Friday, December 30, 2011

The Hair

When I lost my hair at age 17, I got a wig. There wasn't much available at the wig shop for a teenager, so I ended up with a big, curly, reddish wig my sister and I dubbed "Dottie," for the singer Dottie West. I wore the wig all the time - even in summer marching band and, after for some reason I had to get a new wig (no fun name this time), cross country.

If for some reason I would ever lose my hair again, I figured I wouldn't get a wig again. I was no longer a self-conscious teenager, and didn't want to deal with the hassle of a wig. But I'm planning to continue working, and that means traveling to new clinical sites and meeting new people. And I don't really want the first thing people to know about me be cancer patient. It's not that I'm embarassed or unwilling to talk about it, I just don't want to be thought of as sickly, I guess. (Tangent Alert: after my senior year of high school, about six months after my bone marrow transplant (no wig anymore), I went to Washington DC to march in the 4th of July parade with my marching band (we won). The weather was hot and our uniforms were not light. After we finished, people were feeling faint. Everyone would come up to me and ask how I was doing (it really was a lot of people). I was fine. A friend started feeling faint, so I ran over to the chaperone/doctor (did I mention I ran?). As soon as they saw me, everyone started asking me what was wrong, what did I need - I had a hard time insisting it was my friend who needed the help!)

So a couple weeks ago, I bought a wig. I'm not sure how much I'll wear it versus hats, but it's nice to have the option. I also feel it might offer a sense of normalcy.

A few days after round one, I got my hair cut. It's still a few inches long, but a change. Since I was told that I would lose my hair two to three weeks after my first chemo, I asked my brother to bring his electric shaver to our family Christmas. Tuesday my scalp started to hurt a bit, and if I ran my fingers through my hair I felt I had more hair than usual in my hand (I generally shed about as much as my cat). But it wasn't enough for me to be ready for a shave. Wednesday the scalp ache went away and I headed home. Of course, yesterday morning I started losing small clumps of hair in the shower. It was fine the rest of the day since I wasn't touching it. Today, though, I was too nervous to shower and style it - and I figure if I can't style it, it's time for it to go. Plus I want to ski with the ski team tomorrow, and I'm worried about trying to pull a hat on. So I have an appointment with Ramona, Becky, and an electric shaver a 8:00 tomorrow morning.

Round Two

As I write this, I'm sitting at the University of Minnesota, receiving my next dose of chemotherapy. Things got started at 8, when I showed up (thanks for the ride, Heather!) and had my counts checked. I was a bit nervous that my counts wouldn't be high enough to go ahead, as I'm only at Day 17 and they usually only allow up to two days either side of 21 days. But everything looked good, so I was sent upstairs to begin.

Before chemo started, I was given two anti-nausea drugs, Emend and Aloxi, along with the steroid Decadron. Then I received the taxotere (aka docetaxel). They run this one in more slowly, as people can have allergic reactions to this drug (which is why they give the steroid). Next time they can run it faster, as I haven't had any reactions.

Fast forward eleven hours. Docetaxel and cytoxan were both infused without incident. My friend Alyssa brought lunch (thanks!) and gave me a ride home, where I had an hour before acupuncture. I did start feeling some slight nausea and heartburn at this time, but they went away shortly afterward. Ginger tea may also have helped. (:

This evening, friends Ramona and Becky came over and made dinner (more thanks!). I was a bit tired after chemo, but by now I was wide awake and chatty (and still am - I'm drinking Sleepytime tea to help calm me down). Starting the evening of chemo day, I take a steroid (Decadron) for three days to help minimize reactions to the docetaxel. I also received it IV earlier today. Possible side effects of decadron include fatigue, emotional outbursts, spaciness (my term) and hyperactivity. I think I know which one I got!

On our way out, Alyssa mentioned how they really have the therapy delivery down to an exact process. They really try to make everything as pleasant as possible. The space is very pleasant, TVs are available to everyone, and so are snacks and beverages.

This morning I brought my laptop, all six seasons of Sex and The City (thanks, Pat!), a magazine, and a book. But time really flew, even though I didn't finish until 1:30 - I only watched one and a half episodes, didn't touch my book or the magazine, and didn't do enough blogging. My nurse is also a cross-country ski coach, biked to work today, and shops at a coop - I did talk to her a lot. Maybe too much. At the end, they kind of had to kick me out because I was chatting rather than leaving and they needed my "pod." Did I mention that I had received Decadron IV?

The Rest of Round One (or "Ode to Versed")

The last couple of weeks have been filled with medical appointments, acupuncture, and Christmas preparation and celebration. I continued to feel good during round one, with my main complaint being the bone pain from the Neulasta injection. The fifth and sixth days after the injection I would get an intense, pulsating pain in my low back. It kept me from sleeping even after taking two Vicodin! But I would rather deal with something like pain than nausea or just the ickiness of feeling unwell. My energy level and appetite have remained high. I know how bad it can be, though, so I'm going to refrain from my usual jokes about how I wish my appetite weren't so good... It's not a guarantee, but the good experience I've had with round one is hopefully a sign that all four rounds should go fairly smoothly.

Thursday the 22nd I had an MRI of my arm. I was almost due, but my arm did light up a bit on the PET scan (likely due to the inflammation) so Dr. O wanted to get it done - and I was ok with that. However, I was concerned about going through another MRI - if you've read previous blog posts you might know that for my arm I'm in the MRI machine a long time, and last time was quite uncomfortable, started hyperventilating, and had to be pulled out of the machine twice. In addition, the pain from the recent pnuemothorax was quite similar to that I felt while lying in the MRI tube (there must be something to this - if I figured it out, maybe I would figure out what's going on with the MRI. Any ideas?), so I was even more concerned about going through another MRI at this time. Also, prior to my PET scan I had taken an Ativan (an anti-anxiety medication), and it didn't seem to make much of a difference - I had the same pain toward the end of that exam as well. As a result of all this, I ended up having IV sedation during the MRI - made even more convenient by having my port.

Totally the way to go. A nurse was near me the whole time. I would raise my index finger if I needed the anti-anxiety med (Versed), another if I needed the pain med (Fentanyl). It didn't take care of all the pain and anxiety, but definitely lessened it. And made the time go much faster! I'm requesting Versed and Fentanyl for every MRI I ever have on my arm again.

I'm not a stranger to versed. A bone marrow test is how the presence or absence of leukemia cells is assessed. Twenty years ago, I had many, many bone marrow tests. The first one or two were done just with xylocaine, a local pain med. Then Demerol was added. That, experience, and increased confidence regarding the results increased the ease of the tests. But then, shortly after my transplant, when I still had a port, I had Versed. Wow, I'm not even sure I knew I had a bone marrow test. I also have received Versed as heading from pre-op to surgery a few (five!) times this year.

Contrary to how all this sounds, I'm not a pill taker. This last year, I needed to be encouraged to take pain meds. I didn't even have Tylenol in my house when the bone pain started (thanks, Pat!). But when it comes to Versed (ok, maybe Demerol too), I'm all over it.

Back to the MRI. Got the results the next day at my appointment with Dr. Blaes, then talked to Dr. O's nurse that evening. No sign of recurrence! My arm is quite swollen - more so than in the October scan - but everything else looked good.

To recap: PET scan, good. Lymph node, no sign of cancer. Arm, looking good. Just have to worry about that pesky, 1.3 cm lone tumor. And we're taking care of that right now (I'm actually sitting receiving round two as I write this).

Monday, December 19, 2011

Lymph Node Biopsy

I forgot to post a major event - the biopsy of the lymph node revealed no signs of cancer! That plus the PET scan results mean that the cancer has not spread beyond the breast.

I am working to schedule the MRI of my arm. Because the pneumothorax pain is similar to the issues I have during MRIs and the PET scan (it makes it hard to lie still during acupuncture as well), I may be having IV sedation this time...

First Week (Almost) Down

Almost one week after my first chemo treatment, I'm feeling pretty good. My biggest issue right now is bone pain from the Neulasta shots that are given to help boost my white blood cell count. Neulasta is generally given 24-72 hours after each chemo infusion, as a subcutaneous shot. It makes its way to the bone marrow, and somehow helps it start producing white blood cells. I got my shot on Thursday, and Friday I started feeling pain in my low back and hips. I was pretty good over the weekend and this morning, but then it started - and intensified - this afternoon and evening. I took tylenol at 6:00, then moved to something stronger at 10. I'm still waiting for the pain reliever to kick in. The pain is weird - any time I make any slight move, I get intense waves of pain coinciding with my heart beat. I think it's better when I walk. Bending over or squatting is bad.

Thursday evening I was feeling pretty good and decided to try a spin class. The pain from the pneumothorax prevented me from being able to bend over the handlebars - I spent the whole class upright like I was riding a unicycle. I guess it's just walking for me for a while yet. I see the surgeon Friday, but I may call his office tomorrow to see what they say about ski practice.

Wednesday I got my hair cut. It looked pretty shocking at first, especially since it got extra curly - I thought I looked like a lamb. It's definitely a lot easier to style! I will post a picture if one can be taken of me where I keep my eyes open! I'm told it will be 2-3 weeks before my hair falls out, last night my scalp started feeling kind of itchy, turns out it could stay itchy until it starts hurting, that's when I know it's time to get out the shaver. I did buy a wig, I initially planned to have it just for work and travel functions, but I think I may end up wearing it more as it may be nice to have the sense of normalcy. I did find a website with some cute hats and headcoverings (headcovers.com) for women experiencing hairloss, and my good friend Ramona has offered to host a "Hat Party" for me. Stay tuned.

Other than the pneumothorax and the bone pain, side effects have been pretty minimal. No nausea, no major fatigue, maybe some heart burn and fluid retention. I think I would rather have the pain than the nausea. Tomorrow I'll have my fourth acupuncture session.

Monday, December 12, 2011

Surgery Update

Surgery went well, they took one lymph node. It was very clear this was the one sentinel node, based on how it took up the dye. I guess you can also use the dye to make a guess about cancer in the lymph node, and everything looked good for me. Of course, pathology is the final assessment - it will take a day or two to get those results.

The incision is small and doesn't hurt - I can't even tell where in my armpit it is. As for the port, that's starting to hurt a bit as the meds wear off.

I had the choice to not go under general anesthesia, so did that. I didn't notice any difference. (;

One of the final things they do prior to discharge is a chest x-ray to check the port placement. And turns out I have a pneumothorax - they punctured my lung with a needle. Which meant I couldn't go home. Off to the 7th floor, where I was admitted for overnight observation.

Picking up where I left off last night. The pneumothorax has not shrunk, and has maybe even gotten a bit bigger. My oxygen saturation is still high (upper 90s as opposed to 100 prior to surgery), but it's not very comfortable when I move around. The armpit incision also started hurting, but that was taken care of with a bit of vicodin.

Pneumothoraxes (pneumothori?) can resolve on their own, or they can insert a tube in your chest to suck out the air. I'm currently waiting for the surgical team to stop by during rounds to see if yesterday's surgeon thinks a tube is required. Also if it will impact chemo, which is scheduled to start at 8:30 this morning.

Already I'm behind on my meds - I was supposed to start a steroid yesterday to help prevent nausea. You take it the day before, the day of, and the day after each chemo infusion. I also haven't eaten anything for about 30 hours, first due to surgery prep, and now in case I need surgery again. My stomach is rumbling as I write.

Hopefully I will get some more news soon.

PET Scan Results

Of course, the doctor called while I was taking the garbage out this morning, but in her message she said they DID NOT see any other signs of cancer in my body. She is supposed to call back later to go over the results, but I'm so glad she did say that about the no signs of cancer - RELIEF!

I am going in for surgery at 10:30 today, so will update my blog as more information becomes available and I have time to do the update. I will be under general anesthesia, but not admitted - I hope to be home by dinnertime.

Sunday, December 11, 2011

A New Diagnosis

It's been a while since I posted, but not for lack of news.

On November 16th I learned that I now have breast cancer. I had started getting mammograms and breast MRIs a few years ago due to my increased risk after the total body irradiation. I received my annual reminder letter in August. As you may remember, at that time I was going through radiation for my arm. I made sure that I could have the testing while undergoing radiation, that my insurance (which had changed since the previous year) would cover it, and then I sat on it. I finally scheduled everything for November 3rd. Then, November 1st I found a lump.

An MRI, mammogram, ultrasound, and needle biopsy later, I received my third cancer diagnosis of 2011 (I had a basal cell carcinoma removed in September). The tumor is fairly small (1.3 cm - Stage 1), the lymph nodes looked normal on MRI (but a biopsy will be done to make sure they're clear), and the prognosis is good. However, the suggested treatment regimen includes chemo, followed by lumpectomy plus radiation or mastectomy.

There are multiple types of breast cancer, which vary in their responses to treatment, in their aggressiveness, and are actually thought to be different diseases. My type is referred to as triple negative, as it is negative for estrogen receptors, progesterone receptors, and Her2/neu. Triple negative breast cancer is more common among younger women, is considered to be aggressive, does not respond to hormonal therapy, but responds well to chemo.

Because much of my anxiety post-diagnosis was regarding the fact that this happened so quickly after the MPNST treatment, I was scheduled for a PET scan. A PET scan looks for possible cancer cells in the whole body - radioactive glucose is injected into the body prior to the scan. Because cancer cells have a higher metabolism than other cells, they take up more of the radioactive glucose and are visible on the scan. It's commonly done when metastasis is suspected, so not standard in my case if it was the breast cancer alone. The PET scan was Friday; I was hoping to receive the results yet that day but didn't hear anything. I'm trying to stay positive.

Chemotherapy will include four rounds of the drugs cytoxan and taxotere (CT), given three weeks apart. I am going to receive chemo prior to surgery to remove the tumor; this way, they can use MRIs to assess whether the tumor is responding the the chemo (chemo is given to kill any "micrometastases" that have broken away from the primary tumor - if the cells of the primary tumor respond, then these cells are likely responding as well. If the tumor is removed prior to chemo, you can't know this). If the tumor doesn't shrink, they can change my drugs. Best case scenario is that the tumor disappears. (I would still have surgery - a little metal clip was placed in the tumor during the needle biopsy, and the surgeon would remove this clip and the surrounding tissue.) I am starting chemo Tuesday, December 13th (yes, two days from now).

First, though, I am having surgery to place a port and to do a sentinel lymph node biopsy. A port is a little catheter placed under the skin underneath the collarbone that allows IV medicines to be given without the need for multiple needle sticks. It will look like a little button sticking out of my chest. For the lymph node biopsy, a blue tracer dye will be injected into the breast, and followed to the first (or first few) lymph node it reaches. This lymph node will be removed and examined for any signs of the cancer spreading. I think 1-3 lymph nodes are typically removed, a lot less than before the sentinel procedure was introduced and thereby reducing the risk of lymphedema. Surgery is tomorrow (Monday, December 12th).

The days since November 1st, when I found the lump, have flown by, while at the same time I freak out about six weeks passing between discovery and start of treatment. There were a number of people with whom I wanted to speak in person before updating this blog, which took a lot longer than I expected. Plus I've been spending a great deal of time reading, on the internet, on the phone, and at doctor appointments. Once again, I'm realizing that battling cancer can be a full time job! The last few days I've been trying to get stuff done so I can get it out of the way prior to chemo, when I don't know how I'll feel.

One of the things I've done is purchase a wig. I didn't think I'd wear a wig again, but then I started thinking about work travel, and meeting the staff at my study sites. I don't want baldness to be the first thing they notice about me. As for the rest of the time, I'm looking for cute hats, have some turbans that I bought back in 1989, and would use scarves if I can figure out how to tie them! After trying on wigs, though, I thought maybe I would wear the wig more than I first thought - it's nice for bestowing a sense of normalcy.

I also had my first acupuncture session. The possible side effects of chemo include fatigue, loss of appetite, edema, constipation, and diarrhea (sorry if that's TMI), and vary among individuals. A few things I've heard about getting through chemo: hydrate, hydrate, hydrate (one of the metabolites of cytoxan is toxic to the bladder, plus the more you drink the faster you get all those toxins out of your body), understand your side effects so you can be prepared for them the next round, exercise (which is the one thing scientifically shown to help combat fatigue), and consider acupuncture.

I will try to update this blog more frequently the next few days as I learn the results of the PET scan, the lymph node biopsy, and go through my first chemo infusion.

Saturday, October 22, 2011

Is This It?

Since learning the good news about my MRI results, I've had some strange emotions - maybe a bit of guilt mixed with fear that the treatment wasn't aggressive enough. I feel like I got off too easy - ok, all those appointments and the talk of amputation back in May did suck, but I ended up with just a few surgeries and radiation. I didn't have chemo, I didn't lose my hair, I didn't lose my arm. My arm's here - I'm here. Minus some scarring, a hand that doesn't work quite right (I've realized recently that buttons are difficult as well), and an itchy arm, I'm not much the worse for wear. There's this feeling that I didn't do my time.

This might sound crazy to many people - why not just be happy and rejoice that I'm well, and that I didn't have to go through worse treatments to get here? I think to understand, you have to know a bit about leukemia and leukemia treatment a bit (sorry if I'm neglecting other cancers and their treatment, I just don't know them as well).

Chemotherapy often involves drugs that are extremely toxic to normal, healthy cells in addition to the cancer cells. Because they target fast-growing cells, the drugs especially affect the lining of your stomach and your hair cells (which is why you lose your hair). When I received my first dose of chemo back in 1989, the nurse who came in to deliver it wore a yellow haz-mat suit (ok, I'm sure that's not what the medical establishment calls it). It took just moments for the nausea to start - and I don't think it stopped until the chemo stopped a week later. After that came two weeks of the chemo effects - losing my hair, low blood counts, fever, etc. I lost 12 pounds in three weeks.

The idea for the bone marrow transplant was born out of the frustration that higher doses of chemo couldn't be given to kill all the leukemia cells, as they would kill all the bone marrow cells and be fatal. If some of the bone marrow could be extracted, not exposed to chemo, then given back to the patient after the final chemo dose, these otherwise fatal doses could be administered.

I was happy to have the transplant. My alternative was "maintenance chemo:" pills and a weekly shot for three years, accompanied by annual doses of stronger IV chemo. The weekly shots made me sick, and the annual chemo would make me lose my hair each time. I was entering my senior year of high school, and I couldn't imagine the next three years of college with annual hair loss and spending Friday evenings throwing up, recovering the rest of the weekend. I would rather get the higher doses, and have it all done in a matter of weeks. And the transplant worked!

But you can maybe now imagine why I associate cancer treatment with horrific experience. While I really sailed through chemo and transplant - remission after one round of chemo, no relapses, no life-threatening infections - and have forgotten much of it thanks to drugs and the healing power of the mind, it really was awful and not something I'd like to repeat. It also doesn't help that in the years since my transplant and ensuing cure, I've learned of many people who weren't as fortunate as I was. To me, the responsibility of cancer survivorship is to remember that and to live each day mindful of my good fortune (some days I do better than others).

The cancer survivor club - a club you don't really want to join (unless you receive a diagnosis, that is): some of us got here through experiences like mine, others have cancers for which they don't receive treatment and are just monitored. More recently, drugs like Gleevec and Sprycel have made it possible to join the club by not going through the hazing rituals of toxic therapy. While I'm very happy for these medical advances and hope that all cancers will eventually be treated by drugs with minimal side effects, I do feel a twinge of resentment that we all hold the same membership cards - as if I, by virtue of going through full-strength chemo, am different from survivors who received diagnoses just as traumatic and life-changing.

While perhaps this mostly just sounds really f-ed up, I write about these feelings in order to understand myself, to tell myself that it doesn't matter how we all got in the club, what's important is that we're in it. That I didn't have to go through chemo, lose my hair or a limb to be a survivor - that I can lose my guilt and my fear and keep all the joy and the gratitude.

Tuesday, October 18, 2011

Team in Training!

After my diagnosis I received an outpouring of love and support from all my friends and family, including my friends from Team in Training (TNT) and The Leukemia & Lymphoma Society. In fact, the Minnesota Chapter of TNT has created their first ever cross-country ski team and has named me as their honored teammate.

So of course, I’m signed up as a participant as well! I will be training for the 25k City of Lakes Loppet, here in Minneapolis on February 5, 2012 (www.cityoflakesloppet.com). I do not know how to ski. I’m sort of a klutz and I don’t really like being out in the cold. But I live in Minnesota, and for the past few years I’ve been saying that I should get a hobby that gets me out and enjoying this winter wonderland. And it’s the TNT inaugural ski team and I’m ready to start giving back – how could I not sign up?

If you need more, here are a few more reasons I’ll be out there, freezing my you-know-what and hitting all my loved ones up for donations:

1) During my appointments, I saw so many other cancer patients less fortunate than me. For one appointment, we sat in the waiting room with pediatric cancer patients and their parents. They were bald, in wheelchairs, wearing masks, or any combination of those. Later, when I was going to radiation, I would often run before or after my appointments. Sometimes I would bike to the University. I would walk in to the waiting room in my exercise clothes, holding my bike helmet, while around me were people in wheelchairs, attached to IV pumps, wearing masks, holding emesis basins. I participate in honor of all these people.

2) There is a high likelihood that the MPNST was caused by the radiation I had for the bone marrow transplant I had in 1989 to treat leukemia. While I’m thankful for the 22 years of almost perfect health the BMT gave me, I don’t want others to have to go through a second diagnosis. I train in order to find a cure that doesn’t cause other problems down the road – and, hey, how about one that doesn’t make one sick while we’re at it?

3) While the money raised by TNT goes to fund research for a cure for leukemia and lymphoma, these treatments are often used for other cancers down the line. For example, Gleevec, a drug developed by Dr. Brian Druker to treat chronic myeloid leukemia (CML), is now being used to treat certain types of breast cancer and even a type of sarcoma, gastrointestinal stromal tumor (GIST). I recently learned that this is because leukemia and lymphoma cells are “free” in the blood, and therefore “countable” – it’s much easier to measure the effect a drug has on the cancer cells.

4) That being said, because blood cancers are not as prevalent as other diseases, it may be difficult to find the funding necessary for drug development. In fact, when Dr. Druker was developing Gleevec he encountered difficulty obtaining drug company support - the drug wasn’t a high priority since only 5000 people are diagnosed with CML each year, and proving that it was both safe and effective would require a substantial investment. LLS started supporting his research in 1995, clinical trials started in 1998, and in 2001 the FDA approved Gleevec to treat CML. So I’m helping to fund research for diseases that might not otherwise receive attention – and that, in turn, could help all cancers.

5) A cancer diagnosis is tough. This was my second time around and I work in medical research, and it was still overwhelming. LLS supports blood cancer patients not only by funding research, but by informing them, connecting them with the latest therapy options and blood cancer clinical trials, and also by providing financial support. As for me, I received love and support from the staff and from all the TNT participants whom I’ve met over the last few years. The people of TNT are amazing – of course I’d want to spend another season with them, training together in order to save lives!

I have pledged to raise $2000 for The Leukemia & Lymphoma Society - please consider making a donation. All donations are 100% tax deductible and approximately 76% of the funds raised will go directly to research. You can donate online on my Web site: pages.teamintraining.org/mn/cityofla12/celias

If you'd prefer to mail in a donation, let me know and I'll send you my mailing address.

GO TEAM!

Monday, October 17, 2011

The Emperor of All Maladies

According to Scott, I have too many books about cancer. Which is probably true. I think I own five, and have checked another ten or so out from the library at various times the last few months.

The Emperor of All Maladies, though, is different. Whereas the other books are all about how lifestyle and diet affects cancer, this one is a history of cancer. And I love books about medical history - my bookshelves are lined with books about the 1918 influenza pandemic, the natural history of the mosquito and mosquito-borne diseases, another about how medicine's impact on history (e.g., the role of typhus in Napoleon's unsuccessful Russian campaign), The Coming Plague, you get the idea. I learned about the book from another sarcoma patient, so the timing was related to my diagnosis, but I would have read this book at some point, no matter what my own situation.

The book is written by an oncologist, Dr. Siddhartha Mukherjee, and grew out of a question asked of him by a patient regarding what exactly she was battling. Its 500 pages go through the history of cancer - from ancient texts and Galen's "black bile" theory through the rise and decline of the super radical mastectomy surgery, the identification of the connection between tobacco and lung cancer, and the ensuing battle to regulate big tobacco, the "discovery" of chemotherapy and the chemo trials of the 60s and 70s, the rise of palliative care, the identification of oncogenes and tumor suppressor genes, and finally, the rise of targeted therapies such as Gleevec, the revolutionary drug that turned chronic myeloid leukemia from a deadly, chemo-resistant disease, to a chronic disease that is managed by a single pill.

The book does express cautious optimism, but also warns against arrogance and complacency. I loved the way he wrote, and found it pleasant to read this 500 page, nonfiction history book. Others must have found it compelling, interesting, and educational as well - it won the 2011 Pulitzer Prize in general nonfiction.

Not surprisingly, MPNST is not mentioned in the book. Sarcomas - especially GIST, which is now treated with Gleevec - do get a few mentions. So while it was close to home, it wasn't too close. (:

A worse choice was the movie 50/50, which I saw last week. I can't tell you if it was good or not - I maybe should have waited to see that one, at least until after the MRI results were in! Instead, I saw it on the evening before my appointment to learn about the results. I'm a crier in any movie, even, apparently, one starring Seth Rogen. The movie was billed as a "comedy cancer," with which I have no problem; in fact I like the idea. I just didn't find it very funny, which I think was due to the timing and my personal circumstances. The main character even had a cancer similar to mine, as far as I can tell - neurofibroma (benign tumor rising out of nerve sheath cells) sarcoma (tumor of the connective tissue) schwannoma (also relates to the cell type of the tumor - Schwann Cells. My tumor was called a schwannoma until they decided it was malignant, at which point they called it MPNST (I guess "malignant schwannoma" wasn't long enough)). Tumor location was different, of course.

My next movie will be the one about the birdwatchers (and yes, I've read the book that it's based on).

Friday, October 14, 2011

Cancer Free!

Saw Dr. Ogilvie this morning, and got great news. The first thing he said was that he was very happy with what he saw on the MRI - which was no sign of cancer!

The nurse who brought us into the exam room brought up the MRI images before she left. I saw some big white blob and mentioned it to Scott, who just said "Wait for the doctor." Turns out it was my stomach (from the CT scan I'd had a few weeks ago). (>8

Dr. Ogilvie went through the MRI images with us, and pointed out where the tumor had been, the inflammation from the surgery (still!), and how he determined that there wasn't any (macroscopic) tumor present. We also discussed my hand strength and sensation (or lack of) - it could be as much as a year out of radiation for those to start returning, getting drugs for my next MRI, and full travel clearance for work.

Next step: Arm MRI and chest CT scan in January. I'll have those every 3-4 months for the next two years, then less frequently for a few more years after that. Hopefully all quite boring!

Thursday, October 13, 2011

The MRI

This week I finally deemed that enough time had passed and my arm had healed sufficiently to schedule the MRI that would tell us what my status is. I had the MRI last night.

I've never had anything but an arm MRI, so I don't know what they're like for other body parts, but for arms they suck. I was told last night that arms are one of the toughest areas to scan. I was scheduled for both a forearm and an upper arm scan, and it takes a long time because they're basically scanning microscopic cross-sections of my arm, from the wrist all the way up.

I'm usually pretty laid back about what's going on with me, but I will say that I've had a lot of medical procedures done. A lot - bone marrow tests (I can't even tell you how many, but I'm sure it's more than 20. One is enough to freak you out), two bone marrow harvests, chemo (hey, folks that are hesitant to donate bone marrow because you've heard it hurts I've done it TWICE (the first time they didn't get enough neutrophils because I hadn't been off maintenance chemo long enough) and chemo's worse), a spinal tap...you get the idea. So last night, I was high maintenance. I squeezed the little ball three times and had to come out of the machine because I was freaking out (and I had to pee - note to self: do not drink smoothies on your way to future MRIs). My back was spasming, I was getting heartburn, my breathing was getting confused - I didn't know if I needed to inhale or exhale (I'm pretty sure that's what they call hyperventilating), and I was getting dizzy.

Luckily, I had a very sympathetic MRI technician (she kept calling me "Darling" - and she was a tattoed 25-year old). Finally, when we were almost done, the machine stopped working. She said she'd gotten most everything anyway, and didn't think we needed to scan the very upper arm (the tumor only went a couple inches above the elbow). But when I left, I felt like I'd been violated. And it didn't even involve a needle or a scalpel (oh, wait, there was a butterfly needle and contrast involved). I went to the co-op, bought flower healing remedy, tapioca pudding (they were out of chocolate), and went home and drank holy basil tea (it's calming), ate the pudding (hey, it's better than drinking vodka, another option I'd been considering), and watched this season's three episodes of Glee all while curled up in a ball.

The worst thing is that I'll need MRIs (along with lung CTs) regularly for the next few years. When I see the doctor tomorrow (more on that in the next paragraph), I'm going to see if they can give me some anti-anxiety meds. Ativan, valium, whatever, I'll take it (and I'm usually the one who doesn't take pain meds!). And I'll take an antacid. And no smoothies beforehand.

I see Dr. Ogilvie at 8:30 tomorrow morning to discuss the results. I've realized I discuss and plan life around them not seeing any cancer in the MRI - what else can you do? I'm not going to plan my life around this disease. That's part of that whole kicking cancer's butt thing - not letting it affect my lfe (at least not in any negative ways). But...not until the scan was done have I really thought about the what if? What if it does show residual tumor? See? There I go.

Luckily my friend Pat is taking me to a movie tonight (50/50 - a movie about cancer, wouldn't you know - it was my choice) so I won't have too much time for my mind to wander. Please keep your fingers crossed, keep me in your thoughts and prayers (now that's a weird and demanding to ask for myself!), send good vibes and energy, whatever your personal beliefs have you do. Thanks for hearing out my rants!

Saturday, September 24, 2011

More Thoughts

Yesterday I found out that an acquaintance died suddenly last week. I knew Carl from when I was a culinary assistant at Kitchen Window. He was a wealth of knowledge on anything food, and was one of my favorite teachers at their cooking school. I hadn't volunteered at a class for a few years, but whenever I stopped in I'd always look for him. If he was there, I could always count on staying a little longer due to whatever conversation we'd get into.

Also this last week, I learned of the death of a friend of a friend, this one from cancer. It had come back in her brain and things didn't look good. But, expected or not, her friends and family had to say goodbye.

Losing someone is always terrible. Not to be morbid here, but none of us know when or how we'll go. I could battle cancer twice only to die in a car accident. The point is, we're here today. Take advantage and live your life. Tell those around you that you love them - now. Want to run a marathon? See the Great Wall of China? Change your job? Think about how you can make those things happen.

One of my favorite quotes:
This is the beginning of a new day. God has given me this day to use as I will. I can waste it, or use it for good. What I do today is important, because I'm exchanging a day of my life for it. When tomorrow comes, this day will be gone forever, leaving in its place something that I have traded for it. I want it to be good, not evil; success, not failure; in order that I shall not regret the price I paid for it.

- W. Heartsill Wilson

Post-radiation, Post-celebration

Thanks to everyone who came to the celebration last week. There was a good turnout, and it was interesting - and also a little overwhelming - to see so many different friends and family all in one place.

Fighting cancer doesn't involve just the person that was diagnosed. And I'm not talking about the doctors, nurses, and radiation techs. It takes a lot of support from everyone you know. And, in turn, I don't think it's always easy to be the support crew, either. That's why I felt so compelled to celebrate with everyone.

My arm is already looking a lot better. It started peeling around the time of the party, and is almost done peeling (I think). Now it's just itchy and a bit sensitive. I'll wait another week or two to schedule the MRI that will that look for any residual cancer.

I did go ahead and have a lung scan on Monday, though. I had one initially, which was clear, and was overdue for the next one. I think I once read that MPNST is a persistent cancer that likes to go to the lungs, so I was a little anxious to have it done! Wednesday I got the news that everything looks good, yay!

Tuesday, September 13, 2011

DONE

I couldn't sleep this morning. I lay wide awake at 4:30, so read for a couple hours before getting up. I went in for my appointment at 7:45 - everyone seemed to be driving extra slow today!

I got called back right away, but wouldn't you know it, they had to reset the machine and I had to lie there for a while. I started thinking about finishing, what I would write in my blog post, and...tears came.

The machine was ready, I got my treatment, and when the technicians came in one remarked about how of course there were some issues on my last day. I realized she was maybe saying that because of my tears, so I told her I was crying because I was done.

I have been going to the University five days a week (almost) for the past seven weeks. As I was leaving, I thought about tomorrow's appointment - oh, wait, there isn't one! I'm really, really done.

The University makes it as simple and pleasant as possible. I have free access to a sweet parking spot. It's quick. I like the technicians. But it's radiation. I had to go every day, my arm is starting to suffer, and I've been in this phase of surgery plus radiation for a looong time. I'm so ready to move on. I was so fortunate to be able to mostly continue my life as normal during treatment, but now it can be even more normal. As normal as life for someone who's been through two cancer diagnoses can be.

After treatment, I saw Dr. Cho, which was fairly anti-climactic. He breezed into the room, took a look at my arm, said don't put anything on it, I'll see you in a month. And that was it.

My sarcoma journey is not over by any means. When my arm heals a bit, an MRI will be done, along with a CT scan of my lungs, to see if I'm in remission. The scans will be repeated regularly over the next five years. Just as I freaked out about every bruise 20 years ago, I'm sure I'll freak out at every lump or bump or anything that just might not feel right. But this is the milestone I'm at today, and I'm celebrating.

Hanging tough is so much easier when you have a huge support crew. Thank you to all my friends and family, for all your encouragement, kindness, and offers of assistance, and who have sent me so many supportive messages over the past few months.

Thanks to Kathleen and Jonathon, who got me on a paddleboard and fixed my (house) gutters.

To Pat, for all the movies and the Big Bowl dinners (one of these days we'll make it back to trivia!)

Thanks to Tom and Gloria for spending your Memorial Day weekend working on my house and garden, while I sat in a chair and watched.

To all of my Team in Training friends, who make me believe in the cause, and the people, even more - Sarah, for waiting around at the hospital (for way too long!) to give me a ride when I couldn't drive, to Bonnie and to Dawn, for taking me out for lunch, and to Paul, Leigh, and Jodi for making Door County that much more in my grasp.

Thanks especially to Misty, who decided she would help out by mowing my lawn all summer. And for helping me satisfy my cravings for Punch more than once.

To the breakfast bunch: Maria, Katie, Misty, and Julie - for laughter really is such good, good medicine.

To the Battles clan, for offering so much love and support from California, and for hooking me up with the awesome Dr. Pollock!

To my parents, who are always willing to drive me where I need to go, even if that might be home from Door County, and to try Indian for the first time because I'm supposed to eat turmeric.

To my sister Debra, who googled when I couldn't because I didn't want to see the statistics, who pushed me to keep asking and keep pushing at each doctor, and who worked to connect me with more doctors.

And, finally, thank you to Scott, who didn't flinch about having a girlfriend with cancer, who sat down with me to strategize about searching for second opinions doctors and how to get to them, who took on cooking for me and taking care of my house, who had to learn how jewelry fastens, and who used up his vacation time accompanying me to multitudes of appointments and surgeries.

Life is good.

Note About Parking for Friday's Celebration

Just a reminder that everyone is invited to the celebration for completing radiation.

The party is 6-10 this Friday (September 16) at Moto-i in Minneapolis.
2940 Lyndale Ave South
www.moto-i.com

There are a few parking options:
Street parking (non-metered but might be hard to find)
There is also a lot across the street behind the Jungle Theatre ($2-$3 for the night)
Underground parking lot around the corner (enter on Aldrich)

Monday, September 12, 2011

DCC Weekend - Addendum

We had to leave Door County early this morning - because I had to make it back home in time for radiation session #31. Done!

I feel like I should have made one of those construction paper chains I made in junior high to count down the last few days of school every year. Perhaps waiting for the ball to drop on New Year's will never be the same again.

Because I'm down to one. One! Just one radiation session left, and that's 7:45 tomorrow morning.

The arm is bad. Every day this weekend it got worse. It got more red, more yucky-looking, more reptilian looking. It hurts to touch it. My fingers are more numb and I keep typing Gs instead of Bs (and my last post contained the word "bike" a lot). But I'm so close, I keep telling myself. It will keep getting worse for a few days, but Dr. Cho tells me it should start improving after Friday or so.

Not sure how frequently folks read this blog (if at all), but I will post as soon as I can after tomorrow's session and meeting with Dr. Cho.

DCC - an Almost DNS then an almost DNF*


*If you routinely participate in sporting events you may be familiar with the acronyms "DNS" and "DNF." They stand for "Did Not Start" and "Did Not Finish."

This weekend was the Door County Century (DCC) Ride. I'd gotten the idea to ride it when I heard a Team in Training was training for this event and that it would be the weekend right after I finished radiation (if you've read preceding posts you'll know that I missed two days of radiation due to an equipment malfunction followed by a power outage so that I'm actually not finished until tomorrow - TOMORROW!!! YES!). It seemed extremely appropriate, since I had previously determined that getting back on my bike was going to play a vital role in the healing process and that it was just a damn good way of showing cancer how I was kicking its butt.

I connected with my friend Paul, from my TNT Tahoe 2010 team and his wife, Leigh, who were going up there with the TNT team and rode (in a car) the 300-some miles to Door County with them. Friday night we headed to one of the much-lauded Door County fish boils. Shortly before left, I started feeling sick to my stomach. I attributed it to that "so hungry I almost feel sick" thing. I kind of forgot about it after we left for the restaurant and as we watched the fish boil (it's a big production), until we sat down with our food. I did not feel right. I started feeling worse and worse. I managed to sit through the rest of dinner and even try the famous cherry pie, but as we left I decided I needed to walk around a bit to allow my stomach to figure out what was going on. Mind you, I had gotten a ride from Paul and Leigh, and we were in Fish Creek, about thirty minutes away from our hotels in Sturgeon Bay. So we walked to the marina and looked at all the amazing boats. And that's when my stomach finally decided what to do - 3 or 4 times, to be exact, right into Lake Michigan (I felt like I was in college again!).

We now headed back to Sturgeon Bay and to Target (did I mention poor Paul and Leigh were still hauling me around?) to pick up some things for me. Saltines, check! Ginger ale, check! Gatorade, oops nope! We looked at medications, but I wasn't really sure what to get and at that point started feeling woozy and had to sit down at an endcap, so we went to checkout. There was only one lane open, so I got dizzy and had to sit down again while we waited.

Ok, maybe that was all too much information again. To jump ahead, I was ill into the night and really didn't sleep until 4am. By the time I woke up the next morning, my little sickness was over but I was not exactly feeling great. I started nibbling at crackers and drinking ginger ale, and instead of checking out all the wineries and little shops of Door County, I napped half the day and spent the other half watching the National Geographic Channel.

The question was, what to do about the ride Sunday? I hadn't registered yet and was supposed to do so at 4:00 that afternoon. I can tell you, I definitely did not feel like getting on a bike. I didn't feel like even getting out of bed. A big part of me wanted to head home - my parents could come get me (they really would do that - thanks, Mom and Dad!). But what about that whole showing-cancer-who's-boss thing? The healing process? That me on the mountaintop with my bike image? I called my insurance nurseline to get their opinion - how would I feel the next day; would I be up for a long bike ride? The nurse thought I'd be quite a bit better by 4, and then back to myself by the next day if I worked on rehydrating and eating a bit more.

I did make it to registration at 4, then the TNT Inspiration Dinner at 6:30 (plain pasta, no sauce, no salad, no bread, no dessert), where I was honored, along with Paul and my other awesome survivor friends Bob and Rick as Team Heroes. I still did not feel like myself. We headed back to the hotel where we got some final tips from coach EJ, then I got my stuff ready for the next day before falling into bed.

I jumped awake as my alarm went off at 4:30am, ready to roll. I met the team downstairs for pictures, feeling like myself again. That nurse was right.

I rode with Jodi, another friend from last year's Tahoe team, who was only planning to ride 50. Going into the weekend, I'd been planning to ride 50 or 70, but Saturday I'd decided 50 was plenty. My little flu bug had made me realized that my body is going through a lot right now, no need to tax it even more. So, as we left the first rest stop, I thought I saw a sign showing go straight for 50, left for 70 and 100. Jodi turned left. And there was that competitive, stubborn part of me that didn't want to let go of 70, and I didn't object. I followed Jodi to the left.

About 8 miles later it became very clear we were on the 70/100 mile route, so we went ahead with 70 with cheerful determination. Maybe around mile 40 (remember I'd only put about 80 miles total on my road bike this summer, with my longest ride being 35) I started to tire out and trail Jodi on the hills. Somewhere in the 50s I started to slow down even more. About mile 59 I realized I had a flat. It was the rear tire, and since neither of us felt like dealing with taking the rear tire off so close to the finish, we tried pumping it back up to see what would happen.

It went flat again. We pulled into a driveway just before the sign telling us there were just seven miles left to the finish and tried to figure out what to do. There was a gash in the tire itself, not just the tube, and we could feel and hear the air coming out. If we took the time to change the tube, would it just go flat again due to the bad tire? We called race support (the beauty of a supported ride!). While we waited for someone to look at my bike, I considered sagging (for those of you not familiar, this means riding the SAG (support and gear?) wagon to the finish). I'd already ridden more miles than I'd planned. I'd gotten back on my bike. Did these last six miles matter? I've never sagged. I'd never had a DNF - definitely some not too pretty finishes, but I've always finished. Would today be my first DNF?

Nope. Support came and patched my tire, did the whole taking the wheel off and back on thing, they even gave me a new tube to replace the one that had flatted so I still had another spare. Jodi and I rode the last six miles with no new challenges, and crossed the finish line together.

My butt was happy to get off the bike, but I felt great. I felt like I could go on another ride. I'd been a bit worried about my arm, but that was pretty much a non-issue. Guess I did a pretty good job of showing cancer who's boss, huh?

A huge thanks to Jodi, Paul, Leigh, Courtney, EJ, and all the great TNT peeps who welcomed me to their group this weekend and helped me make it happen!

Thursday, September 8, 2011

90% Done!

Today was treatment #29 - three more to go!

My arm is definitely getting pretty red and sore. I've stopped wearing a watch, as it's continuing to swell. My fingers also seem to be getting more numb, if that's possible (how can you measure how much you can't feel? However, I do think my typing has gotten worse - I make more typos when I hit the index finger keys). I saw Dr. Cho today and asked him, and was told that that's very possible - as the swelling gets worse, it crowds and irritates the nerves even further.

We also talked about what would happen next Tuesday. I usually have seen Dr. Cho when I'm in for radiation on Thursdays, but I'll see him again on Tuesday to look at the arm and see how it's doing. My arm will most likely get worse before it gets better - he thought about three days after the final treatment would be the worse, just in time for my celebration! Then it will heal a lot in the following two weeks, but I will have a dark arm for a long time, and that area will always be sensitive to the sun.

I made an appointment to see Dr. Cho for a one-month follow-up on October 18th. I also need to set up an appointment to see Dr. Ogilvie, although I won't have the scans for another month or even two, as all the swelling and inflammation can give false readings. I'm getting pretty anxious to have my lung CT done, though, as it's been over four months since my first one.

Tomorrow I head to Door County to ride the century ride on Sunday (while I have entertained thoughts of doing the full century (I'll miss so much scenery if I don't!), I will likely ride the 50 or 70 mile route). Even though I wasn't part of it this season, there's a Team in Training team going and they're letting me hang out with them. I'm a bit concerned about the new numbness and slight pain in my fingers and that it might impact my riding, but I haven't let it stop me yet!

We'll stay in Door County through Sunday night, then head back fairly early on Monday - I have to make my radiation session (#31!) 3:45 that afternoon!

Monday, September 5, 2011

The End of the Tunnel....

Just four sessions this week, followed by two more next week, then I'm done! I'm scheduled for my last radiation treatment on Tuesday, September 13th.

It's been a long road. To recap:

- it's malignant, no it's not, sorry yes it is malignant after all
- amputation is a possibility, amputation isn't necessary, amputation is standard of care, amputation is definitely not standard of care
- liver surgery
- three arm surgeries
- 32 radiation treatments

To celebrate this milestone, please join me in the Big Boy Lounge of Moto-I on September 16th. Bring your family and friends - everyone is welcome!

6-10 pm, Friday September 16th
Moto-i
2940 Lyndale Ave South, Minneapolis, Minnesota 55408
(612) 821-NAMA
www.moto-i.com

Radiation Update

Friday I finished my 26th radiation treatment - six more to go! I'm two treatments behind because of the equipment breakdown August 22-23, so I'm now not scheduled to finish all 32 treatments until September 13th.

My arm is now starting to show the effects of the radiation. Last weekend I noticed that it was starting to look slightly red and now, a week (5 treatments) later, it's quite red and starting to get a bit swollen. Redness, swelling, and skin thickening (yuck! Sorry if this is too much info) are all to be expected, and I'm lucky that they haven't gotten bad until now. And, really, they're not too bad, but I have a feeling that every one of these last six treatments will make a difference...

As for the other expected side effect, fatigue, it hasn't been much of an issue so far. In fact, I'm feeling great. I've been trying to run regularly, and this week I had my best run I'd for a long time. A lot of my recent struggles with running have more to do with taking way too much time off than with the radiation. I've also gotten back on my bike - Friday I rode 35 miles, and yesterday I rode 27. Next weekend I'm planning to ride at least 50 miles in Door County, Wisconsin.

I'm also back at work, as of August 25th. My manager found work for me that didn't require travel, so I started back as soon as I was able to get a return to work letter from my doc. My job is home-based, and this project is very flexible so that I can work on it on my own schedule. It's nice to be back to work - and back to a full paycheck - but I need to relearn how to balance my time!

Perspectives

More than a few times, I've been told that I seem to be "handling all of this" very well. It's made me look inside and question, am I really? How am I handling this? Should I be more upset? Am I suppressing my emotions - is there anger, tears, fear that I'm not expressing?

Back in May, when all this started, there was a lot of that. There were tears, there was anxiousness, there was anger about having to go through cancer again. Hadn't I already done my time? But, like all of us when we go through something traumatic, I moved on. I accepted what was happening and looked forward to what needed to be done.

I've read a lot of references to a cancer diagnosis being a time of transition. You look at your life, see what needs to change, and you also see what's good. I had a ton of loving friends and family that offered support, assistance with finding second opinions, lawn-mowing services, rides, and time spent laughing, forgetting about my current troubles. Summer was here, and the world was turning green and beautiful.

At the same time, I was exposed to other people in health crisis. A week after learning about my diagnosis, Scott and I met with a doctor whose waiting room was filled with kids going through cancer treatment. I saw kids - little kids - going through chemo, wearing masks to help prevent infection, kids with no hair. It helped put things in perspective.

Shortly after that, I started going to Pathways. I've mentioned Pathways a bit in previous posts. It's a place in Minneapolis that offers complementary healing services for people dealing with various health issues. In the orientation video, a woman mentioned being abandoned by friends and family after receiving a cancer diagnosis. In the group sessions I've attended since then, I've met people dealing with MS so severe they need a cane to help them walk, chronic pain so bad they can't get hugged...you get my drift. Arm cancer? Ok, I can deal with this.

I don't know why this happened to me. The total body irradiation I received almost 22 years ago is definitely suspect, but I can't be angry about that - the bone marrow transplant I received in 1989 gave me a cure, gave me life. Twenty-two years of perfect health.

All I can do is move forward and do everything I can to be healthy. And be thankful for every day and everything that I have. I've read a suggestion somewhere about keeping a "grateful" list. Every day, list five things for which you're grateful. Although I've never stuck with it, I love the idea.

Next time something happens that gets you down and you think life sucks, take a step back. Think of all the people, the things in your life that you're grateful for. Think of those folks who aren't as fortunate as you. And hopefully it will help put your life back in perspective.

Monday, August 22, 2011

(Minor) Bummer

I titled this post with the word "Minor" because I want to keep things in perspective. There are a lot worse things that could happen. But I got a call from radiation oncology, and the machine is down, so I can't get today's treatment. It should be back up tomorrow, and I show up at my scheduled time. Today's missed treatment is made up...at the end - September 12th. So now it's no longer Friday, September 9th, I have to go back in for one more treatment on the following Monday. Like I said above, a lot worse things could happen, but I'm bummed nonetheless. I was planning on going to Door County that weekend to ride the Century Ride as a sort of celebration for finishing, now it will be for almost finishing. And since the ride is Sunday, I wasn't planning to drive back until Monday, that's a long drive to make sure I get back in time for one last appointment.

Perhaps I'm blowing things out of proportion, but I guess that just shows how, even though I think I'm doing well, what a fine line this all is sometimes. How one thing not going according to plan throws things (or my mental state, to be exact) out of balance. Then there's that little part of me that worries sometimes, what if the radiation isn't working? What if I'm going in every day, and it's not doing anything? Or, is it bad that I'm getting another day off, to delay my next treatment? Ok, also kind of silly, but I'm sure I'm not the only cancer patient that has these thoughts at times...

Ok, time for Tai Chi. Just read that it's really good for your immune system - better than running, in fact (>8. Maybe it's good for your mood, too.

Wednesday, August 17, 2011

Laughter Yoga

Since my diagnosis in May I've heard the "Let me know if there's anything I can do" a number of times. Because I was mostly feeling good (ok, not after the abdominal surgery) and had a capable, supportive significant other, there wasn't much I could say. A few folks just decided they were going to do something to help and did it (and some continue to do it - thanks, Misty!). For the others...pay my medical bills? So I just said let's get together - make me laugh.

Laughing is good for you. It's been scientifically shown to make you relax, release stress, and even decrease pain and boost immunity! Plus it's free, not to mention fun (>8. With those principles in mind, Dr. Madan Kataria invented laughter yoga, which combines laughter with yogic breathing (pranayama). The body cannot tell the difference between real and fake laughter, so laughter is simulated in a group, with exercises that hopefully make fake laughter turn into real laughter.

Since July, I've been going to various classes and sessions offered at Pathways, a holistic health center in Uptown (I've been meaning to write a post about Pathways for a while now). Tonight I went to a laughter yoga class. There were just three students and the teacher, Linda, who led us through different "exercises" that were just silly enough to make me laugh without much help. We pretended we were lions and roared with our tongues out. We made a conga line. We looked through tiny binoculars made by making loose fists. All while laughing at different pitches (think high-pitched "heeheehees," and low-pitched "ho ho hos"). The other two students seemed a bit subdued and maybe even skeptical. Even so, I had a lot of fun - I was being silly and laughing, how could that not be fun? I hope to do it again in a larger group, where the self consciousness wouldn't be so evident, and the environment even more raucous.

In the meantime, I'm meeting some friends for breakfast Friday...

Laughter yoga was featured in City Pages just last month: http://www.citypages.com/2011-07-06/news/laugh-yoga-practitioners-guffaw-their-way-to-good-health/

Halfway There!

Today was radiation treatment #16 out of 32, so I'm half done! I'm still doing pretty well - the skin on my arm is not too irritated, and no real obvious fatigue. Fatigue is such a subjective thing to me, so any time I've noticed anything I've been able to chalk it up to something else. I'm not planning on experiencing faigue. I've been running regularly (ok, running/walking), have been to some gym classes, and am riding my bike. Sunday I took my road bike out, but the ride was cut short by a flat that wasn't able to be fixed.

Through some connections I met Julia, who went through surgery, radiation, and chemo two years ago. She actually works in the natural health care industry, and last night we talked about some of the things that worked for her, mostly to alleviate side effects of the chemo and radiation. She also told me about the website of Kris Carr, crazysexycancer.com. Julia was such a great resource, and I learned a lot of tips about how to prevent or lessen fatigue and burns on my arm.

Monday, August 1, 2011

Radiation

Just a brief update on the radiation treatments. I've now completed four (out of 32). I drive to the University of Minnesota for my daily appointment, park in a special spot, and swipe my card to check in, after which my name is called on the intercom. I go back to a room where a sort of bean bag mold is lying on a table (this mold was made during an appointment a couple of weeks ago). It takes a few minutes to get situated, lying on the table with my arm in the mold, with the technicians moving me and the table level so that the beam hits the same exact spot each time. The technicians leave the room, and a beeping sound means that radiation has started. It last a few seconds, and then the machine is rotated so that the beam is coming from underneath, and I get another dose of radiation from that angle. The technicians come in, lower the table, and I'm on my way. It's 20 seconds of radiation at most, and I'm in and out in 15-20 minutes.

So far, so good. I don't have any side effects yet - it will take any effects at least a couple of weeks to show up.

My Bicycle

After completing a century ride last year, I had plans for more biking this year. I found a couple of interested people and we signed up to ride RAGBRAI (Des Moines Register's Annual Great Bike Ride Across Iowa). We talked about putting some training rides together, with the biggest issue being getting my butt used to sitting on that saddle day after day. Scott and I also talked about biking to Stillwater (only a 20 mile ride via the Gateway Trail) and making a weekend out of it.

After learning I had sarcoma, I had to withdraw from RAGBRAI. Arm aside, I knew that I would be receiving daily radiation about that time (as it turns out, RAGBRAI was last week, the same week I started radiation). But with loss of strength and sensation in my left arm, I didn't know if I would be doing any biking this year.

I bought a new ride bike last year, and at first I was pretty bummed I wouldn't be using it. What helped was the realization that someone else could maybe use my bike. I asked Scott if anyone on his Team in Training tri team was having a great year but didn't have a great bike. So my bike got some use, Patty - a lymphoma survivor - didn't have to ride a mountain bike for 25 miles before running a 10k, and I no longer felt so bad about not being able to ride my bike.

A few weeks ago I did some guided imagery at Pathways. I was to picture myself now, and then picture myself healthy. Surprisingly, the healthy image that came to me was myself standing on a mountaintop, with my bike, like I had just ridden up that mountain. It was after that that I started thinking that maybe my bike was supposed to play a role in my healing journey.

My brother is an avid cyclist. This summer he's been riding 300k and 400k brevets (long distance cycling events) to qualify for Paris-Brest-Paris, a 1200k ride that he'll complete in less than 90 hours in a couple of weeks. He had mentioned once that maybe next spring, when I'm riding again, we could complete an event together. That's all he said, but my mind took it from there.

A couple weeks ago I drove up the North Shore, where there are always a few cyclists riding Highway 61. I thought about riding that road, wearing a "Team Sarcoma" jersey and stopping in the local restaurants and coffee shops. I've mentioned before that sarcomas are not very well known and not well studied. I imagined how many people I could reach just by riding my bike, wearing that jersey, and telling them about sarcoma. And what kind of funds I could raise. And how about wearing that jersey during RAGBRAI?

Back to the present. Last week I was driving into the garage when I noticed my helmet. And I started thinking about riding my bike - now. Perhaps it might be easier to shift with my hybrid - but even if I couldn't, you don't need to shift as much on the left. And the left brake is for the front wheel, for which you want a light touch anyways...so Friday I took my bike for a ride. I couldn't shift on the left, but I could brake. I only went a few blocks, but I started thinking about going for longer rides. I'm going to start gradually, in case my weak left hand does start to give out, and no big hills since I can't shift the big rings, but I thought the perfect place to start would be to ride to radiation a couple times per week. Severe thunderstorms kept me from doing it today, but stay tuned for tomorrow...

Sunday, July 24, 2011

Gifts

Last week I spent three days in Grand Marais, one of my favorite places in Minnesota. I had a few free days and wanted to get some northern Minnesota time in before beginning radiation.

I love nature. To me, it is very therapeutic. I remember when I had leukemia, I was in the hospital for over three weeks during the month of May. When I came home, my parents got me a swing for a yard that I just sat in every day, soaking up the sun and the fact that I was alive and healthy. This year, I realized that "nature therapy" needed to be part of my prescription for remission and complete and total health.

I drove up to Grand Marais on Wednesday evening. Thursday morning, I walked around town a bit and found a place to eat breakfast. I sat outside, looking at the harbor on a gorgeous day, and thought not just that this is beautiful, but "This is cleansing."

The Superior Hiking Trail Association has a Seven Summits Challenge, they name seven summits along the length of the trail, and if you hike to the top of at least five, you can earn a free poster. For me, it just seemed like a good idea to explore different parts of the trail. I had already hiked Mount Trudee (in Tettegouche State Park) in June. So Thursday morning I hiked to Pincushion Mountain, followed by Lookout Mountain. Friday I drove along the Gunflint Trail looking for wildlife and eating berries (I did hike to Magnetic Rock - not part of the challenge), then Saturday I hiked to Oberg Mountain and Moose Mountain before heading home. I didn't see any large mammals, but I did see bear scat, wolf tracks, and multiple species of birds, amphibians, and plants. As I was hiking on Saturday, I saw an all white plant called Indian Pipe - it feeds on decaying matter and is unusual in that it doesn't contain any chlorophyll. Then I saw a small Wood Frog. I started thinking of all these great things I was seeing as gifts.

Shortly after I turned around to head back to the trailhead, it started to rain. It had been cloudy when I set out, and I had been hearing thunder for the past hour, so I was ready with raingear. Even so, I got wet. My first instinct was to complain about the rain, but I decided to think of the rain as a gift as well - I'm alive, able to hike, see all this beauty around me, feel the rain.

Eventually I made it back to my car and headed for home. I turned on the radio, where I learned exactly how timely my thoughts of life's gifts had been - I learned about the death of Amy Winehouse at 27, and the deaths of numerous Norwegian youths from a shooting.

Life is a gift, and we should cherish each day.

Surgery #4 Addendum

I realized that I never provided an update with final results from my June 27th surgery. This was the surgery to remove any residual tumor, especially above the elbow, which was not looked at during the previous arm surgery.

They did find tumor above the elbow, which they followed until it went inside some of the nerve strands and ended. For this reason, they had to cut some of the nerves, so I will have some permanent nerve damage. It might take up to a year to find out what function returns and what loss is permanent.

I asked Dr. Ogilvie if he believes that all the (macroscopic) tumor is now gone, and he responded yes. In addition, some additional tissue (fat and blood vessels) was removed from the surrounding area, and this came back as negative for the presence of any miscroscopic tumor. Between this, the negative liver pathology, the negative lymph node, and the negative lung CT scan from April (I am due for another one in the next month), it appears that the sarcoma was limited to the tumor that has now been completely removed from my left arm.

A month after completing radiation, I will have another MRI of my arm to look for signs of any cancer. I will have both arm MRIs and chest CT scans quarterly, and then less frequently, to monitor for recurrence, for the next five years.

Rein In Sarcoma

Many people with whom I talk have never heard of sarcoma. As I may have described in a previous post, sarcomas are cancers of the connective tissues (muscles, bones, fat, and in my case, nerves). Sarcomas are rare, comprising only 2% of adult cancer diagnoses, but they are one of the top five cancers affecting children. There are many types of sarcomas, all with different treatments and prognoses.

Because sarcomas are rare and not well-known, there is not as much research - or as much funding for such research - to find a cure than for more well-known cancers. There are multiple foundations with the mission of promoting awareness and research for sarcomas. These include the Liddy Shriver Sarcoma Initiative, the first website I found that gave me reason for hope after reading many dismal things about MPNST, the Amschwand Sarcoma Foundation, and Rein in Sarcoma, a local organization.

www.reininsarcoma.org

Rein in Sarcoma was founded by Karen Wyckoff and her family shortly before she died from synovial sarcoma in 2001. It is the largest sarcoma foundation in the Upper Midwest, dedicated to sarcoma research, support, and education, often working with University of Minnesota physicians and researchers. Since it was established, Rein in Sarcoma has raised $800,000.

Tomorrow night, July 25th, is Rein in Sarcoma's largest annual event, Party in the Park. This is an event to honor survivors, remember those lost, and raise money for sarcoma research. It's held at Como Park and includes music, entertainment, "family fun," and a silent auction. In addition, Scott, my parents, and I will be attending a family picnic, at which I'm planning to meet Jody, an MPNST survivor, and also hoping to meet Ruth Bachman, a very inspiring woman who had her arm amputated in 2003 to save her life after being diagnosed with histiocytoma (www.ruthbachman.com).

So, if you find yourself in the St. Paul area tomorrow evening, please consider attending and supporting Rein in Sarcoma.

Radiation

I will be starting radiation on Wednesday, July 27th.

I met with Dr. Cho, the radiation oncologist, to discuss the radiation process on July 13th, two weeks after my surgery. They wait four weeks between surgery and starting radiation in order to allow the incision to heal, as radiation impedes healing. My next appointment was last Wednesday, the 20th, during which I had a CT scan of my arm and they created a mold in which my arm will be placed for each radiation session. I also got my tattoos - yes, they really are tattoos, except they are so small they look like freckles except that they're blue. The CT scan, mold, and tattoos all help make sure the alignment is exact for each session to allow the radiation beam to hit the tumor area precisely - they want the highest dose to hit where the tumor, with lesser doses targeting the surrounding area, all while avoiding bones and the elbow joint.

Symptoms will mostly be skin-related - burns with maybe some blistering, and loss of hair from the area being irradiated (but not for anywhere other than my arm - i.e., I won't lose the hair on my head). Fatigue may or may not be an issue, but I'm planning for it not to be. Finally, the long-term effects include swelling of the arm and weakening of the bones of the forearm. They are reducing the total dose I'll receive from 7000 (I forget the units) to 6200 due to my previous radiation exposure. In addition to the risk of additional subsequent cancers, they are concerned about damage to the arm bones and elbow joint. I emailed Dr. Pollock at MD Anderson, and he said that this was the dose that they would prescribe as well, which is reassuring.

Radiation will be delivered five days a week, for 31 or 32 sessions, depending on how my skin is doing. The 32nd session would then be on September 9th (I wouldn't receive radiation on Labor Day). I would have a party that next Friday, but it's the weekend of Wisconsin Ironman, at which many of my friends will be participating or cheering, so mark September 16th on your calendars!

I'm told that each radiation session will be very brief, basically a zap - it will take much longer to drive to the East Bank and park than to get radiated. Side effects will take a while to appear, and will continue for a while after completing the sessions. The radiation also continues to work for a while after completing the sessions, for that reason they will wait a month for me to have a repeat arm MRI to determine whether or not I'm in remission.

Thursday, June 30, 2011

Surgery #4

Surgery was scheduled for 3:00 Monday. I spent the morning weeding the garden, figuring I wouldn't be able to do this after surgery, before we arrived at the hospital at 1:00. Once I got into the prep area, I learned that they were running about two hours behind.

When you have four surgeries in just over two months - three of them at the same institution (the fourth, the liver surgery, was across the river on the East Bank) - you get to know the drill pretty well. I recognized all but one of the people working with me in the prep area. You also know what you dread, and for me that was the IV. For surgeries #2 and 3, it took three tries (and for one of those a fourth was placed after I was under anesthesia). Using the IV "expert." I guess I have small veins, plus they could only use the one arm. But I lucked out - the nurse got it in on the first try. Not only that, she did it so fast she was taping it in place before I even realized it was in (they use lidocaine before placing IVs). Hopefully this will be the last IV I will need for a long, long time, but if I do need one again, I am requesting her.

After the IV was in place, Scott came back to wait with me. We met the anesthesiologist, the nurse the anesthetist, the OR nurse, and finally Dr. Ogilvie finished his prior surgery and came in to discuss final details. I had scraped up my arms while weeding the garden, and when I used the antiseptic wipe on my arm, all the little scrapes flared up! Luckily, they were all superficial and the skin was not broken anywhere, so we were ok to move forward with surgery.

Finally, around 4:30 or 5, they were ready to start. The nurse anesthetist came in with a syringe of versed (an anti-anxiety med). When that made my hand and arm sting as it went through the IV, they gave me a narcotic. I was feeling loopy before we even parted with Scott.

I woke up in recovery around 7 or 8, I think. I felt pretty good. The resident working with Dr. Ogilvie came in to talk to me, but I have no recollection of what was said. I was pretty out of it, but I don't think I stayed in recovery for very long. I did have quite a long conversation with the nurse there, though. About what, I'm not sure (>8. They were fairly generous with the dilaudid, and gave me one last dose before I was taken to my room, where I would be switching to oral pain meds.

Dr. Ogilvie had given Scott an update after the surgery. The main concern had been the possible presence of residual tumor above the original tumor resection site, extending above the elbow. They located additional tumor and followed it along the tumor toward my shoulder. I guess they followed it quite a ways, as Dr. Ogilvie said he was getting frustrated as it kept going and they would have to go back and lengthen the incision. Finally, the tumor seemed to disappear. They opened the nerve and found that the tumor had actually infiltrated the nerve at this point. For this reason, they had to remove some nerve tissue, which would now probably result in some permanent loss of function in this hand. So Scott was surprised when he joined us on our way to my room and saw me using my arm, lifting my cup and spooning ice chips.

I woke up fairly early the next morning, and was waiting to hear if I could eat regular food before ordering breakfast (I hadn't eaten anything for almost 36 hours by this point!), when the resident came in at 7 to see how I was doing. I was pretty groggy, so I didn't ask many questions or retain much of what I was told. The pain was pretty manageable, with the worst of it in my arm above the incision, and he said that wasn't surprising as they were digging around a lot in the bicep.

The plan was to discharge me around noon. I ordered and ate breakfast, and they disconnected me from the IV pump but left the actual IV in. I got dressed and tried to read, but my eyes couldn't really focus on anything, so I tried to watch some tv. We learned that I didn't need any additional doses of antibiotics, so the IV was removed from my hand. By the time Scott arrived at the hospital, we were just waiting for the final discharge instructions.

I was feeling good enough that we stopped at the coop, Scott's house, and the Cake Eater Bakery before heading home, but I was fairly groggy the rest of the day and not able to focus on fine print. I felt fairly back to normal Wednesday morning.

I was able to remove the dressing Wednesday (yesterday) morning and shower. There are just steri-strips across the incision. Prior to this surgery the incision was about three inches long, and now it's been extended to about five inches, going above the elbow. Pain has been very minimal, so I haven't taken any pain meds since getting home. I took the day easy yesterday, and took an hour walk this morning. I felt just fine on the walk, so will try going back to running tomorrow morning.

The numbness in my first two fingers is definitely more pronounced. I think the thumb is about the same. I was able to cut up a watermelon and a canteloupe this morning, but I really notice the numbness in the index finger as I type. It will take a long time, maybe a year, before we learn how much of this numbness is permanent.

I will follow up with Dr. Ogilvie in two weeks, and I have an appointment with radiation oncology to get that process started on July 13th.

Monday, June 27, 2011

Lymph Node Results

Leaving for the hospital in about half an hour for surgery, but just wanted to write a brief post with some good news. Heard the results of the lymph node biopsy this morning - benign. So that means that the tumor has not spread beyond the arm.

Sunday, June 26, 2011

Surgery Tomorrow

After a lot of research last week and the creation of a laundry list of questions, I went to see my University of Minnesota surgeon, Dr. Ogilvie, on Friday. I was still trying to figure out what my gut was saying (it wasn't speaking that loudly), and why I hadn't been able to commit to having my next surgery here or at MD Anderson. I've definitely been frustrated by the slow speed of things here, and Dr. Pollock has been so helpful. Add to that the fact that at least some of my travel costs would be reimbursed, along with our non-summer weather, why was I not ready to schedule a trip to Houston?

While it's difficult to reach Dr. Ogilvie, I realized that at appointments, there aren't communication issues. He answers all questions, will pull up the MRI on the computer and explain the image (Friday he was showing the area of the tumor, and made a reference to the elbow joint. When I said "I'll take your word for it," he looked for an image where it was clearer.), and draws pictures to help explain. I have never felt rushed at an appointment, which I'm sure we've all felt with some doctors. So on Friday, we went through my long list of questions, and he answered them all, good naturedly. I think I was with him for an hour and a half. I realized that I trust him, and I feel good about having him do the next surgery. So it's scheduled - for tomorrow at 3pm (I didn't know they did planned surgeries so late!). I had known that a slot for tomorrow was available, and then nothing until July 11th, so it doesn't seem so abrupt to me.

The purpose of the surgery is to remove any residual tumor (they will lengthen the incision and look for tumor above the elbow), and to clean up the remaining tissue, in order to help ensure that they remove both all macroscopic, visible tumor, but also any cancer cells that cannot be seen. They will remove some of the surrounding muscle, but I'm told it should not impact long-term arm function. The MRI I had done on the arm on May 17th (after the last arm surgery to remove the tumor) shows possible residual tumor (especially above where they operated last time), but they cannot totally differentiate tumor from post-surgery edema on the MRI images. Dr. Ogilvie does not believe that things will have changed from the last surgery, even though it's been eight weeks.

Because the surgery is so late in the day, I'll most likely be admitted (Fairview Riverside) for tomorrow night and discharged on Tuesday. I have gotten used to having mostly normal arm function the last few weeks (although my first two fingers are still fairly numb), and not sure how far back this surgery will set me. I did learn that nerve tissue grows an average of 3cm per month. I will post an update as soon as I'm home and feeling like typing.

Wednesday, June 22, 2011

Lymph Node Biopsy

Went running early this morning (45 minutes, about 30 minutes in it started pouring!), so that I could get it done before my appointment. At 8:45 I was scheduled for the needle biopsy of the enlarged lymph node in my armpit, and I wasn't sure about how I would feel afterward.

There was a mix-up with scheduling, and the interventional radiologist and pathologist were both over on the East Bank, and I was with the ultrasound tech on the West Bank. As I'd feared, the interventional radiologist told the tech that he wasn't really sure what to biopsy (see the Frustration post - Dr. Pollock at MD Anderson had wanted an enlarged lymph node biopsied, but the University of Minnesota did not really think there was anything to worry about - the nodes looked fine, and there's only been one case of MPNST spreading to the lymph nodes without spreading to distant organs as well. But I just want to be as conservative as possible.). I'd almost cancelled this appointment in order to have it done down in Houston, but it will take two weeks to receive the paperwork that I'll need to fill out for travel reimbursement, and I didn't want to wait another two weeks.

After a discussion with me and with my orthopedic surgeon, the interventional radiologist agreed to do the needle biopsy on the lymph node in question. My other concern was that the University of Minnesota wouldn't biopsy the lymph node that concerned Dr. Pollock, but turns out there were only two nodes visible in the MRI, so I feel a little more confident that it was.

A needle biopsy is done by inserting a tiny needle multiple times into the tissue, guided by ultrasound. Cells are picked up by capillary pressure in the needle. After a few lidocaine shots to numb up my armpit, the interventional radiologist used different angles to try to access the lymph node. After inserting the needle multiple times, he handed it off to the pathologist, who verified that the cells were actually from the lymph node. The first few were not, so we kept going (I guess this is normal - even if a pathologist is not present, they collect enough cells for multiple slides, and hope they got enough of the proper type of cell). Finally, the pathologist started seeing lymphocytes. The interventional radiologist collected a few more needles of cells, and my armpit was getting a bit sore by this point, as he was pushing he needle and ultrasound transducer pretty hard, and I needed a second round of lidocaine.

Finally, they decided they had collected enough cells, a few bandaids were applied, and I was sent home. I feel like I got kicked a few times in the armpit, but not that bad in relation to other things I've had done, and I'm told it should feel back to normal tomorrow. Hopefully I will hear the results by Friday or Monday.

Turns out the pathologist was familiar with my case - both the arm tumor and the liver mass. I guess both were fairly unusual, so they made their rounds within the department. Not really the way I wanted to become famous. The arm tumor had been sent to Mayo for diagnosis verification, which I knew, but I learned today that of the 20,000 or so tissue samples read at the University of Minnesota Pathology Department each year, only about 10 are sent to outside institutions for help with diagnosis.

Monday, June 20, 2011

Today's Run

Today I went for a run. I was told that I shouldn't try running until six weeks post-surgery (tomorrow will be four weeks), that it will be uncomfortable due to the organs jostling around. But last week I ran across a busy street a few times, and that seemed ok, then I ran down the block to catch the postman and give him the letters I wanted to mail but hadn't had ready when he was at my house, and that seemed to go ok too. Then on Friday I bought a copy of the newest Runner's World, about outrunning cancer (highly recommended, by the way), and I was further inspired. So I figured I might as well try.

After walking to Como Lake, I started to run. I stopped in less than two minutes, thinking something didn't seem right. I spent the next few minutes rationalizing whether it was really organs jostling, or just a bit of anxiety about it, or maybe even just being out of shape. So I tried again, and this time it seemed ok. I did a run walk combo, and ran for about 35 minutes total. The issue was more the fact that I hadn't run consistently all year than anything to do with any recent surgery. (:

Friday, June 17, 2011

The Full Story (Part 3: MD Anderson)

Originally we'd been planning to go to New York City for a second opinion with Dr. Murray Brennan at Memorial Sloan Kettering. When we got connected with Dr. Pollock at MD Anderson, who turned out to be so responsive and helpful (in addition to being a famous expert), we decided to try to do both in one trip. Dr. Pollock's clinic day was Wednesday, and Dr. Brennan's Friday - perfect. However, once I started the process of scheduling the visit with Dr. Pollock, I learned that he was actually out of the office that day (May 16th)! When I emailed him about this, he offered to cut his trip short and see me on Thursday the 17th instead. When the visit was finally scheduled, it was at 3:30, and there was no way we could allow enough time for the visit and catch a flight to New York that evening. So we decided to meet with Dr. Pollock only - at least for now (kind of a bummer, as I'd been looking forward to spending a couple days in New York!).

Thursday afternoon Scott and I met with Dr. Pollock as planned. They had just received my records, but had not had time to review them. We discussed my case, and their approach to treating me. They also work as teams of physicians, and their conference call would be the following Tuesday. When they learned that we would be in Houston until Saturday, they made me an appointment to see the radiation oncologist the following morning. Dr. Pollock said that he would be out of town on Sunday (Sunday!), so gave me his cell number, and said that his home number was "in the book." When we seemed a bit astonished, his response was "I work for you now."

I've been a little freaked out about the thought of the sarcoma spreading to my lungs, so I asked Dr. Pollock how I can protect my lungs. He responded by saying I should just enjoy life, don't let this thing control me, don't let it take control more than it already has. None of us know what will happen tomorrow (a philosophy I have used in the past myself).

Friday morning we met with the radiation oncologist, and discussed how radiation would work. I'd actually seen the radiation oncologist at the U earlier that week, but learned some new things, like they do increasing doses of radiation in a sort of concentric circle, so that the tumor site receives a higher dose than the surrounding tissues. I will be receiving radiation five days a week for five or six weeks, so I started thinking about the logistics of how it would be to receive my treatment down in Houston (why couldn't this have happened in January?).

After that, we had a nice brief time in Houston. We found a couple of great vegan restaurants (and got vegan tamales!), drove to Galveston, took the ferry, where we saw dolphins, then went to Anahuac Wildlife Refuge, where we saw lots of alligators. I also got to see a few good birds (>8.

The Full Story (Part 2: The Liver)

Sarcomas spread to the lungs. They're not known to spread to the lymph nodes, liver, or any other organs to which you often hear about cancers metastasizing. So prior to my second arm surgery I had a CT scan of my chest, which was clear. However, it showed something suspicious in the upper left quadrant of my abdomen. For that reason, I then had an abdominal CT with contrast, which showed an atypical mass on the left side of my liver. Because I was not at risk for either primary (originating in the liver) or secondary (spreading from the arm) cancer, there was some question as to what to do next. I was sent to a liver surgeon at the U, Dr. Jensen, who did not advise an MRI, as he thought that would not provide any further information. He recommended removing the mass. Surgery would be laparoscopic (which, I learned, does not mean outpatient). However, because I was not at risk for any cancers, Dr. Pollock did not think anything further needed to be done. However, MD Anderson couldn't figure out what it was either. If someone could have told me definitively what it was and that it definitely wasn't a threat, I would have been comfortable. But no one could. So I decided to have the surgery. On May 24th I had surgery to remove the mass. When I woke up I was told that they did not believe the mass was malignant, and that it wasn't the MPNST. They still didn't know what the mass was, though, and had sent it to pathology for review.

While I was very relieved to know that the mass likely wasn't malignant, holy cow, did I underestimate what the surgery would do to me! Turns out laparoscopic also does not mean pain free. I had to learn new ways of getting in and out of bed that did not use abdominal muscles. I had three incisions in my abdomen, one in my belly button, one to the left and above, and a larger one (~3 inches) to the right. I got a pain pump with dilaudid, but I got in trouble (i.e., severe pain) a couple of times because I didn't use it enough (can you believe I'd been trying to analyze what I needed so that I didn't use too much!). I also was having a lot of anxiety, which didn't help things.

I was discharged after two days. By Saturday (two days after discharge), I was venturing out a bit. Scott's parents were in town, and we went to Linder's to buy plants. Luckily they weren't crowded. I was still on quite a bit of oral dilaudid, and I felt like everyone was standing really close to me or walking straight at me.

Things were a bit rough through that weekend, but by about 9 days post surgery I started venturing out more. Ramona came over one evening and we walked around Como Lake (all I'd done up to that point was walk up and down the block a couple times). By Saturday (11 days), I decided to get out and drive to Sherburne Wildlife Refuge to look for birds. This was the first time I'd driven since the first arm surgery over a month prior to that! It went well, I had a great time, so Sunday I went to Murphy Hanrehan Park to look for more birds. I noticed that I tired out more quickly (I had to sit down in the grass with the ticks at one point), but I decided that, while I was feeling good and driving, I should head up to the North Shore - once I had the next surgery I wouldn't be driving again so I didn't know when I'd have another chance. Monday, May 6th, I had my two week surgical follow-up, and Tuesday morning I headed north.

Knowing I wouldn't be able to be as ambitious as I usually am with my hikes, I headed to Tettegouche State Park, the best location to find Black-throated Blue Warblers. Both Wednesday and Thursday I hiked over six hours, and probably hiked a distance of 8-10 miles both days. So much for taking it easy. I was tired at the end of each day, but I felt great. I think the doctors were a bit amazed (>8.

Dr. Jensen said I shouldn't try running until about six weeks post surgery - he said I'd feel things bouncing around. So I got the idea when I was hiking that I should just focus on going on hilly walks until I can run again (~July 1). Actually, turns out walking hills uses the same muscles as running. The morning after I got back home, I walked around Como, with some "hill repeats" on the small hill leading to the picnic area. I haven't been as ambitious at finding hills since then. However, when I was out on Wednesday, I ran across Grand Avenue a few times to dodge cars. Then, yesterday, I ran down the block barefoot after the postman to give him some letters to mail. Not huge distances either time, but it felt ok. Tuesday will be four weeks, I think it's time to give actual running a try. Anyone want to go on slow runs (maybe run/walks) with me?