Sunday, April 02, 2006

The Scare

Update first: Work has been incredibly busy, and I've started grad school. I'm overstimulated and overworked. I am also thinking about the cancer thing less and less. I was sure my life would be totally different -- especially when it comes to diet and exercise, but that hasn't really happened, and I feel really disappointed in myself. As I approach my end of chemo anniversary, I am going to have start taking that part of my life more seriously.

On the whole, though, I would say I felt back to normal 6-8 months post chemo. It has been most liberating to be involved with the normal and not be consumed with thoughts of how I'm feeling physically. Also, my hair is coming in like gangbusters. It is darker (with much gray!) and curly, curly, curly. As it's gotten longer, it's a bit straighter, but it's still like a totally new head of hair.

On to the scare...

So, two months ago my dad calls. I had clean post-chemo scans and clean scans 6 months later in November. Initial reports showed that remission was alive and well. My dad sends them for a second opinion because even though they were clean, my thymus gland was a bit active, and he wanted to check it out. Several doctors looked at the scans and felt they were unusual and showed a possible recurrence.

We went to the Mayo Clinic for a full check up with a certifiable Hodgkin's expert. It was most comforting to meet with him as he really knew about all the “subtleties” of HD treatment that other oncologists can’t know just because it’s impossible to know everything about everything! The lighting up of my thymus gland turned out to be normal for a woman my age, but part of my tongue lit up. Many doctors looked at it and had that somber, we should biopsy it, look. Of course, all of this happened on a Friday, but the biopsy wasn't until Monday -- leading to the darkest, most frightening weekend of our lives. I had always felt Hodgkin's -- for a cancer -- was an ok diagnosis. It was the treatment that was so awful. For a few days, I started to appreciate how scary a potentially grave diagnosis would feel. It all turned out fine, but I can't let the trip go. Clearly, I have to learn something from a scare so profound.

Wednesday, August 31, 2005

Back to Work

Wow. Wow wow wow. I went back to work on Monday. It's been distracting which is a good thing, but, man, I have never felt this tired -- EVER. It was funny. On Monday, I fell asleep with my laptop in my lap!

Here's to feeling stronger and stronger as each month passes...

Friday, August 19, 2005

In a good mood? I can't tell!

So, I'm feeling pretty good but not full of vim and vinegar. I think I've reached the plateau my oncologist told me about. She said I'd have this surge of energy after finishing chemo and about 4 months later, I would just sort of level off. I'm definitely in the "level off" stage and am feeling a bit nervous about how tired I'll be when school starts. I haven't been sleeping all that well, so that might be the cause of any fatigue.

I've fallen off the exercise/good eating band wagon a bit. Tom and I have been traveling an incredible amount this summer. We left for California on July 1 and were to return for the balance of the summer on July 17. Flash forward -- I have only been back home for a couple of days. I was planning on taking the month from the middle of July til now to rest and nest, work out, set a healthy eating/exercising schedule for myself, decompress -- all in anticipation of the new school year. Of course, things don't always happen as you plan. Did I mention that my dad broke his leg, and that's why I was in Atlanta for nearly 3 weeks? So, he's in pain and really pretty debilitated, and here I am complaining about how being home threw a wrench in my plans and loused up my summer. Nice. Selfish me. I swear, my whole life I've wanted to be a parent. I better learn to handle change in a healthier manner.

Emotionally, I'm more up and down than normal. Before all of this cancer craziness wreaked havoc on my life, I was nearly always happy, positive and fun to be around. Seriously, I could count depressing, unfriendly, moody days on one hand. I'm much moodier now. In the last few weeks, I've been taking some of my bad moods out on Tom which is wrong wrong wrong. The magnitude of Mom's death continues to hang over me. It's deeply depressing to know that the mourning will never end, and the pain of losing her may change but will never go away. Plus, I have that post-chemo vicious cycle of guilt. I am in a bad mood, and then feel guilty that I'm giving myself bad "vibes" or something and those "vibes" are going to cause me to have a recurrence. Lately, I've been certain that my stress is giving me cancer. Some days, I swear I can feel my cells mutating. This, of course, is ridiculous, and I've got to break the cycle or I'll go nutty.

Although I absolutely am NOT ready to return to work, having that schedule and distraction will probably be really good for me. Plus, I'm pretty sure I'm going to make an appointment with the preist who married us. I haven't seen him since the WEDDING which in Catholic time equals many years in Purgatory, but I do feel I need some spiritual guidance for resurgence. EVERYTHING in my life was thrown into upheaval this year. It's hard to be normal after all this abnormality.

Gee, I sound so depressed! Truth is, I'd say I'm in a pretty good mood. Huh. Then again, if you asked me, I'd still say I was a healthy person, too. :-) Go figure!

Friday, August 05, 2005

Update

Sorry to not have posted for so long. I've never been a journal-keeper, and I can't really decide what to do about this blog now that the active cancer treatments are over. Truthfully, I just see myself posting with successive test results. That said, here are my thoughts.

My (albeit limited) post chemo experience has been interesting. I made all of these grand goals of ways to change my life; but as I've started to feel better, I find that my life is pretty much the same as before. I continue to be in the full conundrum I've discussed many times on this blog. (In fact, I'm sounding a bit like a broken record!!) Here it goes again.


I want to forget and leave it all behind, but I have been lucky to beat this thing and feel I have an obligation to do something about it. What that is, I'm not sure. I will try to be a better person, try harder at work, etc. Who knows? Shouldn't I strive for those "improvements" anyway? In the meantime, an oncology nurse in Atlanta has invited me to lobby members of Congress on behalf of the Community Oncology Alliance. That sounds interesting, and I'll definitely pursue it.

I have some guilt that I'm not more transformed by the experience, but as I reflect on it, I don't think this is a totally bad thing. To me, "beating cancer" can also be defined as an experience that doesn't totally transform your life, but rather one you live through and leave BEHIND. My mom battled breast cancer for 18 years, but I know she would hate being remembered as a cancer patient. Some of my most vivid memories are of her last, awful days, and I work hard to remember that those days are not the best example of who she was as a person. In her life, cancer was a nuisance, not a positive influence giving her more clarity. To me, allowing cancer NO influence may be the greatest victory.


I have been either walking or going to Curves regularly. I still get tired easily, but stay motivated by forcing myself to remember how I felt in say, February. Truth is, I'm not noticing any drastic improvements in my stamina when I work out, but my body is changing bit by bit. I'm starting to notice more muscle tone and my clothes are fitting me better. I was very discouraged for a while because even with healthy eating and dieting, I was staying at the same weight. I have since found out that chemo actually destroys your metabolism. I'm trudging along trying to "rev" it back into shape.

My hair is growing like wildfire. It seems much thicker than before and curlier. Everyone tells me that they think my hair looks cute like this, but it drives me bonkers. I feel like I have a white girl's fro -- DEFINITELY not a good look. Gravity, please, do your thing on my hair!!



Saturday, June 18, 2005

Haircut

I got my hair cut yesterday. This was my first "real" haircut since all of this began. I also got my eyebrows waxed. This may be too much information for you, but it's a milestone. Things are finally getting so hairy that the hair needs to be controlled. YEAH!

Now, all of the hair on my head is exactly 1 inch long. He had to cut a lot, but now things are under control and my hair will grow out evenly.

My plan is to get it cut again before Christmas.

I'm finding that I'm leaving a lot of this cancer stuff behind me. Besides my dietary efforts (at least 9 servings of fruits or vegetables per day), I'm not reading about cancer or thinking about it at all. Instead, I mostly focus on working out, losing weight, and just reconditioning and strengthening my body.

Thursday, June 16, 2005

Wowza

I went to school for first time yesterday. I have never felt so self conscious in my life! I got lots of hugs and attention which was nice but sort of weird at the same time. I decided after about 10 minutes that there was NO WAY I was going to the kids' graduation next week. I know I will also receive lots of attention from parents. I want to see them because they've been supportive, but all of that hullabaloo will be bad because (1) I don't want to take attention from the kids and (2) I feel so self-conscious about my appearance that I would be quite miserable. So, I will go to school on Monday to see the kids, and that's the end of the school year for me!

I was quickly ushered to the back corner of the library so the kids wouldn't see me. If they did, it would be too much craziness. (They are 6th graders, after all aka prone to craziness ANYWAY) I met with my team about next week's 6th grade graduation ceremony. Then, I worked a bit in my room and caught up with many co-workers. THEN, I had dinner with one of my friends and her new baby. I didn't get home until 11:08pm!

And, wowza, was I tired this morning. I feel like I've been hit with a truck. I still feel pretty good but am continually amazed that people work while being treated for HD. I feel like I need to recover from one easy day that didn't even include teaching. Whew!

Tuesday, June 14, 2005

Emancipation

It's out, baby!

The details (I copied some of this from a posting I put on the webmagic forum):

Last week, when I registered on the phone with the hospital, they said I was going to get twilight sedation again, but when I got there, the doctor said he was only planning on using lidocaine. The idea was a little creepy, but in the end was no big deal and much quicker.

So, they put me in a gown, roll me to the room, drape me so I can't see what's going on, cover me with lots of freezing alcohol (they "cracked" the container holding the alcohol to make it cold -- awesome!), and give me a big shot of lidocaine (a little stick and some burning, but no big deal). Then, he starts the incision. I felt some cutting at first (more uncomfortable than painful -- it felt like needle sticks), so he gave me a bit more lidocaine. I felt some pulling and pressure, and then it was over. I had given birth to a bloody, clear plastic port -- ironically 9 months tomorrow TO THE DAY that it was put in! Congratulations! He closed the incision (he only cut where the port stuck out, not by the incision in my neck), put sterile crazy glue all over it (yep, that's the truth), and then it was over. The best part was touching my neck and not feeling the catheter anymore.

The whole thing took maybe 20 minutes? The sutures took much longer than the port removal. I tried and tried to keep my port (apparently it's illegal being a biohazard and all...) and got the doctor to agree to give it to me, but the nurse in the room was a real "rule follower" and said that it was illegal for me to take it. I tried to plead charmingly saying it was my cancer trophy and that I had worked hard for it, but I was summarily overruled. I hate to admit it, but I was really annoyed. The only blight on the experience.

All in all a great day. No sedation hangover and no more artificial parts in this body! I would NEVER have done chemo without the port, but I'm happy to be...emancipated. Once the sutures heal, I'll really feel done with the whole thing. Getting the port out was the final nail in HD's coffin -- much more final than the last chemo.

I have to wait a couple of days before I can work out again. In the meantime, is it time to forget all of this and move on? Do I even continue this blog? What to do, what to do...