thank you!), and taking a walk or going to lap swim every day. I had a check-up this Wednesday with the oncologist and they did a blood analysis to make sure that my levels of white and red blood cells, platelets, and enzymes are where they should be after the first round of R-CHOP. Everything looks good, so I'll be able to get my next infusion at the cancer center instead of as an inpatient in the hospital. This means it will take less time and will cost less, so I am down with that. My next infusion will be on March 28. We also found out that I'll get another PET scan after the second round to confirm that the treatment is working. That is scheduled for April 8, and I'll get the results the following Thursday, April 11. It's nice to know that step is involved so that we're not moving ahead with an ineffective treatment. I asked what would happen if my scan shows no sign of cancer at that point, and was told that we would continue with all six rounds anyways. Want to read more about that, since I've seen a bit of information about the over treatment of cancer and I'd prefer to have as little exposure to unnecessary, highly toxic medications as possible during this process. But I also like the idea of curing this cancer and having it never come back.

In general, I've been having a positive experience with most of the medical and administrative staff at the hospital and cancer center. But every once in a while someone has rubbed me the wrong way. For example, the PA in my latest appointment, who I was meeting for the first time, referred to the scar on my neck as a "battle wound" as she was doing her exam. Not helpful. She then also exclaimed "Oh, WOW!" right as she looked into the back of my throat with a lighted scope. This was alarming to me because my tonsils are one of the places that lit up in my original PET scan. I don't want any medical person to be surprised when they look at my tonsils. It turns out that she was surprised that she had such a clear view of my tonsils- she's used to people's tongues getting in the way or something, but I didn't know that at the time. I got pretty upset with her and she apologized but I think it's an indication that many PAs, nurses, etc. can't completely understand what it's like to be a cancer patient if they haven't been through it themselves. She was also generally patronizing and told us things that we already knew without checking to see if we already knew them, which felt to me like a waste of everyone's time. Thankfully, I LOVE my oncologist and it's her medical opinions, attitudes and methods that matter most to me in my treatment. I figure I have to be patient with people, but I also may need to grow a thicker skin when it comes to being vulnerable to passing comments by slightly insensitive care providers. There was a nurse at the hospital last week who casually referred to the chemo drugs as "poison" as she was giving us an overview during the wait. This brought me to tears at the time, since I'd been trying hard to visualize positive things about the treatment. She, too, apologized, and I learned later that my dad also said something to her in the hallway. I also remember that she said something about contemplating cutting her own hair because it was such a nuisance, and I thought that was a little unnecessary at the time. I want to let go of these stories, and at the same time they are a pattern I'm noticing in my experience. The point is- nobody is perfect and this is a stressful situation for many parties involved. I think it also indicates the narrow definition of "healing" within the western medical model. Our health care system basically says that if you are free of disease, then you are healthy. Other traditions of "healing" include mental/emotional/spiritual health of the patient and nurture overall wellness in addition to addressing biological disturbances. Each systems has its strengths and weaknesses and I'm glad that I can learn to use the best of both and leave the rest.

Responsibilities

I feel remarkably good physically. I am so grateful and relieved about that. The prednisone that I'm taking definitely keeps me full of energy during the day and I'm able to wind down at the end of the night, too. I'm trying to get my priorities straight. I'm told my first priority has to be my health right now, and I believe that. I'm doing a good job so far of drinking at least the daily required 2 quarts of water, getting a good night's sleep, taking a daily walk, and eating small but frequent nutritious meals. There are still lots of other responsibilities tugging at me including financial and program management at work, outstanding school assignments, and getting our financial situation at home straightened out in the midst of lots of new medical bills. Those things are what I'm used to being responsible for, and it feels good to get things done at work, school, and at home. But it gets overwhelming when there's not enough time to do what needs to be done in each of those realms. I often feel like I'm disappointing someone (including myself) if I can't get something done in a timely matter or if I'm late for something. I let go of a few other obligations right after my diagnosis, by resigning from a board of directors and withdrawing a pending job application. I've also not been able to go to my drum ensemble rehearsals because I didn't have full range of motion in my right arm after the port was installed. Hopefully I can get back into that soon because it feeds my soul to play music with my friends. But the rehearsal schedule was pretty demanding and I'll have weekly medical appointments for a while taking up extra time.

I  had an interesting dream on Tuesday night, where I was going on a day hike into a jungle. I was with one of my drummer friends and an acquaintance from the sweat lodge ceremony Mark and I attend. All of my belongings were in the car at the trailhead, and we didn't have much with us on the hike. We did, however, have a horse with us. As we walked along we came to a wide canyon, filled with mist, that was clearly quite deep with a large river running at its base. There was a ramp on our side of the canyon so the drummer and I got on the horse and took a running leap over the gap, landing with no problem. The horse then took off into the jungle at our remaining hiking partner was left on the other side. He decided to take a running leap but faltered at the last moment. We watched him gracefully swan dive into the divide, and he made it all the way to our side, just slightly lower down the bluff. He found a vine and started climbing his way up to where we were. While he was doing that, I started making a mental inventory of our resources. I knew my cell phone was in the car, that we had no map. I asked my companions if they had any cash on them (as if that would have come in handy in the jungle!), and started thinking about edible plants we might encounter in the jungle. Then I woke up. After spending some time writing about this dream and applying it to my current situation, here's what I get from this. I've passed a threshold and I can't go back- starting chemotherapy? I have spiritual practices to support me in this process- music, community, prayer, meditation). I have skills and a plan to surpass this situation- I was a river guide, a high school teacher, I've run a half marathon. I already have everything I need to get through this. I am responsible for my own healing.

The Morning After

Well, I'm relieved that yesterday went very well. I did not have any type of allergic or infusion reaction to any of the chemo drugs, and we got to come home and sleep in our own bed late last night instead of staying overnight in the hospital. It was certainly a long day- arriving at the hospital at 11am and not being discharged until about 11:30pm. Once I got over being a little annoyed about the wait time between arriving and getting started with the treatment, everything went pretty smoothly. I didn't do that on my own- my mom guided me through a visualization of the medications flowing around my body and healing it, in the form of purple light. Purple has turned out to be a powerful color for my meditations ever since I saw the purple port before they installed it. That was extremely helpful in letting go of any fear, anxiety, or anger I'd been feeling about the wait and the upcoming infusions. None of the infusions felt any different than being on a saline IV, even with one of them being the color of fruit punch! The only side effect I experienced during the infusion was, strangely enough, a temporary period of nasal congestion and sneezing during the Rituxan infusion. Apparently this happens to about 10% of people who receive Rituxan. A dose of benadryl made it manageable at the time and I'm back to normal nose breathing this morning. I did wake up in the middle of the night drenched in sweat, but I don't have a fever this morning so I'm not sure if that's something that will happen every night. I've been warned that the 100mg of Prednisone that I'll take for 5 days after each infusion might keep me awake at night, so I'm going to try and head that off with exercise and staying busy with work and school as much as I can tolerate. I'm already feeling a bit sleep-deprived after getting up super early yesterday and only getting 6 hours or so of sleep last night. It will also help to drink at least 2 quarts of water per day to flush out the residual meds and dead cancer cells (good riddance!) so I'm staying focused on that, too.

We will learn more about how my body responds to these medications over the next two weeks. There is potential for nausea and fatigue, and a handful of other weird and unusual things that I don't plan to experience. They pumped me full of 3 different anti-nausea drugs between the Rituxan and other infusions yesterday that will wear off at different times and then I have prescription strength anti-nausea pills to take at home to ward it off too. Everyone says that it's important to prevent the nausea from happening in the first place rather than waiting for it to happen and responding too late. I feel a little conflicted about that, because if I'm taking something to stop nausea and I wasn't going to be nauseous it feels unnecessary. So for now, I'll do what everyone says because there's a chance that the anti-nausea meds may not completely be able to stop nausea anyways.

This morning I don't feel nauseous but I do feel tired and a little dense or heavy. I can quite find words to describe the sensation beyond that, but I just imagine that there's a lot going on inside my body right now so it makes sense to me that I'd feel a little off.

Thanks for all of you who are reading this, those who have sent me (and us) their positive energy in so many different ways. Your support is helping me immensely right now and will continue to be a source of hope and gratitude for the rest of my life. My very long and healthy life. May you be well.

Straight to the Heart

I'm sitting up in the hospital bed right now receiving my first infusion of Rituxan. It doesn't feel any different than the saline I was getting through my port leading up to it. We got here around 11am and by 11:30 I was hooked up via my chest port and they'd drawn blood. It turns out that they don't prep the chemo meds until you show up at the hospital, so we then waited until 3:30 for them to actually start administering the treatment. I was a little annoyed that we didn't know that in advance, but oh well. They started me at a rate of 20mL per hour and are increasing the rate every 30 minutes. If I start to have a reaction to the medication, they'll stop and/or slow the rate back down again. I'm hoping they'll be able to crank it all the way up so that I can get out of here faster. I have a private room and it's nice and quiet, but I still would rather be at home playing with our new kittens.

So the plan is to finish up with the Rituxan, and then I'll get shorter infusions of Cyclophosphamide, Hydroxydaunorubicin, and Oncovin (30-60 mins each). The final chemo drug of the series is Prednisone, which I will take as a pill for the next five days. I also will get a shot 48 hours after treatment to boost my neutrophil (white blood cell) count, which will help protect me from infections.

I woke up this morning at 3:45 or so and couldn't get back to sleep so I got up and took care of some little things that were nagging at me. Some work stuff, some getting caught up on personal emails, etc. They gave me some Benadryl so between that and the sleep deprivation I'm pretty tired right now. Still, it's a little hard to get quality sleep when the nurse comes in every half an hour. There's a TV in the room, but I'm so out of the habit of watching cable that the idea of turning it on to pass the time is not very appealing. I can order all the room service I want so we'll definitely be taking advantage of that. I've got books to read, music to listen to, and my laptop so plenty of entertainment if I need it.

My blood panel checked out- they look at kidney/liver function as well as red and white blood cell and platelet counts before each treatment. We also found out that my heart is in good shape- the results of the echocardiogram from last Thursday were forwarded here. The nurse here says that I should feel fine during the infusion today and that if I'm going to have side effects they'll kick in 7-10 days from now.