The Morning After

Alright, so after the pathos of the day, last night I had a big "Come to Jesus" talk with myself, and while all the truths of yesterday remain -- and probably will for a while -- today I got off my ass and did a couple of things. Fuck you, cancer, and the depressing, ugly-ass horse you rode in on. I'm not promising you won't read more miseryspeak from me tomorrow or another day -- but for today, anyway, I found a couple of ounces of energy to do some things that made me feel better.

I should have known it would be a good day when I discovered I'd lost another pound. Yippie-ki-ay to that! Over the last 11 days, my average daily calories are 1535, ranging on a daily basis from 1193 to 1953. During that time, I've lost 5 pounds! Obviously, lots of that is water, but that's normal and to be expected. I've been feeling so awful, just so depressed, about the 25 pounds I'd gained since the diagnosis in December. At first, it was as someone else said, like somehow getting diagnosed with cancer gave me carte blanche to eat ice cream, chips, and creamy pasta whenever I wanted. Then, once I started the steroids, my appetites increased. It's amazing that even as you're feeling queasy, you can still eat. In fact, sometimes eating can totally help you to feel better. It's an odd thing. And forget exercise. Really, just forget it. This chemo thing is just such a butt-kicker. But then, you might have already heard that from me or someone else. Hmm -- ya' think?

So anyway, in that big talk I was having with myself last night, I'd made a commitment to myself that I was going to just plain try harder to get in some frequent exercise. Ok, so I won't always be able to pull it off, but something's gotta give. My muscles are atrophying, my waistline's expanding, and I'm not reaping any of the psychological benefits of exercise. You all know what I know: exercise helps with depression, energy levels, and an overall sense of well-being. Well, sometimes it's a case of the horse and the cart, you know? You've got to come up with some juice in order to earn yourself some more juice! So today was the first day of Operation Improvement.

I worked out with Maya. Do you all know Maya? Here she is:


And here she is again:


Yep, that's Maya. For those of you not in the know, Maya is the virtual personal trainer of Yourself!Fitness, this extremely cool interactive fitness "game" you can "play" on your PC, PS2, or Xbox. Santa -- who, by the way, has a great rack and sometimes goes by the name of Lorraine -- gave her to me last Christmas. Santa purchased her for me prior to my diagnosis, after the dropping of some extremely broad hints. What with all the chemo fun, Maya sat in a box after an initial appreciative perusal.

So today I put on my sneaks and broke her out. I set my goals and took her fitness test - a workout in itself. We're talking jumping jacks (I thought I was going to pass out,) push-ups (of the girly variety for me,) sit-ups (can you say, "Good God!?") and a stretch for flexibility (I'm not as flexible as I was, but it involved sitting, something at which I now excel.) I checked my heart rate before and after. You enter all the results, establish your goals, set up your workout schedule, and off you go! If you do the exercise you committed to at the time you committed too doing it, you are rewarded with new workout environments and tunes. If you don't, Maya apparently gets all snide and bitchy -- and, according to the folks at the Y!F Forum, you tend to take this to heart and feel that you've failed Maya. Yikes! Apparently that Maya is no joke.

Anyway, you let her know what equipment you have (stability ball, hand weights, step, heart monitor) to work into the routine, pick your setting and tunes, and then she works you, adapting the workout to your previous performance and goals. You'll never have the same workout.

So, I did my first workout today, after the workout that was the fitness test, and thought I was going to die. I was already on the lowest difficulty level, and I asked her to reduce the difficulty still further -- ummm, turned out not to be a possible thing, but at least she could note it for the next time and maybe not try to kill me. It was cool! For now, I'm sticking to 15-minute workouts.

That puts me at 2-for-2! Pilates yesterday, and aerobics today! Itty bitty workouts, at 20- and 25-minutes a pop, but it's a start. Operation Improvement is well underway, and I'm proud of myself. How good it is to feel that I've accomplished something.

As for my feelings about being a Person With Cancer, see this piece of absolute brilliance for the words that speak for me. Louise commented here, expressing support and agreement on both my feelings of yesterday and the evil that is Decadron (nasty steroid,) and that prompted my visit to her absolutely amazing blog. She's just completely fabulous, so you should definitely check her out.

For those of you who commented so sweetly on my darkness, thank you. You're really just absolutely lovely people, and very patient with me.

The bitter and the sweet

I'm a mixture of emotions these days. One minute I'm happy as a lark, beaming beautifically at the world around me; the next I'm silently crying, despairing at the stretch before me while suffering in the present. It's confusing. And annoying. And, I guess, understandable.

You see, I'm in this weird sort of limbo -- knowing that the treatment's working and that each day brings me one pass closer to wellness, and at the same time just so physically miserable that it's hard to see past that. So it's a case of the mind vs. the body in a high stakes round. I'm trying to be stoic, resilient. I'm praying that my positive heart will bleed into my hurting body and tired mind, changing the greys into pinks and the browns into yellows.

In the great scheme of things, this struggle of mine doesn't amount to a hill of beans, since the days pass without note of my feelings. It just is what it is, you know? I do wish I could stop crying though, and that I felt stronger, even as I know I'm only going to continue to weaken before I can rebuild again. It's pretty childish, really, in an "I want what I want when I want it!" sort of way. It seems that I need to do better at embracing the Zen of it all, and accept the moments before letting them go.

Lorraine tries to cheer me in both little and big ways. Little things, like writing "Only 4 more!! You can do it!" on our calendar. Big things, like holding me and telling me how much she adores me and how proud of me she is, and asking me how she can help. I try to explain just how overwhelming everything is, how even the smallest act just seems so daunting -- and she sits quietly, listening, believing me and wanting to understand -- but you just can't really get it unless you feel this in your own body, I think. It really is just all so overwhelming sometimes. When it's not, it's simply because I'm pretending that it's not happening, and that I'm the same old Sarah I was before December 17th. There are moments I can almost convince myself, I'm that good. But not for long. I feel so guilty for not pulling my weight in the house, for not having a sex drive anymore, for not being as fun as I used to be. I feel ugly, and fat, and weak, and boring, and helpless, and dependent, and dim. My mind knows differently, but my spirit is so heavy. I know rationally that this will all pass, and that when this is behind me, I'll have been given the gift of increased self-knowledge and awareness, the gift of perspective, the gift of gratitude.

But it really is just a waiting game till I reach that point. Blah. I'm on the wrong side of hindsight.

In other news, it is my goal today to complete 20 minutes of beginner Pilates. I ordered "Heart of Pilates" after seeing an intriguing presentation during a PBS fundraiser. I like the level of instruction, and think the teacher's thorough attention to form will do me good. My muscles are atrophying, so I'd like to focus on strength, and I'm guessing this workout will be just the right pace.

I've also gotten back to eating pretty much on plan. It's a lot harder in the days immediately following treatment, so I cut myself some slack for a few days, twice a month. The rest of the time, I'm back to something very closely resembling my old weight loss plan. I'm using my Diet Power software again, and especially watching my fat, fiber, sugar, and sodium. I'm aiming for calories between 1200 and 1700, with an overall daily average of around 1500-1600. I lost 4 pounds right out of the gate, but am holding there at present, inexplicably. I'm hoping to gradually lose a little bit by the end of treatment -- nothing drastic, but a little sure would be nice. Right now I'm up 21 pounds since my diagnosis in December. I am certain that I won't gain more -- evil Decadron be damned!! -- but how sweet it would be to lighten the load just a tad. I have no idea how my metabolism will be after treatment -- for that matter I have no idea how it is now. I've heard different reports, so I'm just not sure what to expect. I just know I'll do my best, and try to stay positive about the eventual results.

Mia, I think it was you who asked if I'd have another treatment before going. Yes, indeedy. I will have #9 on my birthday, Wednesday, May 4. (We're moving it up one day so as to add a day to the vacation.) Then on Thursday, I'll get my Neulasta shot (the one that continues to make me feel like I've been hit by a truck even as it causes me to produce those coveted, much-needed white blood cells.) Very early Friday morning we fly. My energy by then will be so low that I'll need a wheelchair to get around the airports. But you know what? I'm going to be wearing a very cute outfit, since I did some major checking account damage in the form of online shopping! There really is a momentary pleasure in Retail Therapy. I promise that I'll have Lorraine take a couple of pic's of me so I can post them here (and also at my beloved Hodgkins Message Board.) That community plays such a critical role in my Hodgkins life. The people there are so amazing, and so positive. I thank God for that place, just as I thank God for the support I get from each of you here. Anyway, I should have those pic's up within a couple of days. One with hat, and one in all of my bald glory. I'm debating on whether or not I'll show one without make-up, so you can see me yellow and sans eyebrows and eyelashes. I'm thinking probably not on that one, but you never know -- I still lay claim to my woman's prerogative.

Oh! And I'll try to remember to post a pic of our magnificent little baby magnolia tree! God, I love that tree.

Sorry to be such a sad sack, and so self-pitying. Here's to a cheerier tomorrow -- one that's not all about me, me, me!

Chemo # 8 Down - 4 to Go!

I'm knocking them down, one by one. This will be quick, because I'm not feeling very well. The last two treatments have given me a lot of abdominal pain which the nurses say is caused by the Vinblastine. They spoke to me of removing it from the regimen, saying that some others have had to do so. I'm reluctant to do that -- I'd rather try to manage the effects than remove the cause. I just truly don't want to disrupt my treatment at all if it's at all avoidable. This isn't like the Bleo toxicity issue, which results in permanent lung damage. What I'm experiencing with the Vinblastine is, while awful, temporary. I'll talk to my doc about it at our next visit (May 5th, the day after my birthday.) Maybe she can offer some medication to act as a bandaid for the next 4 treatments.

Anyway, I just wanted to pop in quickly to let you all know that I live and breathe, and that I successfully stomped another treatment. I'm also back to eating on plan beautifully, have lost 4 pounds, and am trying to muster the wherewithall to do a 20-minute beginner pilates workout.

Oh yeah, and I still love Lorraine very, very much......and our magnolia tree is in full, fragrant bloom. 13 days till St. Maarten!! What gifts we get in life.

7 Down -- With the Mountain Behind Me

Whew! I write this as I'm waiting for a Percocet to take effect, so I'll beg forgiveness in advance should I trail off into nonsensical rambling!

FIRST AND FOREMOST: Your comments were so indescribably moving to me. Crying Sarah, crying Sarah....Lorraine saying, "Awww..." You guys are just freaking amazing. Your capacity for caring and support continue to astound me. I want you to know that I am very aware that I have been fighting with all of you beside me -- all of you within me. The knowledge of your caring has made me stronger and braver....and happier. I thank each of you from the bottom of my heart, with tears and a grateful smile. Thank you, thank you, thank you. What fine and loving people you are.

Chemo # 7 was a bitch. There's no other way to put it. It was horrible. That said, I still felt -- even as I was saying to myself and Lorraine, "Man, this is a bitch!" -- a big, flippant sense of "Oh WELL! Bring it on, ABVD! For as you hurt my good cells, I love you and will always love you for killing my Hodgkins." WHATEVER to any side effects! And yet it was awful. The problem was, offensively enough, debilitating gas. Yep, gas -- just so I could be further humbled by this experience.

I normally get a sudden onslaught of gas/bloating shortly after my Adriamycin and Vinblastine pushes (when they slowly inject the medicines into your IV as opposed to a steady drip IV.) So anyway, it's normally uncomfortable, but by no means excruciating. This time, I broke out into a cold sweat, got dizzy to the point of seeing spots and having trouble balancing, and the abdominal cramping actually made me CRY! Waves of nausea had me heaving into a bag, and I thought I was going to pass out. When I told the nurse about my pain -- there were just these rolling, clenching, breathtaking cramps -- she took my temperature and blood pressure. Both had gone way up. She gave me a high-dose chewable syth-something (like Gas-X) and an Ativan injection, and twenty minutes later I was asleep. Well, alrighty then! One minute I was saying, "I'm just going to put my head back and try to relax, sweetie," and the next I woke myself up snoring. Love that Atavan! It allowed me to continue with the rest of my treatment. Poor Lorraine was so worried about me; she hadn't seen me in pain like that, crying and saying, "It hurts so bad, honey," like a little girl. She got me cold, wet paper towels for my forehead, spoke to me softly of what it was going to be like in St. Maarten, told me how proud she was of me, rubbed my back until I swatted her off (that part was apparently not soothing to me LOL) and just held my hand. Don't you all just love her? Reminds me of one of my favorite bits of bathroom graffiti:

My mother made me a lesbian.
If I give her the materials, will she make me one, too?

The next day, I had energy! Life was good! I got up at a reasonable hour (like 10:00, I think,) went for my Neulasta shot (ouch!) and then went to Barnes and Noble to splurge on some books. (Ann Patchett's Bel Canto, Azar Nafisi's Reading Lolita in Tehran, Khaled Hosseini's The Kite Runner, Yann Martel's Life of Pi, and Betty Smith's A Tree Grows in Brooklyn, and a couple of Italian cookbooks.) I was pretty pooped when I got home, but rested for a little while, and then Lorraine and I went to a great Greek restaurant we love in Baltimore's Greektown. I always have their Spanakopita and Greek salad and Tzatziki. Yum!! When I was completely wiped out at 8:30, we returned home.

The next day brought bone misery, a misery which has remained to this moment. (Hello, Percocet!) I've recently learned that the Neulasta, a shot very effective at forcing your bone marrow into overdrive in white cell production, causes its pain when it is actually working, which can be at different points after your having received it. See, it can hurt a little, or hurt like a mother, and in my case it usually hurts like a mother -- but never in a very predictable fashion. It could fall on the Sunday after getting it on Friday, or it could be that Friday night, or it could be the following Tuesday. This was curious to me, until I learned that it only takes effect when it is needed; that is, when your white blood cell counts have dropped to a level wherein its presence is needed, and then mega-production commences -- and that's when you get the pain. I found this interesting, and am just in awe of the researchers who come up with this stuff. God bless them. If it weren't for these shots, I couldn't leave my house, eat any fresh foods, or fight any infection at all. I believe they're like $600-700 a pop, and I get them every two weeks -- so I guess I should bless Blue Cross Blue Sheild while I'm at it, eh?

The whole weekend was painful and hard. Beautiful, but painful and hard. I'm still have a lot of bone and joint pain from the Neulasta, pain in my neck and jaw, and my energy is for crap. Even as I'm feeling the worst I have so far, I am just so grateful for spring. My GOD, I was ready. Lorraine and I went to a new nursery and picked up a LOT of plants and flowers and herbs -- we love to do this every year. I grow basil, Italian parsley, sage, oregano, prostrate rosemary, spearmint, tomatoes, and strawberries. In previous years, I've grown more herbs, but this year's growing season I have less energy to care for them, so I went with just the basics. We also got a lovely gardenia bush (my very favorite flower, followed by freesia and tulips,) a jasmine bush, begonias, freesia, lucky clover, sunflowers, foxglove, ice plant, old fashioned bleeding heart, hen and chicks, catnip for the kitties, and allium. Oh yeah, and two hanging baskets of some amazingly beautiful and miraculous blossoms whose name I've forgotten. Our young star magnolia tree, just planted in our front yard last year, is heavy with at least a hundred blossoms, and both Lorraine and I are quite the proud parents, gazing at it and touching it with proprietary satisfaction. I am so happy that it has taken root so nicely and is ready to bloom so soon! Lorraine hated it in its gangly, adolescent awkwardness, but as soon as she saw all the big buds she warmed to it, and my selective powers were redeemed in her eyes. She's not big on either vision or patience, my Lorraine.

I'm hoping this headache and the rest of the pain passes soon -- shooting pains in my hips that make me stagger when walking or writhe if prone. I'm also looking forward to regaining a little energy. On this downward slope of treatment, it really is getting harder to sustain each session, and then to rebound afterwards. This experience with # 7 has inspired us to have some conversations about our upcoming trip, as we'll be flying out early the morning after my Neulasta shot, and two days after treatment #9. I now know that I will definitely need a wheelchair to navigate the airport. Even if I could make it (albeit slowly) -- why waste my energy in an airport rather than walking to the beach and playing a little in the water? Lorraine has agreed that if I need to rest in bed for a while, she'll still go down to the pool or the ocean on her own, rather than sitting by my side worrying about me. I hope she keeps her word on this and wasn't blowing smoke up my skirt when she promised me she'd go on without me in the first couple of days if need be.

I keep going out and looking at our newly potted plants, as well as those newly planted in our small garden and those already planted and just now coming back to life. I just feel such hope and gratitude and relief. The coinciding onset of spring and my remission have me brimming with happiness and anticipation. I take in the flowers' scents and feel like it's my new life I'm smelling. The birds feeding at our feeders are singing about the future, they're telling me they're alive and well -- and I am too. Every blossom, every bird, every butterfly, every frog -- ALL of them coming to our garden -- ALL of them are visiting me to tell me that they are happy and to encourage thoughts of Tomorrow and my health within that hopeful place.

What a gift I've been given. I pray that I get to keep it. I pray also that each of you has this same awareness of having been given a wondrous gift -- without the terror of possibly losing it.

The Cancer's GONE!!!

Ok, I said I was going to kick cancer's ass -- and I DID!! I got my midpoint PET scan results back yesterday, and they were clean. Here's a quote from the report:

"INDICATION: 40 year old female with history of Hodgkins lymphoma. Staging PET scan from 12/04 reported abnormal uptake in the nodes in bilateral neck, mediastinum, bilateral axillae, abdomen, pelvis and inguinal region as well as diffuse and focal splenic involvement.

FINDINGS: No metabolic abnormality in the neck, mediastinum, or axillae. No metabolic abnormality in the liver, spleen, or bilateral lung parenchyma. No metabolic activity within the soft tissues below the diaphragm, including inguinal regions. No metabolic abnormality within the bones.

Compared to prior PET scan from 12/04, previously seen abnormal uptake within the nodes both above and below the diaphragm including abnormal uptake in the spleen has completely resolved with no residual metabolic abnormality in these regions.

IMPRESSION: No metabolic abnormality to suggest residual active malignancy."

Pretty freaking amazing. I am so grateful, so incredibly grateful. I'd been praying about the results -- they were in on Monday, but the computers were down at the radiation center and so I couldn't get them. So the prayers continued, and this running cycle in my mind went around and around: "Please, please let me get a clean scan. But they're done -- it's too late." Then I would just imagine the results changing on the printed page, on the computer screen.... Then I'd go through it all again, like some sort of uncontrollable mental repeat cycle.

I cried when I read those results, and then again in rereading them. I am humbled by this gift. Getting a completely clean scan at the halfway point is considered to be a strong prognostic indicator, reflecting a decreased probability of subsequent relapse -- vs. a result of 75% reduction, for example. They're both great, but damn, I got the very best news I could.

So now I continue with six more treatments, with the first of those six occurring tomorrow morning. I met with my oncologist this morning, and she was ecstatic! She gave me a big hug (of course, she's very small, so her face just barely cleared my ample bosom!) and was just so encouraging. At the end of the six treatments, I will have NO RADIATION! I am just beside myself.

I want to thank you, my friends, for all the support you give me; I know with certainty that you've been key to my staying as positive as I have -- and that's some priceless medicine.

A malignant node must be 2 cm. or larger to light up on the PET, so it's possible that there are still some tiny evil nodes and/or evil cancerous cells. That's why it's necessary to continue with the second half of treatment. It's the final mop-up. I know that these next six will be hard, but the knowledge that I'm in the home stretch and that IT'S WORKING will get me through it. I'm just so, so happy and grateful.

And amazed. Life really is a kick in the pants, isn't it??