On Losing My Hair

So, it happened on Monday morning. At the time, we were in Sun River with the Pixtons. I was gently washing my hair, noticed several hairs in my hands and thought, "This must be it." I reached up to my head and pinched a small tuft of hair and pulled. With almost no effort whatsoever, the hair came right out. After I got out of the shower, I tried again with the same results. Almost immediately, I jumped in the car with Skye and found a place in town to shave everything off. Once I knew my hair was falling out, I wanted it all gone - right now. It was an immediate obsession.



Losing my hair was a cathartic experience. It had/has nothing to do with my appearance - I'm simply not self-conscious about that. (In fact, in some twisted way I like being bald because I've always viewed losing my hair as a necessary badge -- of courage? of pride? -- to be a full-fledged member of the cancer club.) Rather, losing my hair was tangible/visible evidence of the toxicity of the chemotherapy drugs. Sure, the chemo drugs have made me sick, but sickness can be rationalized in innumerable ways. Losing my hair, on the other hand, forced me to really acknowledge the high stakes game of body poisoning that is currently taking place within me. I'm a real cancer patient. The cancer in my body is so menacing that I need to invade my body with highly toxic chemicals or it will kill me. I mean, really, that's what it comes down to, right? Wow.

Of course, I don't believe for a second that I'm actually going to die anytime soon - I'm really not the slightest bit worried. But the fact that I'm even having a real conversation with myself about the possibility of death is, ultimately, sobering.

Losing my hair away from home in a serene cabin setting alongside a river was good. It was a little shocking. On some level I was glad to have the experience, viewing it as sort of a rite of passage. Yet I was also glad to be able to leave it behind in Sun River...

Bald and Beautiful

In honor of Jared's new look, I've created a new avatar for him:


I'll leave our family avatar on the right as-is, for now, assuming we'll look like that again a few months from now. :)

Tentatively....OK.

I had my second chemo treatment on Thursday. It's now Saturday evening and I have to confess that I'm feeling alright - well enough to get out of the house for a bit and pay a quick visit to some friends who are in the middle of their own life adventures right now.

If I continue to improve, rather than slide backwards, I think this round of chemo will be quite bearable. I'm rather excited.

Oh, and for those who are wondering, I still have my hair....

God's Little Helpers

I have to say... people have been sooo wonderful! Seriously, if you need to restore your faith in humanity, come hang out here for a while. Here are some of the things people have done for us:

• Food! Lots of people have brought us dinners and food and it is so much appreciated. Cooking is the last thing I want to think about right now.
• A friend came to my house and took all my dirty laundry (it was a lot, too). She brought it all back washed and folded that night.
• A couple people have visited make-your-own-dinner places (Dream Dinners, Dinners Ready) and brought us a pile of food to freeze and pull out for an easy meal. We've already tried them and they're SO handy.
  
• Flowers. I love flowers. Never underestimate their power around here.
  
• Jared's boyscout troop came to survey our yard. Rumor has it they're planning to pick up the slack for us. whee!
• My friend Emily stayed with us for a full 10 days and became, essentially, our live-in nanny during post-surgery, first-chemo week.
  
• I've had family come do 'round-the-house tasks. It's so great because I will never get to lots of things at this point.
• Some friends sent their cleaner to our house for an afternoon (!)
  
• Notes, Cards, Phone Calls, Emails: we're overwhelmed by the love we feel from people sending us messages that we are in their thoughts and prayers. We really feel and appreciate you.
  

It really does make us feel like part of a human family. People have reached out from all over the world. People we don't even know have sent well-wishes. Someone I don't even know actually paid for Emily's flight here! So to you all, and to everyone else who isn't reading this, THANK YOU! The feelings of love and support often overwhelm the feelings of discouragement and despair. It really does make a difference.

3 Years

Happy Anniversary to us!



Ah, what a happy stroll through memory lane.

We remembered at some point that our anniversary was Tuesday, and figured we ought to try and and celebrate despite all the craziness. It was last minute, but due to some very generous family members, we actually got to go away for a whole night! We stayed at McMenamins Hotel Oregon, ate dinner and dessert on their rooftop, watched the sunset, and enjoyed a full night of baby-free slumber. Thank you Forrest & Kaarina, rockstar overnight sitters, and Mom!

A Long Week

It would only be fair for me to admit that this has been a long week. I haven't posted in several days, mostly because I haven't felt well, not because the week has been uneventful. I know all too well that a short post every other day is more entertaining (if I can say it that way) than one long, drawn out post at the end of the week. We in the Internet/Blogging age crave new information continuously and constantly. I know for myself that I'm annoyed when I check out my favorite websites and/or blogs (Celticsblog anyone?) only to find that no new content has been posted in the last several hours. But you know, it is what is - I'm just trying to disseminate information, not entertain (although as readership of this blog grows, I feel some sense of duty to keep things interesting). So anyhow, I'll get off the philosophical soapbox or whatever you want to call it and give you a few updates:

As you know, chemo was last Friday - it's pretty much taken me a full week to get to where I'm feeling half way decent. On Wednesday night, for example, Emily was gracious enough to babysit while Skye and I went to go see the new Harry Potter movie. By about the last 30-40 minutes of the movie, I had to lie down across the seats with my head on Skye's lap - I just couldn't shake that sick feeling. I've since figured out part of the reason I was so sick for so long. I won't offend my mother's sense of public decency by sharing all of the details, but it turns out that all of the medications I'm taking (including the anti-nausea drugs, ironically) have a rather unpleasant binding side effect. About 24 hours after figuring this out (including overcompensating), I believe that I'm now a little more even-keeled. Once again, it is what it is.

I tried going into work for an hour or so earlier in the week and that didn't work out too well. Today, I tried again only because I had some things that had to be filed today. I survived without being too sick, but when I came home at about 4:30, I was as wiped out as I've ever been after a day of work. Fortunately, I don't expect to have to expend that much energy at work again anytime soon. The managing partner in my office, Greg, is about as ideal a "boss" as one can have. He has essentially told me that he doesn't care if I bill a single hour over the next several months - my entire focus should be on my health and my family. The responsible employee in me feels guilty for accepting such an attitude, yet I've already felt firsthand that it's true - I really need all of my energy to focus on getting healthy right now. So, I'm glad that I've got that support from the people at work.

I did also have a couple of doctor's appointments this week. A few interesting bullets:

• The "official" doctor's lingo is to refer to my cancer as "primary mediastinal B cell lymphoma" (for those whose curiosity demands such detail to perform a little more personal research).
• Survival rates for cancer in children and "older" adults has increased steadily over the last 30 years, while survival rates for "young adults" (18-40) have been flat over the same time period. It doesn't mean anything for my particular case, but I thought it was interesting.
• Skye and I are both sporting new LiveStrong bracelets. As some of you may know, my doctor, Dr. Nichols, is on the Board of Directors of the Lance Armstrong Foundation.
  

In Other News...

The last couple days Jared has done very little other than lay in bed in a dark room, making microscopic movements of his head to indicate his answer to the "yes" or "no" questions I ask him (even talking makes him feel sick). For a guy who has never so much as complained of a headache our entire marriage, it's pretty alarming to see him like this. He did get up this evening though, eat food my mother brought over, and play the piano a bit. I'm hoping the worst of it is over.

When my friend, Emily, heard about Jared she immediately offered to fly out here for a week to help us. I took her up on it, even though I wasn't sure what help we'd need, or if we'd even really need any. Her coming has been awesome for many reasons. Some of them: 1) We've needed tons of spur-of-the-moment child care the last several days that I could never have predicted, and I have no idea how I'd have managed without her simply available to me all the time. 2) She keeps cleaning up after me! 3) It's great for my emotional health to have a best friend around, which was Jared's prediction when we arranged to have her.

I haven't seen Emily in a long time because she's been in India the past year. This little reunion has refreshed my soul. It's weird... I am experiencing some of the most difficult moments of my life, and some of the most sweet and enlivening moments in the same week.

Here we are bathing Seville together. So much fun!


Jared wouldn't eat anything himself, but he roused himself enough today to feed Seville.


Emily takin' over the bath. Seville lovin' it.

Days 2-3 after Chemo

Pretty much suck. The itching and the swollen neck seem to be all but gone after these few short days. I thought it would have been a bit more exciting. But when the itching is replaced by what amounts to a bad case of the flu (albeit with no vomiting), it's hard to maintain one's perspective. At least I'm not dead, right? Who knows, maybe I really will feel well enough to go to work tomorrow. In a lot of ways, that would be nice. We'll see.

1st Day of Chemo

Well, I'm back, I'm alive, no drama to report. I had about 8 hours of chemo today. While there are roughly a million things I'd rather do than spend 8 hours receiving chemo, it really wasn't that bad. Mostly, I'm just kind of wiped out.

The biggest news is actually that they modified my diagnosis. Because my doctor is pretty cutting edge when it comes to lymphoma, he's got access to some advanced molecular analysis tools for researching and diagnosing lymphomas. He said that as recently as a year or two ago, he would have diagnosed me with NSHD (my initial diagnosis) and left it at that. But thanks to the cutting edge research techniques, the analysis revealed a slightly different picture. Based on the molecular markers, I actually have large diffuse B-cell lymphoma, which is actually a form of non-Hodgkin's lymphoma. The two lymphomas are very similar in both their manifestations and treatments.

The large B-cell lymphoma does respond better to a different chemo regimen. So, instead of doing the ABVD regimen, I'm on the R-CHOP regimen. The reason it took so long today was that Rituxan (the R in R-CHOP) takes like 4 hours to tranfuse. Overall, it looks as though I'm going to do 6 cycles (6 months) of R-CHOP instead of 4 cycles of ABVD. The good news, however, is that I won't have to do radiation afterwards. While people receive radiation all the time, there are more long term side effects to radiation - so that's good that I can skip that part.

Mostly, I'm just tired right now - I haven't felt sick at all. There's a metallic taste in my mouth that probably won't go away for 6 months, but I can live with that. All in all, I have to confess that I thought that after 8 hours of having toxic chemicals pumped into my bloodstream, I would feel worse. Maybe I will feel worse later. They made their point about the toxicity of the chemicals when they asked if we had pets. Skye told them that we had a cat. Does your cat ever drink out of the toilet? Why yes he does (much to my dismay, this is his favorite place to drink). They told us that we must keep the toilet lids closed because our cat could die from the toxic chemicals I'll be peeing for the next 6 months. So, there's something to think about....

I was a little nervous going into today, but it worked out just fine. Your words of encouragement, your thoughts and prayers helped me today. Thanks.

Official Diagnosis

Nodular sclerosis Hodgkin's disease (NSHD) stage 1 "bulky." That's what I've got. Stage 1 means that there's only the one tumor (in my chest). The "bulky" part means that the tumor is over 10cm (in my case it's now 12cm).

I'm starting chemo tomorrow instead of next week. Here's why:


It's a little hard to tell what's going on in this picture. I have to admit that it sort of looks like I'm grimacing or grunting. You also might think the roundness of my face is due to distortion from the camera lens. Actually, I'm not making any faces and there's no camera lens distortion - my face and my neck are just really really swollen/bloated. The tumor is restricting blood flow from my head, neck and arms back to my heart. It's also causing a constant acid reflux/heartburn type feeling somewhere between my stomach and my throat. I have to confess, it's not very comfortable. And the doctor is a little concerned.

So, we're starting chemo tomorrow in order to alleviate those symptoms. Eventually, I'll have a catheter/port installed in my chest so that I won't have to get a new IV hook-up for every treatment. But at this point, I'm too swollen for them to try and install the port. So, I'll go old-fashioned IV style tomorrow. I've had no fewer than 8 different IVs/needles poked into my veins in the last week - so what's one more, right?

I toured the "chemo" room today and was pleasantly surprised. The chemo room was in stark contrast to the oncology waiting room. When I first walked into the oncology office last week, I have to confess it was a little depressing. There were no windows, the lighting was low and everyone in the room looked old and sick - you know, like they were dying. The chemo room on the other hand is full of windows and was bright and sunny.There's a whole bunch of recliners lined up along the wall and there were various people sitting in them receiving their chemo treatments. Most of them were either reading books or typing on laptops - nobody looked miserable or deathly ill. My understanding is that the anti-nausea drugs are really good these days and it's quite possible that I won't vomit at all during the next 4 months. I wouldn't mind that.

So anyhow, I'm excited to get the ball rolling tomorrow (11:30am). See you on the flip side...

Biopsy II: The Day After

How does the saying go?... a picture is worth a thousand words? I don't have much to say tonight, but here are some pictures. Dramatic, I know.

Surgery: Take II

Here I am at Providence Portland, where they are making a second attempt at a surgical biopsy.

The Amazing Dr. Handy (according to another doctor: "that's like having Superman rip off your cast") operated on Jared about an hour ago. Now we hurry up and wait for results. This time they didn't make any attempts at on-the-spot diagnosis. Apparently it wouldn't give us any new and relevant information (we already know it's lymphoma, and the very specific information they need is not on-the-spot kinda stuff). So they've whipped Jared's tissue to lab right away. Jared, on the other hand, will have to stick around a while. Dr. Handy says he's got a pretty ugly wound there and doesn't want him going home until tomorrow.

The oncologist (The Amazing Dr. Nichols) came and talked to us before surgery and gave us some updated information. He ordered new CT scans when Jared went in last week so he could have up-to-the-minute information. Here's what we do know:

• It looks like Jared's about at what they call a "bulky stage 1." Essentially meaning there is only one tumor, but it's big. I'm happy to hear a number "1" in there, but a little alarmed at how urgent the doc thinks starting treatment is.
  
• The tumor has grown significantly in the last three weeks. (Jared has started experiencing symptoms of Superior Vena Cava Syndrome now -- swollen head and neck, trouble swallowing and talking, etc.-- because the tumor is compressing one of his major arteries pretty significantly.) The oncologist is concerned enough that he plans to lean on the pathologist for quick results so we can get going.
  
• Doc wants to start Jared on Chemotherapy as soon as he's recovered enough from surgery. This week, hopefully, so he'll be squeezing us into his schedule right away instead of waiting for our next appointment.

Now I just wait for my personal pager to go off so I can go see him (at this hospital, they give the patients pagers so the doctors can find them. ha!).

tic... toc... tic... toc...

Food Glorious Food

Seville finally had her first shot at "solid" food this week. It's so weird to think that, until now, every single cell in her body was provided by my body (except for one. thanks Daddy).

Anyway, Mommy was all excited about trying solid food, but Seville didn't think much of it.


This is the face she makes every time she gets any on her tongue. She is eating "rice" here. I didn't think it tasted like anything, but she shudders involuntarily every time I put it in her mouth, like it's so bitter she can't help it. So sad. I homemade her rice cereal (using whole brown rice, because I want to avoid refined foods). I'd better get used to her not appreciating my efforts. :) (see her shudder yourself, in the videos on the right)

Here she is, literally scared of the next bite, poor thing. I tried organic bananas next, thinking she'd like them better because they're so sweet, but no go. Her shudder was a little different, her tongue coming out like she was going to gag. I guess let's face it. even I don't like straight-up bananas that much. They have a pretty strong flavor. I shoulda thought of that.

Finally! Something she likes! Today we tried sweet potato. She sucked it up and played with it all happy. I'm so relieved, because I was starting to think I'd never get her to eat anything and I'd be nursing her till she was eighteen.

Now... if she could just learn to swallow it.

Answers, Real Honest to Goodness Answers

I know it seems odd for one to be excited about seeing an oncologist, but that's exactly how I felt when I saw my oncologist today. He's obsessed with lymphomas and I mean that in a very good way. Everything he said jibes with the research I've done - it was like he was validating the last 8 months of my life. Every other doctor I'd seen before today left me feeling skeptical about whether I was really pursuing the right course of action. Turns out that my suspicions were correct in a lot of ways (Side note - One big lesson I'm learning is that when you and your doctor disagree, trust yourself!).

Turns out that the mediastinoscopy (performed by a general surgeon) was the wrong procedure - it's too hard to get to the tumor and extract a good sample. It also turns out (man, I'm over-using that phrase tonight aren't I) that the needle biopsy (performed by a radiologist) is also the wrong procedure (something I sort of already knew). The right procedure is a parasternal incisional biopsy (performed by a thoracic surgeon). Basically, they make a small incision in the chest right between the ribs. Theoretically, you could do it on either side of the chest, but for fairly obvious reasons they're opting for the right side of the chest (opposite the heart). Rather than clawing at the tissue with a scope, they'll cut out a nice piece of the tumor, just like slicing a nice piece of cheese.

So, no needle biopsy tomorrow. Instead, I'm having the incisional biopsy done on Tuesday afternoon. The invasiveness is about the same as it was for the mediastinoscopy. In other words, it's outpatient surgery although it's possible I many end up staying overnight at the hospital, especially given that the surgery won't happen until pretty late in the day. I feel good about it because I know we're doing the right thing this time.

I'll write more about my oncologist later when I have a little more time and energy, but he's pretty much awesome. A few things worth mentioning: Hodgkin's does appear to be the culprit, though it is possible that it's a form of non-Hodgkin's. Assuming it's Hodgkin's, it'll probably be about 4 months of chemotherapy (the ABVD regimen, for those interested in more detail) followed by tight, focused radiation on the mediastinum where the tumor is located. My oncologist doesn't waste time, so the chemo will probably start shortly after I'm recuperated from surgery. Between the chemo and the radiation, we should be able to nip this thing in the bud.

The most exciting news, however, is that the itching is likely to go away after the FIRST TREATMENT! Glory, Hallelujah!! I can't convey in words how excited I am about that. I think Skye is almost as excited as I am. Poor thing, my inability to sleep has interfered significantly with her ability to sleep. Hopefully soon, we'll both be sleeping normally again.

Speaking of sleep, I'm feeling like I might be able to get some if I try right now, so I'm outta here...goodnight.

Updates - Fast and Furious

Just got off the phone - they squeezed me in for an 8am biopsy on Friday morning. Really glad that I don't have to wait until next week. I told you this blog was the place to be for the latest updates...

Medical Mulligan?

My detective efforts yesterday weren't completely in vain. Turns out my phone calls lit a fire under everyone and they managed to give me a final answer yesterday. Unfortunately, the final answer was that they don't have a final answer. In other words, the sample they took wasn't enough in quality and/or quantity. In other words, I get to have another biopsy.

The surgeon recommended a CT-guided needle biopsy this time, which should make it easier to pinpoint the tumor during the procedure, thus resulting in a better sample. The CT-guided biopsy is done by radiologists, not general surgeons. We scrambled yesterday to see how soon this procedure could be done because I'm having my first meeting with my oncologist tomorrow (Thursday) and want/need to have some results for him so that he can prescribe a course of treatment. As of yesterday evening, we couldn't pull the strings to make it happen.

I did talk to the oncologist this morning, however, and he still wants me to come into tomorrow despite not having an official diagnosis. He's going to handle everything from here and set things into order - I have no doubt. It'll be nice to finally get some information and make some progress. Until tomorrow...