The Hodgkin's Race

The Scare

2006-04-02T22:43:00.000-04:00

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.

Back to Work

2005-08-31T21:41:00.000-04:00

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...

In a good mood? I can't tell!

2005-08-19T13:15:00.000-04:00

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!

Update

2005-08-05T13:44:00.000-04:00

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!!

Haircut

2005-06-18T16:09:00.000-04:00

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.

Wowza

2005-06-16T15:02:00.000-04:00

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!

Emancipation

2005-06-14T23:30:00.000-04:00

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...

Am I forgetting...

2005-06-13T00:19:00.000-04:00

what's important?

When I first started looking around for Hodgkin's websites and the like, I found one message board. I was so excited...until I started reading. I was annoyed by the people because they were content to complain, and about the wrong things! There was this extensive discussion about weight gain and how depressed all of these people were that they couldn't lose the weight they had gained while on chemo. So here I am, sick, alone, up in the wee hours reading people complain about something as silly as weight gain! Weren't they happy to be cured? Weren't they relishing the good feelings, good health and ENERGY they got after finishing chemo? Didn't they remember?!?!? I was so irritated and angry.

Forward to today, many months after I first came across the offensive cyber discussion. Since then, I have gained nearly 20 pounds from my friend Prednisone. My husband and I are going to California for 3 weeks at the beginning of July, and I am obsessed with the idea that I haven't weighed this much since college. I am so frustrated because I have been working out diligently. I also feel badly about my hair. I was soooooooooooo lucky not to go completely bald, but I still feel depressed when I see all of this short hair going every which way in the mirror. I will have to cut it before we go to California even though all I want it to do is grow, grow, grow!

I can't believe I am upset about such vain, stupid things. Have I learned nothing? Maybe this is a sign I'm "forgetting" about chemo? I have to get over it. I am in remission. I am feeling stronger every day. I got the best health care in the world. What the fuck is my problem?

Get over it!!!! Bad, sniveling me!!!!!!!!!!

Port appointment

2005-06-10T00:27:00.000-04:00

How could I forget?!?!?!

I'm getting my port out ON MONDAY!!!!!!!!!!!!!!!!! Yippee!!!!!!!!!!!! Hooray!!!!!!

I loved having it for chemo (I felt AWFUL for those patients who just got stuck and stuck and stuck in the chemo room as nurses looked for good veins...), but getting it removed symbolizes true emancipation from treatment.

I will finally have my body back! Maybe I'll actually remember what sex is like! (Goodness, I'm a Catholic, I can't believe I wrote that...)

Wait, I have muscles?!?

2005-06-09T00:13:00.000-04:00

I have started walking and/or going to the gym everyday. It is a most wonderful feeling as I remember lying on the couch for weeks and weeks dreaming of physical activity. I live in a hilly neighborhood and try to pick the routes that will take me up as many hills as possible. Oh mama! It hurts like a mofo. I have that sore feeling you get from working out too hard. I LOVE that feeling! Amazingly, I am getting very sore from some very slow walking! Oh well, I know my stamina and conditioning will improve one of these days.

I joined Curves today. It's a gym for women. Actually, it's not really a traditional gym, but one circuit that you go through twice for a total of 30 minutes. Going to Curves actually reminds me a bit of chemo because I am the youngest person in there by like 30 years! :-) Of course, I'm not working now and go in the middle of the day, so it makes sense that it's me and the retirees.

Went to oncologist for my PET follow up appointment. We discussed the good news, and he answered some of my questions about fertility, vitamins, going to the dentist, etc. I was practically elated when we left the office because I've really started to believe that I may have kicked this thing. (Incidentally, I got physically nervous just from writing that down!) For the last half of chemo I became nearly obsessed with the idea of recurrence. Now, I think about it very little. Is it denial? Or, is it the way I should be thinking now?

I went to the pulmanologist on Monday. My PFTs were below average which is quite confusing because my lungs feel totally normal. I distinctly remember what Bleo toxicity felt like, and I don't feel any of those symptoms. We're thinking the low numbers are a result of either or both anemia and allergies. Plus, they chart the PFTs against an average -- you know, woman of certain height, weight, etc. -- hopefully my current, "bloated" state threw the averages off.

There have been some interesting threads on the Hodgkin's board I read. I've been doing a lot of thinking about heroes, empathy and "it all happened for a reason." I'll write more when I figure it out. I know you're waiting with baited breath.

Speaking of, does anyone know how to check to see how many people read or check blogs? I saw that Blogger currently does not have a counter for blog templates, but I'd be curious to check it out...

Remission

2005-05-27T17:28:00.000-04:00

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.

Lots O' Good News

2005-05-24T23:44:00.000-04:00

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.

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

2005-05-16T22:08:00.000-04:00

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

2005-05-16T00:09:00.000-04:00

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.

The Final Countdown

2005-05-15T23:53:00.000-04:00

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?

I'm in the Teens!

2005-05-04T13:08:00.000-04:00

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!

Other Hodgkin's Sites

2005-05-02T20:14:00.000-04:00

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

http://stephaniechampion.blogspot.com/

http://h20fowler.blogspot.com/

http://quimio.diaryland.com

http://news.surfwax.com/health/files/Hodgkin's_Disease.html

http://heatherandbob.blogspot.com/

http://www.tgeneva.com (Go to the Captain's Log for her Hodgkin's bloggings. Thanks Ruby!)

http://laulaubeesspot.blogspot.com/

http://blankpallet.blogspot.com/

http://www.preservationrecords.com/blog/

What now?

2005-04-20T02:15:00.000-04:00

I am terrified of recurrence. I know the Hodgkin's success stories abound, but as I wrote in the beginning, you don't read much about them on-line. I know my five year survival rate is anywhere (depending on whom you ask) from 77 - 88%. The truth is, though, if I got a 77 on a test, I'd be bummed!

When my mother became seriously ill this past summer, I learned a valuable, and frankly, practical lesson about living in the moment. If I continually focused on the fact that this would be my mom's "last" August, or "last" time eating Chinese take out, or "last" conversation, I would've been continually hysterical. So, I really learned not to think about the future at all, and it made surviving the last few months of my mother's life bearable.

Ironically, now that I'm done with my treatments, I'm finding it more difficult to live in the moment. This is probably because I've spent the last 6 months waiting for the present to pass me by -- and quickly. I'm reciting the serenity prayer more often in order to get my "living in the moment" attitude back.

There's definitely a connection between positive thinking and cancer. I'm working on it. On the one hand, I know I should visualize, meditate, and "think positive." On the other hand, it's only natural to let my mind wander to the "dark place." I read a very interesting book called Healing and the Mind by Bill Moyers. It addressed the fact that many cancer patients feel guilty about having cancer at all -- some even thinking they "thought" their way sick. One doctor interviewed for the book agreed that cancer patients put undue pressure on themselves. She stated that all emotions are normal, even the negative ones. The doctor went on to say that the only "harmful" emotions experienced by cancer patients and survivors are those that are a) unexpressed or b) obsessed over.

So, I let my mind wander to the dark place, but visualize and think positive thoughts just in case... :-)

I will continue to update with final PET scan (in one month) and removal of Port. Yippee!

Halleluiah!

2005-04-20T01:54:00.000-04:00

Done. I had my last chemo on Monday. For months and months, I imagined how I would behave at the last chemo and pretty much figured I would cry tears of joy the whole time. I didn't. In fact, it was almost like every other chemo day. I could tell when the Decadron steroid "kicked in," and I couldn't watch when the nurse pushed the nauseatingly red Adriamycin. We did take pictures, though. I've pledged to look at them months from now when I'm feeling healthy and take that health for granted.

At the end, the nurses gave me a blue ribbon and a "graduation certificate." I plan to frame it and put it under my "real" academic diplomas by my desk in my classroom.

Joys of Prednisone

2005-04-20T01:29:00.000-04:00

I've been on Prednisone for 2 months. (I know, the dates don't match up on the blog. Truth is, I "lurk" on about half a dozen Hodgkin's blogs, and one sleepless night, I decided to write one myself and just get it all out!) The gift of energy remains the same, but, unfortunately, I've been the recipient of some other "gifts" as well.

1. Weight gain. My face is getting rounder and rounder. I'm definitely someone who could be described as having "beefy cheeks." I've gained about 7 or 8 pounds in the last two months. It's the weirdest weight gain ever, though. It's all in my face, shoulders, neck and belly. With all of my inactivity since my diagnosis, I would actually say that my legs, butt and arms are skinnier. My sister -- who's a doctor -- says that the weight gain I describe is largely water weight and some of it should drop off easily once I'm totally off the roids. I hope this is true, but suspect that I will actually have to "diet" when this is all over. Jeez.

2. Hunger. I am ravenous. I can eat my husband under the table. And, it's not all boredom eating or emotional eating. I can honestly say that about 3 or 4 times a day, I MUST eat. I have legitimate hunger pains. Luckily, though, many of my food cravings are for healthy foods -- punctuated by the homicidal desire for a corner brownie or two.

3. The GI problems. It started with some nausea and increased problems with reflux. Then, it moved on to increased problems with heartburn and now thrush! Yippee.

I am eternally grateful for the energy the Prednisone has given me, but I'm tired of its "gifts." Now, whenever I visit my pulmanologist, I negotiate the taper. (Once you start the Prednisone, you're making a committment. You have to taper off of it over a long period of time. It's the middle of April now. I don't plan on being roid free for at least 6 more weeks. Yes, this too will pass...)

Bleomycin Toxicity

2005-03-31T21:23:00.000-05:00

After cycle 4, I really got sick. Fall down sick. I was getting increasingly breathless -- even when walking short distances. I had zero energy. The alarming thing for me, though, were increased fevers over several days. I never get fevers. The doctors tell you to expect your temperature to spike a bit the couple of days after treatment (a side effect of the Bleomycin), but after a Monday treatment, my temperature was still spiking on Saturday. Plus, I had a persistent, dry cough, breathlessness and heaviness in the chest.

I went to the oncologist, and it appeared that, yes, I was experiencing a toxic reaction to the Bleomycin. After a CT scan of the chest, chest X-ray, trip to the pulmanologist, trip to the respiratory clinic at the hospital and a bronchoscopy, my toxicity was confirmed.

I was forced to skip my next treatment (disheartening) in order to get things under control. We also took the Bleomycin out of my ABVD regimen and started me on high-dose steroids. The doctor says this decreases my survival rate by 1-2%. I have also heard that it increases my chances of recurrence by about the same percentages. Prednisone, however, does have anti-tumor properties. I asked my oncologist if the Prednisone could be considered an anti-tumor agent, and he said yes. I wonder if its part in the protocol does anything to those percentage numbers.

So, here come the steroids!! I was started on 100mg of Prednisone a day. Wowza. I could tell the difference immediately. To begin, I became just a bit nutty. (Bringing me to my most classic doctor moment. As the doctor left the room, she said, "Be sure to call me if you start to hallucinate.") In the few hours following a Prednisone dose, I found it difficult to hold a thought in my head. I also had trouble understanding some things I read.

The silver lining.
On the OTHER hand...the steroids gave me energy. For the first time in months, I was able to walk, do things around the house, and just be up and around. This artificial burst of energy was invaluable to my spirit and with all of the side effects of the Prednisone (I've had many.), I'm almost happy to have "had" to take them. It's helped me get through the last two cycles of chemo.

The Blues

2005-03-31T21:18:00.000-05:00

Cycles 3 and 4 were very tough. I had little energy and increased nausea. I was not bouncing back quickly. And, it was a cold, gray winter!

I also learned much about the power of the mind. The anti-nausea drugs available to chemo patients are incredible. When I first started treatment, one nurse told me that I wouldn't throw up once during all 6 cycles. I didn't believe her. Now, however, I know this fact is totally possible.

Despite finding a great anti-nausea cocktail, I did throw up. Every other Monday in the chemo room. It was anxiety and was the weirdest thing. I swear, I was able to tell and almost control when it happened. One time, I started to feel it coming on, but waited for the nurse to remove the IV from my port so it would be easier for me to "race" to the bathroom. My vomiting was totally psychological.

I really hate chemo. I hate the way it makes my body behave and smell. I'm tired of the chemicals!

Needless to say, I think you can expect to experience some depression half-way through. As you start to feel sicker, the hill of chemotherapy seems harder and harder to climb. Let yourself feel depressed, and try to coast through it. I know from experience that as time passes, you will start to feel better and see the light at the end of the tunnel.

Scans after the 2nd Cycle

2005-03-31T01:46:00.000-05:00

My oncologist says getting scans after the 2nd cycle is a good prognositic indicator in determining the long-term effectiveness of the chemo. He was looking for two signs when he sent me to get a PET scan in December. He looked for a significant reduction in the radiological uptake of the tumors as well as a physical reduction of the tumors as well. He was looking for a specific percentage of physical reduction, but, frankly, I can't remember what it was.

Anyway, I had great news. After two cycles of ABVD, my tumors showed zero radiological uptake -- ding, dong, the tumors were dead! Physically, they were at least 50% smaller, but they did still show up on the scans.

So, Tip: Ask your doctor if he/she wants you to get scans after you've completed your second cycle of treatment.

I'll be honest, though, the news was great, but I didn't feel so great. The chemo treatments were really starting to get to me. It was taking me nearly a week to recover from each treatment. I was becoming increasingly fatigued, my hair was falling out in droves, and the idea of 4 more cycles -- treatments 'til April -- blew my mind.

Hair Loss

2005-03-30T01:37:00.000-05:00

My first oncologist told me to expect to lose all of my hair. So, I thought, if I'm going to lose it, I'm going to have some fun! I dyed it about 9 different colors in 2 weeks -- finally ending up with bright pink hair. I was going for my version of the Gwen Stefani look. Then, I waited for my pink hair to fall out in droves. It didn't.

I had steady hair loss throughout the chemo, but I didn't lose it all. Instead, I would say I've lost about 60-70% of my hair. Another oncologist told me that only about 75% of his ABVD patients lose their hair. He also added that young men with thick hair sometimes lose so little hair that you can't even tell they're getting chemo at all. So, prepare yourself to lose it, but know that some of it might stick around!

I did end up having to get a shorter haircut, though. My hair just started looking creepy and scraggly. I had shoulder length hair, and although it's weird to be balding, the practical concerns were that there were long hairs EVERYWHERE. The hairs that got stuck in my clothes were especially annoying. So, you may want to cut your hair short sometime during this process. And, get a screen for your shower drain. Because of that, we've only had to fight one major drain clog here.

If you do lose your hair, please know that my mom lost most of her hair with one chemo treatment and completely lost it two other times. It always grew back. It was a bit curlier, but otherwise it came back soft and beautiful. She was comfortable without her wig about 6-8 weeks after her hair started to grow back. My hair is very short with a lovely smattering of bald patches. I don't wear a wig, though, and only wear hats if my scraggly hairs are unusually unruly. My hair used to grow very very fast, a trend I hope continues when this is finished!

Chemotherapy Tips and Other Cancer Musings

2005-03-30T01:24:00.000-05:00

I started this blog late in my treatments. So, having had about 5 cycles under my belt, I feel I've amassed some good knowledge and experience to share. Here are some of my tips and musings.

1. Vinblatine/Velban can cause extreme jaw pain and headaches. I only experienced this pain after the first treatment. Your doctor will give you whatever pain med you require.

2. ABVD is an EXTREMELY constipating chemotherapy. (The Neulasta shot also constipates!) In the beginning Senna-C, a natural laxative, worked pretty well for me. After a while, however, it wasn't as effective. I have found Colace to be a decent stool softener. Truth is, good hydration is the best medicine. During chemo weeks, I have trouble drinking lots of water, so I try to make up for it during non-chemo weeks. Glycerine suppositories can make your time in the restroom more comfortable. {Post chemo note: I never fully overcame the constipation thing. It was unbelievably painful and demoralizing. (I'd think, "Now, I can't even do THAT!") Do your best not to force too much in the bathroom as that can cause hemorroids. I had some anal fissures (little cuts) and bleeding, but that went away almost immediately after chemo was over.}

3. Put numbing cream on your port 60 minutes before chemo. Really hunk it on there. Then cover port with plastic wrap and keep it wrapped til you get to chemo.

4. I drink a lot of decaffeinated iced tea. Plain water makes me feel nauseated, and iced tea is a good hydrating substitute.

5. TREAT YOUR NAUSEA IMMEDIATELY. There are a million anti-nausea drugs. I have found Phenergan to be quite helpful. It does, however, make you sleepy.

6. I started to feel overwhelmed and depressed right around the halfway point. Once I got closer to Cycle 5, my spirits started to lift. Remember a good thing about Hodgkin's -- you probably have a finite number of chemo sessions. Keep your eyes on the prize and take it easy on yourself if you get frustrated and depressed in the middle.

7. Since I work at an elementary school where germs abound, my doctors are not letting me work during chemo. I am now on long term disability. You may want to research this option if chemo gets too tough for you. And, for those of you who are able to work during your chemotherapy -- kudos to you. You should be truly proud of that accomplishment. If you are a full-time mom and chemo patient, you are a true superstar.

8. The Neulasta shot can give you bone pain. This happens because your bone marrow is very busy making new blood cells to release into your bloodstream. As a result, your bone marrow becomes "swollen" with immature blood cells. Your "swollen" bones can feel quite sore. I've found that Tylenol effectively abates the pain.

9. Hunger can increase nausea. Make sure you have foods in your refrigerator that you can easily heat up in the microwave. We cook the weekend before each chemo treatment. The Barefoot Contessa has a wonderful recipe for chicken stew with biscuits. This meal has been a lifesaver for me on days when I am tired, nauseated and just need food. I also have enjoyed eating hearty soups.

10. This brings me to the next tip. Don't count on the "silver lining" of the chemo diet. I expected to lose those final 10 pounds of college weight, but it hasn't happened. There are weeks where I lose lots of weight and weeks where it comes on. In my 5 1/2 months of therapy, I have only lost 2 pounds.

11. Exercise when you can. In the beginning, I took long walks every day. Now that the fatigue has really gotten to me (and since I've had toxic reaction to Bleomycin), I am not able to exercise much. You can call me the human veal. I truly miss the physical activity, so pursue it as long as you can!

12. Read all on-line information (including this) with a grain of salt. I check most of the "hard core" statistics or concerns with my doctor. I find it particularly noteworthy that most "cured" HD patients do not share their experiences or stories on-line. On the other hand, it has been so interesting for me to read other people's blogs and comparing their experiences to my own.

13. Get ready to become a wild animal. I have NEVER had such sensitivity to smell. Smells I never noticed before totally get my attention now. One time, I smelled my husband's mouthwash when he was in another room. And -- sorry to be graphic and gross -- during chemo week, I find the smell of my urine to be particularly chemically-laden and offensive.

14. I'm not into the "everything happens for a reason" philosophy. This reasoning makes you wonder what you did to deserve the cancer! Just know that there is an end in sight and make sure never to take good health for granted ever again.

14. I have significant anticipatory nausea on chemo days. I get someone to take me to chemo and take Ativan, Phenergan and Emend treatment days. When it's over, I always end up taking a long, long nap. This is a good thing on a day when -- let's face it -- you're not that interested in being awake anyway.

15. Biotene is a good mouthwash to prevent mouth sores. I had hardly a one!

16. In the chair, sucking on hard candy didn't work for me, but chewing gum did.

17. Ask the nurse to push the saline slowly if the taste of the saline grosses you out. Pushing it slowly really works.