Port removal tomorrow...

So it's been a while... a very busy semester has come to an end, and we got good news on Friday, Dec 6th when I went in for a checkup with my oncologist. She cleared me to have my central port removed! It's happening tomorrow morning at 8am and I can hardly believe it. We were so relieved after that appointment- I was laughing/crying for a while and still don't feel like I've had enough time to digest the fact that I won't be getting more chemotherapy any time soon. Sounds great to me! It's also been about three days since I have had a hot flash, which could be a sign that my body is getting back closer to normal operations. I caught an end-of-the-semester cold and have lost my voice, but am otherwise feeling strong and healthy. On Thanksgiving I reflected on how much support we've had this year from friends and family... I'm so grateful and convinced that we couldn't have made it through this time alone. Thank you, everyone! I don't think I'll ever be able to truly express what it's meant to me... I feel loved and cared for. I hope to be able to be as helpful to others in the future. It's been snowing like crazy here for a few days... more than we've seen in December the since our first winter in 2009-2010. We shoveled the driveway together this morning and I was aware that I wouldn't have had the strength or stamina to help with something like that just six months ago. I'm also thankful for the talented acupuncturist I've been working with since August, who has almost completely purged the neuropathy I was having in my hands. I hardly notice it at all now, and I imagine that my whole body benefits from that treatment. If only acupuncture was covered by insurance! I may try to petition to be reimbursed since neuropathy is a known side effect of chemotherapy. We have an appointment at U of M later this month to learn more about the next steps towards using our frozen embryos, which is quite exciting and hope-inspiring. My oncologist and acupuncturist both suggest that I wait a while longer before we start that adventure so that my body is recovered enough from treatment to provide us with the best chance of success. We'll see what U of M has to say about that. We don't want to put it off much longer, but we also want it to go well the first time. We're looking forward to a fresh start in 2014, and are hopeful that we won't have another year like 2013 ever again. It is pretty incredible that this whole process could start and end within one calendar year... I was diagnosed on January 23 and given the closest thing I'll get to a clear bill of health on December 6. My white blood cell count is still pretty low, but that's to be expected. When I got my hormone levels checked in October, I was producing less estrogen than my husband does. Hopefully that is going to improve so that I don't have to start hormone replacement therapy. My oncologist feels pretty confident that my period will return because of my age, and my acupuncturist agrees- so I'm keeping the hope alive.

Menopause?

Menopause

Blood tests from 11-4-13 show that my estradiol is 5 and FSH is 55, both indicating that I'm experiencing menopause. LH wasn't conclusive like the other two. What about my thyroid?
Just another victim of nature's plan
shoulda woulda coulda had a baby when I was able
angry that I had to choose between fighting cancer and keeping my eggs in me
Still some hope that the effects are temporary
Skeptical that blood tests can predict my future- Mayo clinic says it could be temporary
Not in menopause until I haven't had a period for one year (March 2014)
hormone replacement therapy?
fertility clinic-aided pregnancy?
bone density decline, weight gain

Need to stop eating so much, need to exercise more
Thank you Armstrong Foundation for enabling me to save 6 embryos!
More water, less sugar

One year later

It's been a little over a year since I first noticed the lump in my neck. I'm still trying to accept that the cancer diagnosis from January was real, so it's taking a while for it to sink in that it might already be gone. I'm trying to cultivate humility from this experience, but it's so tempting to pump up my ego after what I've been through. One of my friends, who is also a cancer survivor, mentioned that she feels like a rock star now. I do feel like a bit of bad-ass for being able to continue going to school and working full-time while going through chemotherapy. But I couldn't have done it without all of the support I received. First and foremost, I am so grateful to have Mark in my life. We grew closer during this time, and he courageously stayed by my side even during the times when I suspect it was harder for him to deal with things than it was for me. I am also so thankful that I had access to the medical staff and resources that provided treatment- thankful for their services and thankful to my family for being willing to provide a financial safety net when I needed it. Mark and I were both overwhelmed with the response we received from our Kalamazoo family- so many meals provided when we needed them most. Another thing I'm grateful for is the work I have the privilege of doing- it kept me focused but also just distracted enough to make meaning of life as I question how much time I have left. My schoolwork was flexible and also gave me a creative outlet when I needed it. Thank you to my professors who were willing to work with me, and even helped me get scholarships and acceptance into the BFA program. The list can go on and on.

Looking back at the last 8 months, I think I was operating on a very basic level- that of survival. Now that I'm in a relatively "safe" medical place, some of the thoughts and emotions I'd put aside to stay focused on survival are starting to surface. The first thing I'm noticing is some anger. I'm not sure what to do with it, but I suppose I just feel mad about the fact that this happened to me. I may even be slightly blaming myself for getting cancer or for having to chose to get chemotherapy. I'd like to be able to let that go- I understand intellectually that it's not helpful to hold onto anger, blame, and guilt. Having slightly numb hands during the night, or even during the day, is a fairly constant reminder that some serious chemicals have been in my body. I appreciate that they tamed the B-cells that were acting up, but I'm also a bit worried about what else they might have done. With school starting again this fall and work staying steady, I feel busier than ever so again that distraction is helping me by not giving me a lot of spare time to ruminate on such things. I will do my best to take time to practice gratitude for now. Thanks for reading. May you be well.

PET #4 Results- great news!

I got my PET scan results earlier than expected, and they showed that the lymph node in question is considerable smaller and less active than it was during my last scan on July 15! In fact, the sugar uptake was almost normal (on a scale of 0-40 where 2 is normal, it came in at 2.1). I will have another scan in 3 months and then my oncologist says I'll be "done." Whew!

PET scan #4 coming up

So I'm due for another PET scan on Tuesday and will get the results on September 11. Hopefully it will show that the lymph node in question is the same size or smaller and less active than it was on July 15th when I had my last scan. I'm feeling physically well, with the exception of some neuropathy that feels a lot like carpal tunnel syndrome that I've been experiencing for about a month now. I started a physical training program sponsored by the Livestrong Foundation at the YMCA and have been doing cardio and weight training twice a week. My hair is growing back all over my body and it is a nice visual reminder that my other cells and systems are healing as well. School starts next week and I also expect to be in limbo at work for a month or so while I wait to find out if I'll be selected for the permanent version of the interim position I've been filling since January. We're spending the weekend cooking food to freeze/dry for meals and snacks later this semester when things are busy... tamales, lasagna, muffins, beef jerky, and fruit leather. It's a nice ritual to take care of ourselves in advance like this. I hope the universe will take care of us in the next couple of weeks. I'll make sure to update when we find out the results of my upcoming scan.

Only time will tell... or a biopsy

So we're all done at MD Anderson, and feeling good about the information and opinions they shared. In short, they agreed with my oncologist's original plan to wait a while and scan again. They said it's not unusual for post-treatment PET scans to still show some abnormal metabolic activity. They also said that as long as the lymph node in question continues to shrink and have reduced sugar uptake (which is what PET scans measure) then there is no evidence to suggest that I still have lymphoma. They said that their approach to my situation would be to wait 8 weeks and scan, and if that wasn't acceptable to us they could do a less invasive biopsy (core needle biopsy) to determine whether there is any evidence of persistent disease. They also emphasized that I should not undergo further chemotherapy or a bone marrow transplant unless there was hard evidence (biopsy) to indicate that there is actually still some cancer left. They are going to re-analyze the tissue that was biopsied by U of M back in January to make sure that I was diagnosed correctly, and they don't expect that anything will show up differently. Still, it will be good to have a double-confirmation that I had the type of cancer that we thought I had in case it's not gone.

Another bit of helpful information that MD Anderson shared was about one of the numbers that shows up on PET scan reports. They use a measure called SUV, which is a scale of 0-40 to indicate the rate of glucose uptake in tissue. Normal muscle tissue will have an average value of 2. Lymphoma typically shows up in the 10-20s. The highest number that's shown up in the lymph node in question was 5, and it's now around 3. So MD Anderson said this was a good thing, especially if that value continues to drop with each PET scan I get.

So instead of spending 5-7 days here getting poked, prodded, scanned, etc. Mark and I went to Galveston Island yesterday and bathed in the Gulf of Mexico. We're going to hang out in Houston today and are flying home later tonight. I'm looking forward to touching base with my oncologist back in Kalamazoo once she's received the info from MD Anderson and hopefully we'll all be on the same page about next steps. I may go to see someone at U of M, but I think I'll wait until August 28th when my pre-existing condition waiting period with Blue Cross/Blue Shield will be over. Right now I'm pretty close to maxing out my current student health insurance (do not EVER buy Student Health Insurance) that has a $100,000 lifetime maximum per condition. I feel more comfortable waiting another 4 weeks since hearing what MD Anderson had to say about my situation.

Houston... we have a problem. Please help!

So I have an appointment at MD Anderson Center in Houston, Texas on Tuesday. Mark and I will fly there on Monday and then we meet with a Diffuse Large B-Cell Lymphoma specialist. They told me to plan to be there for 5-7 days, and I'm not sure exactly what they're going to do. Right now I'm just tying up loose ends at work so I can be gone for a week, and making sure that they have received all necessary medical records before we get there. Big thanks to my brother for having his friend get me a referral so quickly!

I also have a consultation with the bone marrow transplant clinic at U of M on August 16th, but we'll see if I need it after our trip to Houston. I'm feeling great physically, and feeling a little better emotionally/mentally now that a plan is surfacing for the near future. I'll do my best to update periodically with new information.

New information

My oncologist called me today at 4:45pm and said that after reviewing my file over the weekend, she recommends that we don't just wait around to see what happens. So I will meet again with an ENT and the oncologist at U of M, and may pursue a third opinion from another institution. The concern is that the particular genetic mutations that were identified before I started chemo were complex, and since they haven't necessarily responded fully to treatment, my doctor wants to make sure we act proactively rather than reactively. I had just gotten used to the idea of having a break from treatment for 2-3 months, and it sounds like that may not be the case. I at least will have to spend some time in doctors' offices but it sounds like a good idea to get more information and get more experts involved in figuring out the next steps.

PET Scan #3 Results

Went in to get the results of my first post treatment PET scan yesterday. There is still an enlarged lymph node with "abnormal" sugar uptake in the same spot. It is smaller than it was the last time I was scanned, which was after two rounds of R-CHOP. But it's not gone. So the plan is to wait 2-3 months and scan again. During that time, hopefully the remaining cancer cells will try to divide, and finding their DNA jacked up from the R-CHOP, they will self-destruct. I am definitely disappointed and mildly freaked out, but I am grateful that the lymph node was at least smaller and not bigger than before. My oncologist says we're okay as long as the lymph node continues to get smaller. If it starts to grow again, then I will need to get radiation and/or further chemotherapy. During the next few months I will focus on rebuilding my immune system and my physical strength and wellness. Thank you for your support during this first phase of treatment. I've received countless cards, gifts, and meals without any strings attached. I wish I had the time and energy to respond to each offering, but this will have to do for now. Please know that I greatly appreciate knowing that I've got a team of people routing for me! I hope that I can share better news after my next scan.

Independence Day

Twenty three years ago today my grandfather passed away after being diagnosed with lung cancer. I was in middle school and was a little bit aware that he had been sick, but I probably hadn't seen him since Christmas or so. I have strong memories of his memorial service- especially this one visual of his casket coming out of the floor of the funeral chapel. He was only 70 years old, and his wife, my grandmother, lived for another 22 years after he passed.

It has been two weeks since my last chemotherapy treatment and I am getting a PET scan on July 15th to determine whether further treatment is necessary. I will get the results of that scan late in the day on July 19th. It's hard to believe that I'm already almost done with treatment- I don't consider it over until next Thursday, when I would have been going in for another infusion. I am hopeful that my body will come out of "chemopause" soon thereafter and am looking forward to seeing what my new hair will look like. It hasn't been too hard to be bald over the last four months- the community is generally supportive and I get a lot of "you have a nice-shaped head" comments. It helps that I can pass for a radical white girl who may have just shaved her head to rebel against dominant culture standards of beauty. Also, I have been able to continue working full time and don't look otherwise ill. I decided not to do any non-home work today and of course as I slow down, the fears and thoughts about the future bubble up. Normally I'm too busy to pay attention to those things. Will I be able to get pregnant some day? Will I live to see my own grandchildren? Who knows. I can only hope that I will be lucky enough to have those experiences sometime.

I'm also fighting a mild cold or pre-bronchitis that feels similar to how I felt during round three. I'm taking antibiotics, drinking tons of liquids, and monitoring my body temp (over 100 degrees = phone call to my oncologist and potential ER trip). I spent some time in the garden this afternoon, weeding and checking in on my string beans, onions, kale, and tomatoes. It was nice to be outside, working in the dirt, listening to my body. I got tired after an hour or so and came back inside. I'm looking forward to having more physical energy again- in fact I hope to enroll in a Livestrong program at the YMCA that starts in August. They have free personal training for cancer survivors and I figure that will be a good way to get back in shape. I've stayed pretty active, but I like the idea of doing some weight training and chipping away at my BMI.

As luck would have it, I just took my temperature and scored a 100.2 so got to call my oncologist on a holiday. She is so awesome. We agreed that going to the ER the last time may have been unnecessary and so I've just taken some Tylenol which is all that resulted from that trip. If my fever comes back and reaches 100.5 I'll call again. I'm hoping that won't be necessary. Back to bed now!

Round #6- almost done!

It's surreal that I have just completed my sixth and final R-CHOP treatment! Everything went smoothly yesterday except that it took a little while to get my port to work correctly. I had to raise my arms, turn my head, cough, stand up, lie down, and try combinations of those movements in order for the nurse to be able to draw blood. My hernia-check jokes were under-appreciated (referring to turning my head and coughing), but otherwise I was once again taken care of very well by the staff at the cancer center. They even gave me a chemotherapy graduation diploma that had been signed by all the nurses and my oncologist.

So the next step is to ride the wave of this treatment with its potential side effects and then I will get a PET scan in 6 weeks or so to check the status of the lymph tissue in question. I was thinking that it would be sooner than that so I'm adjusting to the idea that I have to wait a little longer to get that information. But my oncologist says she's not worried about it, and I will continue to focus positive energy towards the best possible outcome, which is that there is no sign of abnormal activity any more. I'm even suspicious that the abnormal activity may be gone already and that this last treatment might not be necessary. But it appears to be pretty common practice to overtreat this type of cancer with the hope that it will never come back. So I'm down with that. Tomorrow I'll get my last Lupron Depot and Neulasta shots (for ovary protection and white blood cell boosting respectively) and then will be taking a few more weeks of pills- prednisone, zofran, levofloxazin, claritin, and ibuprofen. I can't wait to be done with this cycle and moving into the next phase!

I'm so grateful for how this has all played out. I've been able to remain active and relatively functional, the treatment has been working (as shown in the PET scan after round 2), I've received so much support in so many ways from so many people, and I've learned so much about myself and my role in the world. I've been focusing my energy on expressing this gratitude, acknowledging that I am not done with this world and that I intend to be around for a long time, and letting cancer know that it can go now. Thank you for reading this, and if you have supported me in some other way through this process, please know that I appreciate it! I have been pretty overwhelmed with the amount of support that has occurred and intended to acknowledge each act with a thank you note or phone call. I hope to find a way to get caught up on that soon, but in the meantime please know that your notes, meals, prayers, phone calls, and gifts were all greatly appreciated, needed, and meaningful. This has truly been a group effort and it would have been so much harder without your help!

Life and Death

What a week. I got a surge of energy after getting those nightmares out of my system. I've been sleeping more soundly, although I've had a couple mornings of getting up at 4/5am and not being able to fall back to sleep. I've coped with that by listening to relaxation/visualization audio tracks on my iPod and getting up to do yoga so that I don't go straight to work instead. I've been focusing on drinking enough water and eating well and drawing boundaries with work. I try not to bring work home with me if I can. My final chemo treatment is less than a week away now, and I'm really looking forward to getting good news in July after a PET scan. Unfortunately, I'm about to max out my lousy student health insurance benefits, so things are possibly going to get a but crazy in the financial department pretty soon. Plus, my temporary position as interim executive director will be gone once school starts in the fall. I'm actually pondering applying for the permanent position since I've been doing a decent job as interim, but I'm not sure how I would manage that as a full-time student.

Over the last two weeks, we've lost two important women in the community to breast cancer. It is a huge loss to the community and their families and I don't quite know how to sit with it. I can only think about it so much before I start to worry about my own situation. I've been crying a lot today, and then I try to redirect my energy towards a positive vision of my long, healthy future. I also seem to find comfort in my work when I'm faced with overwhelming emotional stress, so I directed that energy into a grant application this week. My parents will arrive on Wednesday night to be present for my final treatment, so that will be nice. There's also a lot of new life in the world- several friends had babies over the last few weeks, too. Such is the coming and going of humans on this planet. May you be well.

Rough nights

This week has been a challenge... lots of work going on and also some of the toughest nights of "sleep" I've had in my life. Most nights since I started treatment I'll wake up at some point to use the restroom and will have a hot flash. The last two nights, I've woken up every 30 mins or so starting at about 4am just feeling hot and clammy. I take my temperature to make sure it's not a fever and it's not. Having a fan on provides some external comfort, but ultimately it's my internal environment that needs comfort. Last night I had two very vivid dreams linked to the body sensations I have right now. If you're squeamish about graphic anatomical descriptions you might want to skip this... The first dream was very brief- I was pulling a long, rope-like cord from my mouth, kind of like when a magician pulls a scarf from their pocket. I was pulling frantically because the cord was blocking my airway. I woke with a start and was relieved that I could breathe, but a little scared that I felt I had been drowning/choking in my sleep. I went back to sleep and later on dreamt that my tongue had come out, still attached to my esophagus and other organs. I was holding it in my hands in front of me and it looked swollen, discolored, and coated with dead tissue. I then realized that I couldn't speak and tried to scream. The scariest part of these dreams is that the sensations involved were present when I woke up so it was like waking up into the nightmare instead of the normal relief of realizing it was "just a dream." I still found relief and comfort once I knew I could breathe and speak, but it sure was emotionally exhausting to have these visceral experiences in the middle of the night. I hope that I'll be able to sleep with more peaceful dreams tonight.

It's hard to believe that two weeks from now I will have received my 6th and final round of R-CHOP. Every time I say or write that I'm tempted to add an "I hope..." to the end. I really do hope that this will be the last time I have to be treated for cancer, but I also understand that there are no guarantees. For any of us. It will be a relief to hear "you're in remission" after my PET scan in July.

Another thing I've been struggling with is how to react when people say "I look good." There's usually a tone of surprise behind the comment, which makes me wonder what people were expecting me to look like. Colorless? Waif-ish? I sometimes feel uncomfortable when people comment on my appearance because I know that there's so much more to me than my external body. It's also problematic for me because although I may "look good," I don't always feel good. Ours is such a visual species and I often wish that our other senses were more dominant. Although I'm not sure I'd want people saying, "you smell good" either. Does this sound too sensitive? It must be hard for people to know what to say, and I don't want to be critical but I also want to express how it affects me when only one aspect of my experience in my body is focused on. I'm also in a heightened state about this because of the gender and women's studies class I'm taking right now. The complexity of society's values around gender which includes hair, makeup, body type, fashion, etc... interesting stuff but also a bit exhausting. So I guess for now I'll just say "thank you" when someone says I look good.

My mom sent me a guided visualization audio recording that also includes some affirmation meditations. To paraphrase one of the sayings:
"Thank you, cancer, for helping me to idenitfy what's important in my life. I know that I have work to do, and you can go now."

#5 Tomorrow

I notice that I haven't written for a while. It's partially because I've continued to stay busy even with school being out for the summer, but it's also because I'm ready to have this chapter of my life over with already. I am grateful that I haven't had too many major side effects of chemo, especially the nausea that I might have had. The main effects I continue to feel are hot flashes, some neuropathy in the fingertips of my right hand, and a general sense of fatigue. It takes me a long time to complete simple tasks I used to breeze through. My brain feels a little bit like a hard drive that has too many programs running at the same time. I'm looking forward to having a lighter work load sometime in the next few months as we hire a new permanent executive director, but I've still got to make it through that transition. The farmers' market I organize starts next week. I've been slowly chipping away at schoolwork from last semester since I earned three "incomplete" grades. I'm hoping to join an exercise program next month at the YMCA that's organized by the Livestrong Foundation- free personal training! It's nice to be able to say that I'm two thirds of the way through chemo, and I will be very relieved when I get PET scan results in July that say I'm cancer free. I'm hopeful that that will be the scenario, and get a little terrified when I think of the alternatives so I try not to do that. Well, I better get to sleep- need to be at the cancer center tomorrow morning for blood tests and consultation before I get infused... thanks for checking in!

Halfway Through Chemo

Just got my fourth round of R-CHOP infusions on Thursday which officially puts me into the second half of my chemotherapy treatments. Looking back at the last 9 weeks, time has certainly flown by and I'm grateful that it hasn't been too rough of a journey so far. I'm feeling less stressed now that school is out and the weather is warming up. When a good friend was here a few weeks ago, we planted kale, onions, beans, and spinach in the backyard garden. I'm looking forward to a great summer where I hope to be declared cancer-free by the end of July. The medical bills are certainly piling up, and I'm doing my best to stay calm and remember that most of the medical providers are willing to make no-interest payment plans and many of them offer financial assistance if we qualify. So far we've been denied financial assistance because either we make too much or my retirement account is too full and therefore disqualifies me. Once I've finished chemo and had another PET scan and the rest of the bills come in, I should have a general sense of my overall financial responsibility for this treatment and I imagine our assets will be pretty depleted by then so hopefully we'll be eligible for financial assistance by then. Okay, now I'm feeling tacky for talking about money, but I just want to acknowledge that this is a big part of the stress of having cancer. I'm resistant to the idea of withdrawing money from my retirement account, small as it is, because it feels initial symbolic- like I'm withdrawing faith in my own longevity. The truth is that it's just a special savings account for emergencies and this certainly qualifies as one. I've got plenty of working years to build it back up again. There is one thing for sure that I wish I had in place before I was diagnosed. I wish I had better medical insurance. The student health insurance I have through WMU has a $100,000 maximum benefit per condition that I will exceed soon. It's still better than having no health insurance, because they've been paying 80% of my bills so far and they have the negotiated discounts with the medical providers. But I added an additional policy with Blue Cross Blue Shield in March that has lower premiums and no maximum per condition and also includes a maximum out-of-pocket for me. The only problem with that insurance is that there is a mandatory 6-month waiting period for pre-existing conditions unless you've previously had an employer-sponsored insurance plan (which I didn't). My coverage will kick in with BCBS (conveniently for them) right after I'm done with treatment. So for anyone reading this, I highly recommend reviewing the fine print of your health insurance, checking with eHealthinsurance.com, and seeing if there is a better, cheaper plan out there for you and your loved ones.

Now back to more happy stuff. I'm really enjoying the greening of Kalamazoo as it warms up and we get spring rain and thunderstorms. Many of the trees are in bloom, bulbs are flowering, and the birds are singing. My new haircut certainly helps me regulate my temperature- I can drive with the window down and feeling the breeze on my scalp when I'm having a hot flash. Many folks have commented that I have a "great-shaped head." For a while I wasn't sure if people were just saying that because they don't get to see many people's shaved heads. But when an oncology nurse echoed their comments, I asked her if everyone's heads turn out to be "great-shaped." She said absolutely not- many people have lumpy, asymmetrical skulls. So I guess I lucked out. I'm also quite happy that I still have eyebrows and eyelashes, which many patients lose as part of chemo. They've certainly thinned, but they're not gone. I still have some arm hair, very thin and scattered leg hair, and pretty much no underarm hair which is actually pretty convenient. I can literally take a 2 minute shower with a bar of soap and dry off very quickly, too.

As treatment #4 drew near, I was appreciating not having to take any pills and being able to eat and drink whatever I wanted. So I was also dreading the upcoming infusion and the possible side effects. I want to feel positive things about the treatment and I do believe it's working, but I still am experiencing some conditioned responses. I made sure not to eat too much when I got home from chemo on Thursday because after treatment #3 I came home and ravenously ate a rich meal and then couldn't handle eating any of the leftovers. Not because it didn't taste good or that it made me nauseous- I just associated the meal so strongly with being at the cancer center getting infused that I didn't want to relive it. I've also found that I consumed way too many products with ginger of various forms in them at the beginning of treatment and I now have a hard time enjoying the flavor. I will have to find a way to re-associate that flavor with health and positive things because I don't want to leave it out of my diet. Still, all of these things will hopefully be temporary minor challenges that will be over by the end of the summer. And I am so thankful for that.

Birthday ramblings

Sorry to have kept you waiting for an update... it is finals week at school and unfortunately is coinciding with the low point in this chemotherapy cycle. I've resisted posting during this time because I don't want to complain or even document too much of the negative part of this process, but I guess it's just feeling necessary this morning. Yesterday, I turned 34 and it was generally a good day. I had to go to school to turn in a project and help clean a few studios and then I came home a took a birthday nap with the cats. I then met up with a friend who shaved my head. Mark joined us to, and was very helpful in managing the videocamera and took some great stills, too. It was a great process of letting go. I'd given my hair a chance to fall out as much as the chemo was going to facilitate, and was ready to take the plunge into baldness. I'm still getting used to the sensations involved in having a bare scalp- it's been rainy and a little cold so having to come up with different strategies for staying warm and dry while having hot flashes every once in a while, too. After the haircut, I went to a great board meeting at the co-op and then came home.

As my birthday was approaching I realized that I was stuck between two ways of thinking about the length of my life. In the past, I've noted my age on my birthday in relation to an assumed life span of 100 years. So this birthday in the past would have automatically been indicative of entering the second third of my life. I've had to challenge that assumption over the last few months, and I'm now much more aware that none of us knows when our life will end. With the looming threats of this cancer sticking around or another type of cancer showing up in the future, I could still just get in a car accident tomorrow and be gone. And it's never been any different than that, but what's different is my awareness of that fact. I feel a little lost not knowing how much time I have left, but it's also strange that I'd been living with a potentially false assumption about my life expectancy. The take home message for me with all of these confusing thoughts is that it's how well I live each day that really matters, not so much that I collect a hundred years but that the years I collect are well spent. It's not an easy thing to digest, and I feel overwhelmed at the idea that I might not be fully taking advantage of each day. These thoughts make it hard for me to stop, rest, and breathe, because I don't want to miss out on an opportunity to do something important. The ironic thing is that I'm missing out on existence by not stopping to breathe!

The cold that I picked up a while back seems to have migrated into my lungs a bit, so hopefully the antibiotics I'm on will keep that at bay. I'm reminded of a strong memory from fifth grade science camp when I got laryngitis and laid in bed at night listening to the sound of my lungs wheezing. It is grey and cold outside today, and I would love to just stay in bed so maybe I will. This is no fun. What brings me some solace is that I know it will soon pass. I won't feel like this forever, and it could be a lot worse and it's not. I struggle with finding a balance between honoring the negative emotions and painful body sensations that come with a need for positive outlook and hope. I'm scared that I will continue to feel worse as treatment goes on, which is a little silly since almost every doctor I've talked to said that is what I should expect. I guess it's just feeling more scary now that I have a sense for how it physically feels. I'm used to being able to do anything at any time and I don't like having to admit that I need to stop and rest, to let things go like turning in a final paper on time for an A. So I'm going to practice stopping right... now.

Immunity

Mark and I spent a couple of hours in the ER Monday night because I was running a slight fever. Because I'm immune compromised, my oncologist doesn't fool around with infections so she advised us to go straight there when we called her around 10pm. It's incredible that we were able to get a hold of her so easily, and she is an incredibly dedication and generous person for being available at that time of night. At the hospital, they gave me 1000mg of Tylenol and did a bunch of tests- a chest X-ray, two blood draws (one from the arm and one from my chest port), and urine. In the meantime, my fever came down and the first tests didn't indicate anything beyond the viral/cold symptoms I've had for a week or so. I should get information about any possible bacterial infections from the blood cultures they took by Wednesday night, just in time for my next chemo treatment that's scheduled for Thursday. This is the last week of classes at WMU, and I'm doing my best to keep up but not really succeeding in that effort. I'm disappointed that I will be taking "incompletes" in 3 of my 4 classes, but also very grateful for the compassion and flexibility my instructors have offered throughout this situation. Next week is finals and then I'll have a little more time to take care of myself and also will be less exposed to people in a recycled air environment which may have contributed to me getting sick last week. I spent most of the day today in bed, doing some emailing but mostly just zoning out. I hope to be a little more productive tomorrow but I also want to continue to conserve energy for healing my body.

Good News!

Just a quick note to share that I got a PET scan on Monday and got the results on Thursday. The suspect lymph node in my neck has significantly reduced in size since the end of January when I was last scanned. I'm not in full remission, but the cancer is responding to treatment after only two sessions! The area on the left side of my neck and the Waldeyer's ring that "lit up" in the January scan were also not present in this week's testing, which means that either I never had cancer in those places or that they have been completely resolved by the treatment. This is great news to propel me forward into further treatment and healing. I'm going to bed now but just wanted to pass that along!

New Territory

This is the first weekend for a long time that hasn't been full of work and school tasks. I only have a few things on my calendar, and they are mostly fun things. I'm looking forward to laying low and letting my body recover from the long week. I'm about half-way through my second round of chemo, and this round has felt distinctly different from the first. I wasn't nearly as wired and energized by the prednisone in the first part of the cycle, and I have had cold-like symptoms (congestion, sneezing, body aches) for most of the week. I also had a few extremely weepy days where tears were flowing in response to things that would not normally have evoked them. Some of the body sensations I've had this week don't fit into previously used categories like nausea or pain, so I'm trying to develop some new vocabulary to describe what I'm feeling. Having limited words to describe the sensations also makes it hard to decide how to soothe myself in the face of those sensations. Are they uncomfortable enough sensations that I want to take a pill to treat them? If so, what kind of medication do I take? Tylenol? Anti-nausea drugs? Benadryl? There's also the psychological challenge of noticing these sensations and worrying that they are going to become more common and extreme in future cycles. Realizing that there may be days where I can't or won't want to get out of bed. Being grateful that I can get up and do things now. So much for not having any side effects. I was hoping that the lack of side effects during the first round really was indicative of a low side-effect future. So I'm also a little disappointed and having to readjust my expectations.

All of this is going on during a week where I submitted two grant applications for work, was presented with two student awards at the WMU annual awards ceremony, got my official acceptance letter into the Printmaking BFA program, and attended the opening reception for the Annual Student Exhibition, where three of my prints are on display. I also continue to be overwhelmed with surprise gifts, cards, and notes from people outside of Kalamazoo who are rooting for me. Thank you! It has been a week full of powerful emotions, most of which were incredibly life-affirming and energizing. And I really needed energy and love to get through this week, so am so grateful for the support in all the ways that we are receiving it.

In hair news, my shedding seems to have slowed down so I still have some left. My current hypothesis is that the rest of it will fall out starting next Thursday, which is 14 days after my most recent infusion. Hmmm... if I were a gambling woman this would be a good opportunity to start up a betting pool. When will all my hair be gone? For some reason I'm reminded of the cow pattie bingo that was always played at UC Davis' picnic day. You bet on a square in a giant grid and then they release the cows and whoever's square get's pooped in first, wins! It's not really that shitty (sorry, I just had to get that in here) that I'm losing my hair, and I'm getting used to wearing hats and head scarves whenever I'm outside the house.

School will be out in a few more weeks, so that will be a good transition into a slower and more simple schedule. I can then use the time that I would be in class to take really good care of myself. I'm looking forward to doing more backyard gardening this year, since I won't be part of the gardening program at work this summer. It will be a nice way to get outside, bond with the earth, and grow some yummy food!

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.

Information Day

Wow, we got a lot of information today, including the great news that we now have six fertilized eggs on file with the University of Michigan! It is a relief to know that all the injections and driving time really paid off. I had an echocardiogram this morning which was really entertaining. My mom and I got to see what my heart looks like through ultrasound from various angles, and got to listen to the sound of each valve swishing around in there. Then we met up with Mark at the cancer center and set a date for chemo to start. My first infusion will take place on Monday, and we'll find out how long it takes based on how well my body tolerates the meds. It is possible that I'll need to stay overnight. It feels good to be moving forward- that much closer to being cancer-free!

Needle in the "Haystack"

Just woke up from a nap with Javi and Mark. We drove to Ann Arbor through a "wintry mix" this morning for the egg retrieval procedure. I once again opted out of the Versed that was offered, which might have actually made the nurses more nervous that I was. One nurse said, "why would you do that?" and another said that she'd never worked with someone who opted out of it. I feel pretty clear at this point that pain medications like Fentanyl in combination with breathing exercises are more than adequate for me when undergoing painful medical procedures. The benefits of opting out include being more alert and functional after the procedures, being able to remember how the procedure worked, and I have to admit a sense of pride that I'm able to get through the experience without relying on additional medication with potential side effects. I totally get how another person would see there being more benefits than downsides to taking Versed for a procedure like this, and the nurse actually amended my consent form to say that I understood the risks of opting out- stated as risks of "discomfort" and "memory." Considering that Versed comes from the family of date-rape drugs, I feel that not having a memory of the procedure could be a bigger risk to my overall well being.

So here's my memory of the morning's procedure. We arrived around 7:30am and didn't have to wait long until I was called back into the procedure room. I was under the impression that Mark was going to be able to sit with me during the procedure, and we found out that this wasn't the case at that point. I was a bit angry about the change in our plans, but I let it go pretty quickly so that I'd be in a calm state (also helpful for convincing the nurse that I didn't require Versed). I changed into a gown and thin blue booties, visited the restroom, and walked through a door to the room where the procedure was going to take place. The sedation nurse got me set up with heart and blood pressure monitors, warm blankets, and answers to many of my questions. She then placed the IV with little effort- I was concerned that this might take a while since I'm not too easy to get an IV in when I've been fasting. Things moved along pretty fast from there. She administered some anti-nausea drugs while we waited for the doctors to be ready. Several of the staff had experienced power-outages at home that morning due to the snow/rainstorm and downed trees so that was a  main topic of conversation. Once the two doctors and the med student were ready to go, the first dose of Fentanyl was administered through the IV and it kicked in pretty quickly. They used the ultra sound to get a look at the state of my ovaries, and then added the needle attachment to the probe which would be used to retrieve the eggs and the fluid in each follicle. There was certainly some pain and discomfort with each poke of the needle through the tissue and into each follicle, but I just kept breathing and reminding myself that it would be over soon and that this was an important means to an important ends. At one point, a follicle was pierced by the needle and I reflexively gasped in response to the sharp pain. I asked for more Fentanyl at that point. So they aspirated all but one of the follicles with relative ease, having to push on my uterus from my belly to move it out of the way of the needle while working on the right ovary and having to thread the needle through some of the cervical tissue at that point as well. This was remarkably less comfortable than the left ovary aspirations. The final follicle was a bit stubborn- as they pushed the needle towards it, it moved away rather than being pierced with the needle. It turned out that there was a clot in the needle that needed to be cleared before they could aspirate the last follicle so it got to be pretty painful at that point. All of the aspirated eggs and fluid were suctioned through the needle into little vials which were sent to the lab next door as they were filled. All in all, I was given 250 mcg of Fentanyl.

The lab rapidly determined that nine eggs had been retrieved and then they sent for Mark to retrieve his contribution to the effort. He required no pain medications, but perhaps it was still an uncomfortable procedure for him in its own way. Once he was done, they put him in a protective suit and cap and he got to come in to see me in the procedure room. They were nice enough to let me be the one to tell him about the nine eggs and we sat there together for a few minutes while I drank water and gradually sat up. Those of the nine eggs that were deemed "mature" are being fertilized by the ICSI method this afternoon and we should hear sometime tomorrow about how many were successfully fertilized.

In the meantime, I will be getting an Echocardiogram tomorrow morning to make sure that my heart is in good shape to handle the upcoming chemotherapy infusions. Then I have a consultation with the oncologist where I hope to get details and a schedule for the chemo plan. So tomorrow is a big day for information and next steps. I expect that chemo will start within a week, so the reality of that is settling in a bit. I'm feeling strongly that I'm ready to get started and that I also want to spend some time researching supplementary treatments such as herbs, nutrition, and immunotherapy in general. I understand at this point that the chemo is necessary to kill the cancer cells, but I would like to have a solid plan to heal my body during this process which is not part of the current chemo plan. I continue to not have any cancer symptoms and my port incisions seem to have healed nicely.

We met with a financial counselor yesterday and at least have a general plan to deal with the costs of this condition, which is absolutely no fun to think about. I'm trying to trust that I won't be completely financially ruined by this, but also trying to detach from the emotions that come up around money and finances. I'm being told pretty clearly by service providers and caregivers that my first priority has to be getting healthy, and I'm grateful that I have people in my life who are there to support me. Next week is spring break at WMU, so it is well-timed with (hopefully) my first round of R-CHOP. I will still work part-time and I can use some of my normal class time to get caught up on assignments from the last two weeks. Really looking forward to not having to drive to Ann Arbor every other day. There may just be one drive left for a follow-up on Monday. I plan to update the blog again by this weekend with the info that I get tomorrow. Thanks for following along, and may you be well.

One Last Shot

Tonight at precisely 8pm EST, I injected myself with the final shot of the IVF process, human chorionic gonadotrophin. This will stimulate the eggs we've been encouraging to finish the maturation process so that they can be "retrieved" on Wednesday morning. As of this morning, there are 4 front runners (follicles that are at least 1.8cm) and 5 others that are potentially mature enough (greater than 1.5cm) to get fertilized. It's very exciting to have this all happening and only slightly gross to think of how the doctor is going to get them out. I'll spare you the details, and leave you with the idea that this may be the most unpleasant procedure I'll go through, including chemotherapy. I am looking forward to knowing how many eggs we got and how many of them get fertilized (on Thursday). They will then be frozen until we are able to use them.

The next phases will including starting chemo treatments and solidifying a plan to heal my healthy immune cells that will be caught in the crossfire. I am grateful that all of my professors at WMU are being supportive and flexible with me as I'm trying to keep up with the four classes I'm taking. It would be great to finish those classes on time in late April and then have the summer off from school. I am also hoping to have less responsibilities at work soon, but in the meantime I'm grateful to have a job that I enjoy and coworkers that I love working with.

Stress and Gratitude

As my oncology appointment next week draws near, I'm feeling more agitated and stressed out. Although my first chemo treatment has not yet been officially scheduled, I imagine that it will begin soon after my Thursday appointment. It doesn't help that I've been getting up at 5am every other morning to drive to Ann Arbor for egg check-ups and that I'm full of FSH and the extra estradiol that my body is producing in response. Hopefully I can get back on a somewhat normal sleep schedule after the retrieval early next week. On a positive note, I got to see progress in my follicles at the appointment on Weds so at least I feel more hopeful that we'll get a few embryos "on file" soon. Writing this is certainly helping me slow down and calm myself a bit. I actually took out some of my anger earlier today by yelling at robots on automated phone directories at UPS and Walgreens- a victimless crime. Of course, then I realized that at least one of those directories had warned me that the call might be recorded for quality assurance purposes. Sorry, UPS!

I'm trying to honor negative emotions that come up without getting consumed by them, and brainstorming a quick list of things I'm grateful for usually helps change my frame of reference if I need it.

What am I grateful for at this exact moment in time? Wonderful people in my life. Sunrises and Sunsets. My hair. The privilege of actually having health insurance, even if it doesn't cover everything. The Kalamazoo community. My doctors. That I don't feel sick right now. Science. Bird songs. Kale Chips. Unexpected gifts. Music. Art. Love.

Follicles ʁ Us

Things are really moving along now. My bone marrow and spinal tap biopsies came back negative for lymphoma, which is great news. I'm on Day 6 of injecting myself with FSH to stimulate extra eggs so that we can retrieve, fertilize, cryopreserve them next week. It's definitely nerve-wracking to have this potentially be our one chance to make our own biological babies, but I am grateful that we at least have this chance. It is certainly still possible that I'll come through chemo, resume my normal cycle, and that we could conceive naturally at some point- but there are no guarantees. Some women become menopausal after chemo, and some don't. Since I'm only stage II, the oncologists said it was reasonable to delay chemotherapy to go through this process, and we are participating in the Livestrong Foundation's Fertile Hope Program, which helps cover a large portion of the cost of IVF for cancer patients. I know that Lance Armstrong has gotten some bad press recently (which he deserved), but I for one am grateful for the work that his Foundation is doing- it's so much bigger than him. So by sometime next week, we will know how many embryos will be waiting for us once chemo is over and we are cleared to transfer one or more of them into my belly to bring them to the next phase of development. That idea will be helpful to hold on to when I'm feeling discouraged, tired, and hopeless over the coming months- my carrot on the end of the stick.

I have to say that I've become rather geeked-out on the science I've been learning about over the last few weeks, although it may be serving as a defense mechanism to keep me from becoming overwhelmed with feelings of fear, anger, and doubt that have been surfacing recently. It's tricky to accept that I have cancer when I don't have any symptoms besides a lump in my neck, and that the treatment to cure it may make me feel more sick than the disease itself makes me feel. That's been weighing pretty heavily on my mind recently. I try to funnel that into some sort of gratitude practice around how good I feel physically right now so that I can appreciate it while it's here, but some negative emotions still surface when I think about the pending treatment that is about 2 weeks away.

I am pretty excited about the photo project that I've started with a fellow art student and will be sharing images from that soon- probably as an external link attached to this blog. Just pulled some Chickpea Burgers out of the oven, so I'm off to eat good food from the Cancer Fighting Kitchen cookbook. Here's the recipe if you want to try them, too!

Ouch

Yesterday's procedures went way better than I anticipated them to be, but now the recovery is more painful than I expected. I'm not taking any prescription pain meds like I did after the last two biopsy surgeries so it's just me and extra strength Tylenol and a bunch of reclining. My lower back aches only when I need to move around, but a rather large area around the port aches pretty constantly plus I have limited mobility of my right arm and my neck until the port gets settled in. In a week I'll go back to the hospital for a "port site check" and hopefully will get my biopsy incision checked at the ENT that day, too. I'm hoping to have bone marrow biopsy and spinal tap results by the end of the week, which will be sent to my oncologist and I'll have to call her to get the results. Or maybe she'll call me when the results come in. The sensations from yesterday's procedures are making me grateful that this will be resolved before I start treatment, so that there will be stages to the different unpleasantries instead of having to deal with them all at once.

Three-Fer-One

I'm back home after my "three-fer" this morning of bone marrow biopsy, port installation, and lumbar puncture (in that order). The anticipation of these procedures was definitely worse than the procedures themselves. I only needed a little bit of sedation for the first two procedures and completely opted out of anxiety/amnesic medication that is fairly standard practice. For example, the nurse I worked with for most of the morning said that she typically administers 300-500mcg of Fentanyl for a single procedure and I only took a total of 200mcg for the first two combined. There was zero sedation or other meds for the lumbar puncture and I got to see the vial of 15mL of spinal fluid after the needle was already out of my back. I was surprised that the fluid was crystal clear- I must've had a different schema of what it would look like. The most painful part of the morning was by far the various shots of lidocaine, and the weirdest part was feeling the pressure and tugging on my chest during the port installation. It turns out that the port is purple, which somehow made me feel better about it, like it's a royal thing or something. It's called a Power Port because it can be used to administer IV contrast for CT scans using a special, fast needle as well as blood draws and chemo infusions. I'm definitely experiencing mild discomfort in the areas where the procedures took place, but am regulating it with Tylenol and a cat on my lap. I'm glad to have this morning behind me and so glad that I remember everything that was done today. It was definitely interesting to learn about the procedures, especially since I will likely have to go through each of them at least once more during this process.

Good News and Big Business

On Monday, February 4, I drove to Ann Arbor with my mom and dad for two appointments and spent most of the day there. My parents were able to come with me, which was a great help- they took notes and asked questions and provided company during the day. The first appointment was at the University of Michigan Comprehensive Cancer Center. We got important news from the hematologist there- the final bit of information from the pathology done on the lymph tissue they took out of my neck on Jan 18. We had been waiting to find out if the sample was positive for the MYC genetic mutation, which would have been bad news, a "double-hit". They'd already determined that the sample was positive for BCL6, and the combination of that with the MYC mutation would mean that it was an extremely aggressive cancer that typically doesn't respond well to treatment. The genetic mutations that are present in my lymph tissues are the ones responsible for making too many cells that live longer than they're supposed to, which is what cancer is all about- poorly regulated cell growth. The pathologists determined that the sample was negative for MYC, which then meant that instead of having a really bad, unresponsive-to-treatment type of cancer, I have the fifth most common cancer out there- diffuse large B-cell lymphoma, which does typically respond well to treatment. The three of us gave a giant sigh of relief in unison upon hearing this news. U of M also agreed that the lymphoma is at stage II based on my CT and PET scans, which continues to be good news.

So it seems clear that I will be going through chemotherapy soon and that the treatment will be hard on my body, but that it is a necessary step to get rid of the unruly cells that started this whole thing. The treatment will include a drug called Rituxin, which "changed the natural history of lymphoma treatment" when it was developed (according to the hematologist at U of M). It was approved by the USDA for use in 1997. Rituxin is a monoclonal antibody that targets B-cells, which have a particular protein called CD20. B-cells are made in the bone marrow and do not have CD20 when they are first made, so brand new, cancer-free B-cells will develop after treatment once the cancerous (and healthy) B-cells outside of the bone marrow are attacked by the Rituxin. The chemo treatment options include Rituxin and the use of other drugs, either CHOP or EPOCH, which is CHOP plus etoposide. I may be part of a clinical trail that includes being randomly assigned to one of these treatments. More on that after my oncology appointment on February 28.

The second appointment that day was at the Center for Reproductive Medicine. I met with an OB-GYN to learn about the process of cryopreservation of some embryos prior to chemotherapy. You see, chemotherapy doesn't treat eggs very nicely so it is wise to get some put on ice so that we can use them later. It turns out that fertilized embryos freeze and thaw better than unfertilized eggs. The Livestrong Foundation has an awesome program called Fertile Hope that subsidizes the costs of cryopreservation for cancer patients, and I've already been approved for that program (big thanks to Sara C. for telling me about it!). So over the next month I'll be going through one cycle of IVF, and then I'll get started with chemotherapy. It feels a little scary to be delaying my cancer treatment, but I feel strongly that having the chance to get pregnant with my own egg(s) later is part of surpassing this situation, not simply surviving it. We've also checked in with the oncologists we're working with and they think it's a good idea based on my age, the new diagnosis and staging, and the fact that I continue to have zero symptoms.

My parents and brother were able to do a bunch of research this week on health insurance (my current student health insurance sucks for this kind of situation), cancer support services, and other financial matters. I am so grateful for their help in navigating the interwebs and automated phone systems to dig up all that stuff while I was at work/school. There are several programs that can help under-insured folks like me to pay for cancer treatment, and so I've now applied for a Rituxin subsidy program through Genentech and some financial assistance through the Leukemia and Lymphoma Society. I'm also applying for new health insurance since the student health plan has no out-of-pocket maximum and also has a limit on how much the insurance will pay out per condition. Considering that a single dose of Rituxin costs several thousands of dollars and that I may need to be hospitalized at times during treatment, it may be easy to max out that benefit.

The next step is that tomorrow I'm having several procedures done at the hospital: a bone marrow biopsy and spinal tap to do a final stage diagnosis confirmation, and the installation of a port in my chest for the eventual administration of the chemo drugs. Tomorrow is going to be a rough day, but I get that it is a necessary step that needs to be taken. My dad will help get me to and from the hospital and will hang out with me while I'm doped up post-procedure. I'm not excited about having a port in my chest, especially so soon, to have such a visual reminder of what's going on. Since I don't have any other symptoms, I can successfully have a few moments each day where I can let the cancer thoughts slip away to the back of my mind. But if I've got a port sticking out of my chest, rubbing on my clothes and who knows what other sensations, glaring back at me in the mirror- it may be harder to escape the reality of what's going on. I imagine it will be similarly tough to see myself without hair, which I'm told will happen around the third cycle of chemo. I'm open to ideas for hats/scarves/etc. that you think would work for me as I'm not in the habit of wearing much on my head other than a beanie in the Michigan winter. I don't plan to wear wigs (unless they are very obviously wigs- like purple or something), but I imagine I'll want to cover up my bald head when I'm meeting new people or am in other situations where I don't want to have to talk about cancer. I've recruited some photo students at WMU to work with me to document the journey that my body is going to go through with cancer treatment and will be sharing some head shots shortly.

This week I chose to drop a few activities to make time to take care of my mental/physical well-being. I resigned from a board of directors where I was the co-chairperson, and dropped one of my studio classes. I will continue serving on another board, taking four classes at WMU, and my part-time job for as long as I can handle those things. It helps me a lot to keep a routine and stay busy. So with at least 6 hours/week freed up I now need to resume some previously suspended self-care habits like meditating, exercising, and eating good stuff. Posting to this blog will be part of that self-care regimen, too, since it helps me process and document what's going on. Thanks for reading!

This is Spinal Tap

Just got back from my first visit with the lymphoma specialist here in Kalamazoo. I'm a bit in shock, but what we heard today wasn't particularly worse than I was expected. The PET scan showed that there are indeed cancer cells in my neck where the lymph nodes were removed two weeks ago and also in the Waldeyer's ring but not anywhere else in my body. At this point, the pathology reports have confirmed that it is an aggressive (rather than indolent) type of B-cell lymphoma, so it's good that it has been identified so that we can treat it as soon as possible. Radiation is not used for this kind of diagnosis, so I will soon be getting a port installed in my chest and will be receiving chemotherapy for about 6 months. Before that begins, I need to get a bone marrow biopsy and spinal tap to finish up the staging diagnosis as well as some blood work and genetic analysis of the lymph tissue that's already been removed. I also need to go through some fertility steps to make sure that I can still pop out a few kids once this is dealt with. I'll write more once this has all sunk in a little more. Please send your positive thoughts into the universe for me if you can, and for all who are in need of them. Thank you.

May you be filled with loving kindness
May you be well
May you be peaceful and at ease
May you be happy
-metta practice.

PET Scans- not a Veterinary Procedure

Had my PET/CT scan today. It was a surprisingly relaxing experience since I was equipped with music and an intentional mindset to focus on creating an inhospitable environment for those wimpy little lymphoma cells. I have not been eating refined sugars since my diagnosis (cancer <3 <3 <3 sugar!) and had to cut out all sugar and carbs for 24 hours prior to the scan, so my blood sugar was nice and low- 72 mg/dL. There were no physical sensations associated with the scan, and at this point the radioactive glucose they injected me with has either decayed (half-life of 2 hours) or I've peed it out. I had to sit for about 45 minutes to let the solution get to where it needed to be before they could scan me. The actual scan took about 30 minutes, and was uneventful except for the slight nudge of a car backing into the mobile scanning unit in the parking lot. During those waiting times, I took the opportunity to meditate, breathe, and send hostile messages to the cancer cells and encouraging thoughts and images to my healthy cells. After the scan, we got to take a CD of images home with us but we don't really know what to make of them since PET scans are different than X rays or straight-up CT scans. The hardest part of the day for me was being in the waiting room at the Cancer Center and seeing all the other people who are there being treated. It seemed to me that I was by far the youngest person in there, so it elicited some strong emotions (anger, mostly) that I had to accept and move through. The next step is the appointment I have with the lymphoma specialist on Friday and we will find out what the reports say from both the CT scan I got last Friday and today's PET/CT. I expect to have a staging diagnosis at that point and probably some ideas about what the treatment options are. I also have an appointment at the University of Michigan on Monday to have a running second opinion and ensure thoroughness as a course of treatment is determined.

The Beginning

I wrote this post back in November, but did not publish it until now. I had hoped I wouldn't need to make it public.

I noticed a bump on the right side of my neck sometime in late August 2012. I didn't have a doctor look at it until I happened to be at the Student Health Center in late August receiving treatment for a feral cat bite. I took antibiotics at that point and was told that if the bump didn't go away with the antibiotics I should get it rechecked. It didn't go away, so I got it rechecked and was referred to a general surgeon for a biopsy. A needle aspiration biopsy on October 8 simple stated that it was negative for carcinoma and that if lymphoma was a concern, a tissue biopsy should be performed. I had that tissue biopsy on Thursday, November 1, and am now "playing the waiting game" until we hear back from the pathologist/surgeon combo. We had been given hope that we might get some info by the end of the day yesterday, but it's now clear I won't know anything for at least another 36 hours. Generally I've been keeping my mind off of it by watching "Breaking Bad" which may be making me feel worse when I'm not watching it. The sun is out, but it's cold and I'm not allowed to cuddle with Javier because the 2 inch incision on my neck hasn't healed and won't for another week at least. I saw an ENT doctor on Tuesday October 30 who immediately shared that "that thing's gotta go" when she walked into the exam room and saw my neck. Up until then, I had some real hope that this was something besides cancer. But she was pretty convinced that it's lymphoma mainly because I've been otherwise healthy leading up to the lump. The lump didn't hurt at all until I got the needle biopsy, it got swollen and tender and then got better. But last Friday I went lap swimming and it felt weird and then my tonsils swelled up on Sunday morning and eventually I was having a hard time swallowing even water. I started taking a new round of antibiotics on Tuesday night and perhaps that's why I can swallow again. My appetite is fine and other body functions are working as they were intended.

I will be shocked if the pathology report comes back positive for cancer. But I won't be surprised. This shit happens all around us and I'm no different that anyone else who has faced this challenge. We are all one, and the illusion of "me" is just that. Sure, I had mononucleosis when I was a senior in High School, and who knows how I got that. I've been a vegetarian for the last two years, and only smoked cigarettes for a short experimental period in college. I know enough about biology that I understand that cell mutations happen, and that we may not really have any control over that. What can I control anyways? I can try to use my remaining time well, and that probably doesn't include watching "Breaking Bad." What else could I be doing while I'm waiting around for test results? Tomorrow I'm going to get together with a bunch of wise women and pray to my ancestors. I'm going to make some art in the form of Lithographic Prints. Today I'm going to be gentle with myself and simply be who I am. I am going to escape for a little while longer. It won't hurt anyone for me to just lie in bed alone for a while longer. I probably won't have much privacy for a while if this turns out to be cancer. And if it's not, then we'll all breathe a sign of relief and get back to the grind.

I've thought about posting on Facebook but I don't want this to be about getting attention or "likes" or any of that. This is to help others who are interested to know what it's like for me and to stay updated. I may overshare, but what's the point of keeping things to myself at this point?