The Hodgkin's Race: May 2005

Friday, May 27, 2005

Remission

I got my PET scan today. My dad called to get results, and it's official...REMISSION. Truth is, I didn't expect any uptake on the PET scan because there wasn't any in December. To me, the best news is that there is no evidence of cancer WHATSOEVER. I was at least planning on having some scar tissue in my chest, but nothin'! I guess the ABVD misery was worth it!

I'm definitely having a drink-a-roo. In fact, I'm getting a beer out of the fridge this very minute.

Tuesday, May 24, 2005

Lots O' Good News

Done. Done done done. Finished last dose of Prednisone today. Now, I only take three drugs -- and two are allergy drugs in no way related to the "Big C." Yeah!

Have been doing a diet of only protein, fruits and vegetables. It's going well. I can now button my fat pants. A sad but accurate statement.

Have PET/CT scans on Friday. I'm not at all nervous because my scans in December were good. Plus, had many "sneak peek" scans during the whole Bleo mess, and the big tumor behind the mediastinum is much smaller. I'm excited to see that the suffering of ABVD was worth it.

In the meantime, I hope my body IMMEDIATELY starts to release the fat that Prednisone has forced it to store.

Monday, May 16, 2005

5, 4, 3, 2, 1...

Went to pulmanologist today. My lungs are pretty normal. The dry cough I experience is less and less frequent and could be a result of any number of things: Bleo, allergies, or even the fact that I am in the worst shape ever in the history of ever.

So, I'm down to 5mg tomorrow for 5 days. THEN, 2.5mg for 5 days. AND THEN, no more Prednisone!!!! Yippee!!!! 10 more days of bloated fatness. Wait, then I won't have any more excuses for eating like a Sumo wrestler... In 10 days, I'll have to stick to my post-chemo pledge to be healthy! Eeek!

Actually, I CAN'T WAIT!!!

Moderately Joyful in Mudville

It's always great to be here in Atlanta, but naturally, it's different without Mom. Normally, we'd hang out all day, but now, I'm here alone while Dad works. We've (sisters, Dad and me) cleaned out the "unsentimental" stuff from Mom's closets and have made many trips to the St. Vincent de Paul Society and the Goodwill. I also cleaned out the "games" closet that holds all of the games, puzzles, instruments, etc. that we played with (proper grammar: "with which we played") when we were little. It was fun to see all of that stuff, but also depressing as my family is not the same now as it was then. I do miss my mom a whole lot.

On top of it, it makes no sense for Dad to stay in this big house all by himself. It's too expensive and difficult to maintain. He's putting the house on the market in the next few weeks. Mom invested much of herself in this house and in her many gardens here. In fact, she was on a Georgia state garden tour! I know Dad wants to move but leaving this house will be like another death in the family. We've lived here for nearly 25 years. So, all has not been totally joyful since the end of chemo.

I am a bit joyful, however, as my hair is starting to fill out considerably. I do have to use a bit of product when I leave the house as it tends to stick up all over the place. Truth is, if this were my natural hairstyle, I'd really need a haircut! I'm lucky not to have lost it all and just hope it will grow in quickly. I am in great need to visit real hairstylist and create a decent plan as it grows back in. There isn't enough hair to plan with at the moment -- especially on the sides -- so I will continue to be patient and flatten the hair bits that "pop-up" with water and other products. Funnily enough, my eyebrows are filling in with many white blonde hairs. This is remarkable as I haven't had blonde hair (naturally, that is) since I was about 3 years old. Who knows what I'll look like at the end of the summer?!

I'm also happy to report that my energy level has improved dramatically. Walking and exercising are still pretty brutal, but the regular around-the-house stuff actually feels pretty darn regular!

Another happy report is that the number of medicines I take is dwindling by the moment! Naturally, I am most excited about my liberation from the Prednisone. Getting rid of that bad boy has an additional benefit! Have I mentioned that I am one gassy woman? (My poor husband. As if I needed to be more "humanized" in my husband's eyes! I look forward to keeping all of my bodily gasses to myself...) The point is, I have to take Nexium, Protonix or Prilosec with the Prednisone as steroids shred your GI tract. These GI drugs have kept me relatively "unshredded," but man, do they make me bloated and gassy! Holy moly. Good news is, no more Prednisone, no more GI drug protection needed. Bye bye!

I still check other Hodgkin's blogs and websites regularly. I'm struggling about when and if I should "move on" and if, when and how I should put all of this behind me. Of course, my experiences with HD are all tangled up with my grief process. Disentangling the mess will be, I think, quite complex. I hope that good health and increased energy will help me in my "unensconcing" process.

Sunday, May 15, 2005

The Final Countdown

10, 9, 8... I'm down to 10mg. What a thrill. Truth is, I can't tell too much of a difference, although my face is getting nominally smaller. I go to pulmanologist tomorrow where I imagine she'll give me the "go" to go to 5mg, and then DONE. I am a big steroid balloon, and I'm ready to deflate!

I've been in Atlanta with my dad for about a month. I was planning to get final scans here, and since I had port placement here, I was going to get it removed here as well. It turns out, we're waiting 6 weeks for first scans, and at some point it would nice to see my husband. :-) So, I'll get scans and port removed inVA.

All of this should happen right around my birthday which guarantees me good news, right? Truth is, I don't feel all that worried about this set of scans, but I have had a couple of recurrence stress dreams just in case. I wonder if I'll have them my whole life?

Wednesday, May 04, 2005

I'm in the Teens!

My Prednisone dose is finally in the teens! 15 mg! Yippee!

I had GI tests last week. (Esphogial scope -- yuck. However, the nurse, Kevin, who put in the IV WAS a totally hottie. And, I've got a HUGE bruise on my arm to remember him by...) The scope showed a healthy digestive tract despite my many GI symptoms. Sweet relief.

Then, had another set of PFTs (Pulmonary Function Tests) done. They're not totally normal but are normal enough for me to lower Prednisone dose.

With all info in, we're in full steroid taper. I am so excited to start looking like myself. It's yet another step towards a "normal" life.

Here's to the official de-puffing of my face...and the rest of me!

Monday, May 02, 2005

Other Hodgkin's Sites

I have searched and searched for interesting blogs and sites related to Hodgkin's. I'm still amazed by how few there are. Most are written by people who are currently in treatment. There are very few, however, written by long-term survivors. I guess that's a good thing? Perhaps there are many long-term survivors out there who -- once they're finished with HD -- they're finished!

It's interesting. Some people make their cancer battle an innate part of who they are. They go to every walk, research every drug and treatment, crunch the numbers and stats, go to support groups, and remain in full battle mode. My mom -- even though cancer was an enormous and invasive part of her life for nearly two decades -- never let cancer become WHO SHE WAS. Instead, it was almost incidental, a nuisance. It was like the guest who visits and never leaves. She just wanted it g-o-n-e. "Pack your bags, buddy, and GET OUT!" I want cancer to be an "incidental" part of my life, too. I feel fortunate that I have HD because it is a cancer that is more likely to be -- as my oncologist says -- "a bump in the road you'll barely remember 20 years from now." He even compared it to looking back on my high school graduation! My school did a lymphoma walk in my honor. I got interviewed by the local paper. At the end of the interview, the author said, "You sound sort of 'ho hum' about having cancer." I told him I wasn't exactly "ho hum"...

I'm trying to find some middle ground. I can't decide what I'll do when I get my scans in 4 weeks. I anticipate good news -- official remission. I wonder what to do then. Do I forget about all of this and move on with my life? It seems silly and unrealistic to be so cavalier aka "I had cancer, but that was just a bump in the road." Although I do fight the urge to say "done" and try to forget all of this as quickly as possible, I've forced myself to come up with some "lessons" (cheesy term), or at least "appreciations" that I can take with me as I regain a sense of normalcy. (Regaining muscle tone will be nice too, in time.)

1) A renewed appreciation for the support of my family. Not only have they been kind and generous, but they're darn smart! They know their cancer stuff!

2) An appreciation for the power of medicine. The chemo drugs not only blew my mind and changed my body (almost entirely, it feels like), but they managed -- for now -- to kill elusive, rapidly growing mutant cancer cells. Wow. I love the people who imagined and then made this stuff! (And, I love reading about the new schemes they're working on!) I guess I also have to acknowledge the evil Prednisone. It sure made me feel better, but now it's just making me fat, and the fact I can't just drop it (what's a little adrenal failure among friends?) out of my life is amazing.

3) An appreciation for health and just plain feeling good -- or not noticing my body at all! I pledge never again to be lazy, or eat crap, or take for granted that this body -- swollen as it is presently -- is all I've got. I'm not going to turn into a macrobiotic, self-obsessed, nutrition junkie, but I am going to be more conscious of the foods I eat and the activities I do. I've decided -- now that I've FULLY atrophied -- I have an opportunity to reconstruct! Who knows? Maybe I'll end up with a yoga power body like Madonna!

But what else? Do I take these lessons for myself and move on? Do I continue writing this blog with the hope that someone who is up late and worried about their HD reads it and feels better about their own diagnosis? What if I recur? Do I want the aforementioned person reading about ANOTHER victim of the HD relapse? I can't decide what to do. Many weeks ago, I found a site written by a guy who's been in remission for 3 or 4 years. (Could I find it now? Of course not!) He doesn't write often now, of course, but it was encouraging to read his monthly/annual posts that continued to reaffirm his remission. I hope I'm lucky enough to be like him. In the meantime...

Here are some of the other sites I've discovered.

http://forums.webmagic.com (Once you get to this site, click on "Lymphoma." There are two "communities" there. One for Hodgkin's and one for Non-Hodgkin's.)

http://journeytobabeland.blogspot.com

http://alesecoco.org

http://scatterbrainer.blogspot.com

http://rubytue.blogspot.com (AND, I just discovered she goes to the same oncology group I do! Small world, huh?)

http://anti-hodgkins.blogspot.com

http://www.lymphomainfo.net/lymphoma.html

http://maureenmcq.blogspot.com/

http://www.pamelaclark.info

http://www.caringbridge.org/ny/tianna