Monday, August 31, 2009


So the scan is complete and now we wait. 

Everything went relatively well today. My mother came with me because as she said: "She had nothing else to do." Right - who chooses to spend the morning sitting through someone's PET Scan process? A devoted mom does. It certainly helped to have her there as it is a long prep process. 

First I had to be injected with the dye that would illuminate my insides. They had to call in a nurse to access my port. I wasn't about to go through another IV, this is why I got the thing in the first place. Inside my chest is a "power port" meaning that it can even suck in the chemicals needed for PET Scan illumination and draw blood. The nurse wasn't exactly Ms. Friendly Face and not exactly adept at the insertion either. But she got through it and the dye was spewed. You'd think the removal of the port needle would be the easy part but that proved to be more difficult. She said nothing as I could feel her writhing and yanking on the hooked needle as it wavered around in my port. I just closed my eyes and breathed. 

They changed the needles recently, she explained: "They used to just pop right out. Now you've got to wriggle it back and forth and say a few 'Hail Marys.'" 

Well thank the sweet mother of Jesus, she finally got it out. 

"Ya, that didn't feel so good," I replied, so thankful for the skillful hands of my oncology nurses. 

Then I was given a good, heaping dose of Barium Sulfate the "pina colada" flavored milky cocktail I fondly remembered from my first PET Scan. I was given an hour to drink it and to allow all the chemical mess to traverse my insides and light up my body like a Christmas tree. This will let the docs easily see whether there is any evidence of cancer remaining in my blood and organs. 

While I sipped/choked down the mixture my mom and I played Gin Rummy and watched bad morning television. The time passed quickly and it helped to keep my mind off the importance of what was to come. 

The actual PET-CT Scan lasted 25 minutes. I laid in a narrow "cradle" with my arms over my head, my body strapped in and my ankles strapped together so that I wouldn't move. On the ceiling outside the machine is a tranquil scene of backlit clouds - the last bit of peace before entering the long, narrow tunnel. Lite 100.5 played in the background - a little James Taylor, a little Whitney Houston - enough to lull me and send me into a doze while the machine whirred. Then it was over. I switched out the scrubs-large-enough-for-a-400-pound man back for my 7 jeans, donned my lucky moccasins and headed out the door. 

I forgot to ask how long it will take to hear the results. Maybe I did that on purpose. I'll hear when I hear and that will be okay. Tonight I went to yoga which helped to further clear my mind about all of this, to push away the fear and know what whatever will be will be and that I can handle it. How could I not with the two loves of my life by my side always? So I'll keep going in and getting my Neupogen shots and Sammy, Craig, my huge support team, and I will wait for the call about results ... tick. tick. .... tick. 

Saturday, August 29, 2009

Chemo Day Eight

It's amazing how this roller coaster can change from climbs to dips to lightning speeds to terrifyingly slow crawls so quickly. Two weeks ago I said that I didn't mind going to my chemo infusions, that I actually looked forward to them because I knew it was one step closer to getting better. Well, that perspective completely changed with this eighth infusion - the completion of my fourth ABVD cycle - two more cycles (four more infusions to go). 

It took every ounce of mental strength I had to get to this infusion. Maybe it was because it was the first time I was driving myself there. Maybe it was because it was a Thursday and I knew the usual crew wouldn't be there to meet me. Maybe it was because I never quite bounced back this time around. Maybe it's because I'm just getting damn sick of feeling sick. The whole premise of chemo is so counterintuitive. The only way to ensure that you can beat cancer is to subject yourself to these drugs that make you feel awful. I've had much more debilitating side effects from the chemo than the cancer itself. At least that's what I feel like now. The cumulative effects of the chemo are really starting to kick in - it's not nearly as manageable as it was for me in the beginning, and I don't know how much more my body can hold up to. 

The morning went as normal. I packed my chemo bags - one with healthy snacks and lots to drink, the other with a sweatshirt, my laptop, book, magazines, thank you cards and other things to keep me busy. But when I got in my car to actually drive myself to the cancer center I lost it. 

The day was beautiful - crisp 70s, no humidity, the sun was shining and I was livid that I had to be stuck inside, hooked to an IV for five hours. I did everything I could to prolong actually getting there. Hmmm, I didn't have any fruit this morning. I should stop at Starbucks for a smoothie. I dillydallied there for as long as I could. When I walked in I felt like everyone was staring at me. Most of the time I don't even notice other people, but when I get into these super sensitive modes it's all I notice. I feel like people whisper, like they're looking me up and down trying to figure out what's wrong with me. Is she going through a sex change? Is there no hair under her hat? What is that thing sticking out of her chest? Does she has three nipples? Why is she wearing fuzzy slippers on a hot summer day? 

In retrospect, I'm sure no one was even looking twice but sometimes I feel like I have a neon sign flashing on my chest that reads: "Yes, I am young, but I have cancer. No, I didn't do anything wrong. I was healthy and now I am sick and am going through a lot of shit so what's your excuse?" Sometimes I hear people bitching and complaining and I just want to scream: "Do you know how good you have it?!" Of course, I don't know how good they have it. Everyone has their baggage, their bad days, their emotional days and I know I have no right to think that my situation is worse but sometimes these awful feelings of resentment take over that I just can't control. 

In Starbucks Bob Marley's "Every little thing is gonna be alright ..." was playing. Normally, this jam always gets me in a good mood. I listen to a lot of raggae lately, especially during chemo as I like the relaxing beats and it makes me think of the beach and sunsets and sand between my toes. But this day I wanted to rip the speakers out of the walls as the smoothie machine whirred with my banana and strawberry puree. "Don't you understand - everything is not going to be alright - not for a long, long time." 

I got back in my car and my eyes welled until I couldn't control it anymore. I just bawled and bawled, choking on my own tears and bawled even more when I would catch my pathetic face in the review mirror. Again, I have never been a crier and have always had complete control of my emotions. But now? There is no question who is boss. My appointment was at 10:15 a.m. It was 10:10 a.m. when I pulled up to the cancer center. I couldn't do it. I couldn't pull in the entrance.

I kept going a few parking lots down and pulled into an arts magnet school that I didn't know existed. I chose the furthest parking spot so that know one would see me, this heaving wreck in the driver's seat. I sat there and gave myself a pep talk to pull it together. I was literally talking out loud telling myself I could get through this. Telling myself that I didn't have a choice, that I needed this medicine or I could die. I truly could die and I needed to suck it up and get my sorry ass in there. I told myself: I've done this seven times before, seven times, and I survived all of those. Why would this be any different? 

I reached deep inside to a place that I've visited a lot through all of this and found the strength that I needed. All throughout this cancer battle the two words, I guess you could call them mantras, that have helped me are "strength" and "peace." "Strength" in the sense that I need to ensure that my body and mind are as strong as possible - that my inner strength and the strength of those around me will carry me through - it's all I have. "Peace" in the sense that this is my end goal. I want peace in my body, peace back in my life. I want the battle to be over, to be able to breathe and not have it hurt. To be able to wake up and jump out of bed ready for the day at peace with what I've gotten through and at peace with whatever challenges and rewards come next. 

With strength and visions of peace I wiped the mascara from under my eyes, tried to dull the redness, turned the engine, dropped in the clutch and creeped two driveways down to the cancer center to make it to my appointment just three minutes late. 

Though the lab tech taking my CBC was so sweet I could hardly muster a smile. I was afraid that if I spoke I would lose it again so I just sat there as she pricked my finger and squeezed my blood into a vile. I waited in silence as my blood levels were collaborated in the machine. When I got the copy of my printout I knew it wasn't good. 

I met with another doctor in the practice who looked up my history and noted that my white blood cells and granulocytes were at the lowest levels they've ever been. The printout had double stars and double "L"s for low - I've never seen this before. My WBCs were 2.4 K/uL (reference range is 4.1-10.9). My granulocytes were 0.3 (reference range is 2.0-7.8). He told me that he was very hesitant to treat me as that it would only make it harder to bounce back and I'd be even lower before my next treatment. He must have noticed that I was ready to scream, cry or faint. I dragged myself here. I was going to get treated. 

"But, I'll treat you. Only because you're wearing that shirt," he said. I was wearing the "Stupid Lymphoma" t-shirt I ordered from I'm Too Young for This courtesy of my Arts Council friends. These funny t-shirts have really gotten me through a lot. 

Thank God. But my treatment was on that condition that it would be followed up by a much more aggressive use of Neupogen the following week to boost my counts back up. So I'm going from my usual two doses to a shot in the arm every, single day next week. This means much more bone pain to look forward to as the Neupogen forces my bone marrow to work overtime. He also explained that he was hesitant to take me off schedule because I am on a curative regimen - to mess with the every two weeks schedule is to mess with my survival rates and no one wants to do that. 

I asked him if my low counts were why I had been feeling so fatigued and lethargic-much more than ever. He explained that I am at the roughest point of the Hodgkin's treatment. That now is the point when most patients really start to feel the cumulative effects of all the drugs. That my bone marrow is fatigued, which leads to my general fatigue - both physically and emotionally. 

"You have a lot behind you, but still a lot more to go," he said. "That really weighs on people." 

Hearing that made me feel normal again. It's not me. It's all part of the process - not that it makes that process any easier. I've discussed this phenomenon with other Hodgkin's patients. Yes, we've got the "good" cancer - it's curable, unlike so many other types of cancers. However, that doesn't change the shit we have to go through to get cured. It doesn't change the here and now. The emotional and physical tolls. The strained relationships. The self doubt. The questioning. The straddling of lives between who you used to be and who you are with cancer. Yes, the thought of knowing that this isn't a death sentence helps get you through the really tough times, but it doesn't make those times any less tough. 

So I picked up my bags and settled myself in a chemo recliner. My mother and grandmother showed up to keep me company and that helped distract me from my angry thoughts. Then five hours later the IV machine beeped that the final bag of meds was done. My port was unhooked and it was over. Another one down. Just like all of this, it's only temporary ... 

Now as can be expected I'm feeling pretty awful. There's so much that I want to do but my body is like dead weight - so tired - while my mind is going a mile a minute from the steroids and from my anxiety. Monday is a big day. I have my PET CT Scan. Dr. Dailey's hope (and all of ours of course) is that the results will come back cancer-free. This is why he wanted to wait until I had four full chemo cycles under my belt to ensure that it had time to do it's cancer killing. 

I've never been so scared about something in my entire life. More so than the first PET Scan. More so than my biopsy. Good or bad results they're going to change my life. Even if the cancer is gone I will complete the final four chemo infusions to make 12 for good measure. And if it is gone, now what? How long will it take to be healthy again? If the cancer's not gone then we look at other options ... options I can't even get my head to entertain right now. 

Wednesday, August 26, 2009

Back to Reality, Which Still Doesn't Seem Real

Like Backstreet, I'm back. We were on the Cape all of last week and had no internet access - which made the vacation that much more tranquil. Well, until day four when Craig and I couldn't stand it anymore and we drove around residential neighborhoods to find an unsecured wireless network we could tap into to catch up on e-mail and Facebook. But, no blogging. 

The week was just what the doctor ordered: lots of sun, sand, salt water and the calming motions of the sea. The sunsets we saw on the bay side were truly humbling and put the whole cancer saga into perspective. We did a lot of swimming, sun (well, more shade) bathing and fried 
seafood and ice cream eating. I read a book - a non-cancer related one - and remembered how much I miss this favorite hobby. We hit the Captain's Course at Pirate's Cove for mini golf, took in the Carnival parade in P-town - always a good time, and hit up the rail trail. I myself biked 10 miles - a few stops were thrown in along the way and I certainly wasn't at my normal clip but it felt good to work up a sweat. We kayaked through the salt marshes and walked as far as we could on the sand bars at low tide. We went on a highly successful whale watch seeing dozens of these giant, majestic creatures. Most importantly, we spent time with just each other, relaxing and taking a break from life. 

The Monday of vacation was tough ... the bone pain still highly prevalent but with each day things got easier until I was pretty much back to "normal." This week was back to reality. It's hard enough coming back from vacation to get back into the swing of work and life, but it was made even harder knowing I had to get back to my cancer realities with an impending chemo treatment this week. I went into the office Monday and Tuesday but ended up really exhausting myself. Each time through this cycle I get this false sense of strength and then realize quickly when my body has had enough. Yesterday I came home from work, crawled right into my bed and woke up at 7 p.m. only to head back to bed 2 hours later and sleep through the night with no problem. I'm certainly not back to myself yet. Regardless, tomorrow is chemo infusion number 8 and it's time to go through it all all over again. 

I'm getting my head and body in the right place to gear up again. Like some carb load before a race. I veggie load before my treatments. I saw a nutritionist a few weeks ago who said I'm doing everything right. That my BMI is perfect. That I'm drinking enough water. This is not what I wanted to hear. I wanted a magic bullet. I wanted her to say, "Oh, you need to be eating lima beans and pomegranate seeds three times a week and that will cure your cancer in no time." No such luck. She did however manage to scare me about my food safety habits - who knew you were supposed to wash the tops of cans before you open them or put sponges in the dishwasher? Yikes. I also learned that I am supposed to stay away from raw fish - i.e. no sushi (oops), soft cheeses, and any foods that look even remotely close to spoiling. It all comes back to my weak immune system. To add insult to injury, we've met with a pantry moth infestation so now I'm wary of everything I eat. She was however concerned about my protein intake so I'm eating even more leafy greens, beans, nuts and lean meats. This should give me the strength that I need.  Unfortunately it doesn't help the problem with my "bottom" which has yet to heal - I'm still just grinning and bearing it. 

This is the second time I'm going in on a Thursday. The Cancer Center has a whole different staff so the experience is a whole different game. I'll be seeing a different oncologist, will have a different lab tech, different nurse. They're all equally nice, but we just don't have that bond that I do with the Wednesday crew. I'm also scheduled to get a Reiki session while I'm getting my treatment. I'll just wheel myself and my IV pole to the massage table with the goal that the Reiki will curb some of the late chemo effects ... here's hoping. 

Sunday, August 16, 2009

Chemo Day Seven

When I wake up in the morning my body sounds like a freshly poured bowl of Rice Krispies cereal – lots of "snap," "crackle," and "pop." This has been the case since my latest chemo infusion Wednesday. It feels as if my muscles are stretched to their outermost limits to wrap themselves around my achey bones and angry blood. It's almost as if my muscles are trying to protect them from the cellular battle they have going on inside themselves.  It takes me a good 15 minutes to come to terms with my body, to stretch it out as best I can. Pop one hip out after the other. Violently crack my ankles. Do a little cat and cow lower back yoga stretch. The elongating sensations last only a short while until again, like shrink wrap, my muscles are tightened to a taunt fit. So goes my days. 

I tried a Reiki session the day after my treatment hoping for some positive energy against the aches and pains that I knew would be coming. The treatment was extremely relaxing. The sessions are conducted by volunteers right in the cancer center. Medatative music was played by the little massage table and all I had to do was lay there, be conscious of my breathing and imagine myself in a calm place. The Reiki practitioner targeted different areas of my body with a very light touch as she breathed deeply and transferred our energies between us. I can't say that it eliminated my aches, but I'm told that the effects are cumulative. I plan to take more advantage of these sessions: good energy in, bad energy out, relaxation. It all adds up. 

For now I just get used to living with the pain. And today, it's been horrendous, beyond the realm of the extra strength Tylenol that usually does the trick. Again, the flogging feelings are back - today it feels more like getting walloped in the back with a titanium baseball bat over and over.  For some reason I picture a very mean, dirty, freckled faced, red-haired kid doing this to me – laughing sadistically all the while. Underneath the beatings is the bone pain, the deep, deep bone pain. Unfortunately, this piece seems to have gotten harsher with every treatment, maybe because it's getting harder for my body to stand up to more and more rounds. It's not just the big bones that ache. It's the little ones, and these hurt even more. My cheekbones, my eyebrow bones, my teeth and most prominent lately, the right side of my jaw which I haven't been able to open fully in two weeks without a lot of pain. I'm told it's all a result of the chemo drugs. Even so, for this pain I imagine that my body is filled with an army of those little worker men from Fraggle Rock and they're all chipping away at my bones with their piercing little pick axes – these guys sadistically smiling and singing. 

Another special treat that's become more prominent is odd skin discolorations. These are also a result of the super evil Bleomycin (the same drug capable of collapsing lungs). They show up in deep purple shades, almost like a birth mark or bruise in very random places. I now have one on my stomach – just in time for bikini weather – and there are odd slashes of coloring on my thighs. It almost looks as if someone singed my skin. So far my face has stayed free and clear and let's hope it stays that way. 

How did I get here? Wednesday's chemo infusion was normal enough. Craig was my escort this time so he got to get in on the action. It is actually really enjoyable going into the chemo treatments. I truly look forward to seeing everyone at the center. I've become very close with the nurses and lab techs as I see them more than I see most anyone else these days. And when I go in for my treatments, each time I know it's a step closer to being done with this. 

The nurse used my port for the second time, but this was the first time that it was not already engaged (last time I came right from the port insertion surgery). I wore my "go ahead, poke my port" tank top and everybody got a kick out of that, nothing like a little insider cancer humor. There is a little needle prick involved but it was nothing compared to an IV insertion in my arm. The needle is actually shaped almost like a hook so she sticks it through my skin and the needle bends right into my 
port and the hole that leads to my blood stream. Yes, very creepy. However, what I enjoy about it is that I can't see it - well, until I saw this picture that Craig took. I think that watching the drugs enter my veins through that arm IV was really starting to get to me. With the port I can almost "forget" that my veins are sucking in their cocktail. Both of my hands are free to read or eat or manhandle my ice chips. 

Craig was actually disappointed that it didn't take longer than it did. The port shaves about 90 minutes off of my chemo time so I was only there for about four hours as opposed to five-and-a-half. He had lots more games he had brought to play with me and more entertaining to do. I even ended up falling asleep for the last 45 minutes - what a lame chemo date I am. The Decarbozine is the last drug that I receive and I never would have been able to fall asleep when I got it as an IV as the burning was so horrendous. The fact that I didn't even feel it made me smile. 

Another thing that make me smile is that I seem to have kicked this upper respiratory infection. The cough medicine and z-pack antibiotics did me good. We'll keep monitoring it but this seems to mean that I'm in the clear of any negative Bleomycin lung activity. 

Despite how shitty I feel today I am very, very much looking forward to tomorrow and know that it will be better. Craig and I will be on the road for six days on Cape Cod – a very welcome and much needed respite. I've been working every day (except chemo days) since I've been diagnosed and look forward to taking some time to myself to do some thinking, some reading, some painting, some swimming and bonding with my husband. We've both been through quite a tough ringer and are looking forward to hanging out to dry for a little while. 

Tuesday, August 11, 2009

Take the Good with the Bad

Lots of good things have been happening lately, including new babies and big birthdays. Amid them comes the bad - hacking coughs, chest x-rays and nausea. So it's been about finding a balance and I'm so glad that I have something to balance the badness against. The good things always outweigh. 

On Friday, Craig and I drove up to Mass. to meet our 5-day-old nephew, Jake Reid Diamond. He is nothing less than amazing. We're very close with Craig's only sibling, Eric, and his wife, Rachel and could not be happier for them. He is so adorable and such a good baby. We got to cuddle with him and watch his hilarious facial expressions. He has more hair than I do and the tiniest little fingers and toes. 
There's nothing like the delicate preciousness of a newborn to put your own life in perspective. I can't wait for many, many more visits with the little man. 

Then it was onto a day of birthdays Saturday. My little brother turned 20. This is insane to me as he'll forever be burned into my brain as an eight-year-old blondie with a bowl haircut ramming his Tonka trucks into the back of my ankle. It doesn't matter that he towers over me, I still can't wrap my brain around the fact that he's now a twentysomething. It was great to see my whole family. We played illegal jarts in the backyard and Sammy even came along to wish a Happy B-Day. She only once, maybe twice, came close to knocking over the picnic table with her long lead. Marley disasters averted. 

Saturday night it was onto our friend Jason's 30th birthday party at Cugino's. All of our longtime friends from Harwinton were there traveling in from California, Mass, Vermont and all over CT. We shared lots of laughs and wine over an authentic and delicious Italian feast of fried calamari, stuffed peppers, salad, pasta and chicken parm. I made it until midnight then it was pumpkin time. I dragged Craig home and slept, hard. 

It was up early on Sunday to drive back up to Mass. This time for my dear friend Liz's baby shower. With some much needed coffee and the windows down the entire ride I headed up the Mass Pike to Worcester reminiscing about the hundreds of times I would make the trek from UNH down I-495 to I-290 through Worcester to visit Craig at UConn. The ride was nostalgic. I like driving by myself. I like the peacefulness of the car. I like that I can blast my music and sing to my heart's content with no one there to have to suffer the consequences. I then hitched up with four of my close girlfriends in Worcester to carpool the rest of the way to North Andover.  So together, two lawyers, an engineer, a medical student, and I were on our way. 

At the baby shower we met the rest of group and the nine of us reunited. We've called ourselves the "girlz" with a "z" since high school. It's stuck and so have we. I love being with these women. Everyone is fun, intelligent, successful, hilarious and huge hearted. It's rare that all nine of us can make an event - we're in many different states now: CT, NY, NJ, MA - so I was not about to miss one of the girlz big days, no matter how tired I may have been. Liz looks fantastic and the teeny baby boy clothes were painfully adorable. 

Not only were my girlz there, but there was also a table full of teachers from my elementary school - Liz's mother among them. Having gone to a very small elementary school- Southwest School in Torrington, I was very close with the teachers and the Southwest community certainly keeps you in the family. There has been an outpouring of support from them since I was diagnosed and it was so nice to see them to be able to thank them in person. One in particular is a hero of mine: Suzy Kline. She was my second grade teacher and my inspiration to pursue a career in writing. She is a very successful children's book author - the woman behind Horrible Harry, Herbie Jones and other series. In class we used to get to go over her books with her as she drafted them and see the red edits and suggestions that her editor would make. She'd look to our class for feedback and draw her story ideas from her students. I thought, and still think, that she is amazing. If you check the dedication page in Horrible Harry's Secret you'll see my (maiden) name along with the rest of my fellow second graders. A small claim to fame. 

We took a quick trip to Liz and Tom's home in Bedford to see the beautiful blue and chocolate brown nursery they've got ready for baby TJ. Then with a couple fruit punch Capri Suns for the road I headed back home. Our couch felt glorious to fall into. 

Amid this jam-packed weekend I started developing a nasty, deep chest cough. I first noticed it on Saturday morning when I woke up shaking coughing like I was going to puke up my lung. I went to yoga and couldn't take a deep breath without progressing into a coughing spasm - quite embarrassing in a room full of calm. So I managed to train myself to take shallow breaths and got through the rest of the weekend's festivities with minimal coughing spasms. But by Sunday night when I got home after pushing myself probably more than I should have between work and play last week, I knew something wasn't right. 

Monday was spent at the cancer center where I got tests of my oxygen levels and heart rate, blood work and evaluations by both Dr. Dailey and his fellow. The "hope" is that I picked up some kind of bug that has given me an upper respiratory infection or virus - easy to do as my immune system is so compromised. Dr. Dailey says that there has been a high concentration of respiratory infections like bronchitis floating around so I could have picked it up anywhere. I say that this is the "hope" because the alternative is that I have developed Bleomycin-induced pulmonary toxicity. This is a damaging of the lungs caused by Bleomycin (the "B" in my "ABVD" in about 10% of patients). I was sent in for a chest x-ray to see if there were any obvious signs of infiltrating lung disease. Turned out my x-ray was normal. This is good. So now I am on antibiotic to kill and cough medicine to suppress this bug. They cause a lot of nausea, but again, I take the good with the bad. Now we have our fingers crossed that everything continues to get better and it's not an early sign of this Bleomycin reaction. If it is, the drug would need to be pulled from my regimen to avoid what could be dangerous damage. 

"I think you're going to be okay. Can I say that?" said Dr. Dailey when he called to go over the chest x-ray results. 

"Yes, you can say that." I replied, smiling through the phone. 

With that news it was out to celebrate our 2-year wedding anniversary. We enjoyed a fantastic dinner at Metro Bis in Simsbury, a restaurant we tried for the first time. Fantastic calamari, pita and hummus, farm fresh salads, flank steak for Craig and a South American catfish for me. Lots of protein, iron and Omega 3s. My nutritionist would be proud. Then we got home and settled in to watch our wedding video. Mind you, this is not a professional video. Craig's uncle took it upon himself to film every moment of our wedding ceremony and reception with his hand-held camcorder on the sly. The moments he captured are completely unscripted and raw. It makes it that much better. I don't know what's more entertaining - watching us share our vows or watching everyone's slick moves on the dance floor when they think no one is watching. Either way, it was great to reminisce. Priceless. 

Today it was decided that despite this infection that I'm combating, I am strong enough to go through chemo after three days of antibiotics in my system. Dr. Dailey didn't feel comfortable pushing the chemo too much off schedule as we plan to be at Cape Cod next week. He doesn't want to be too "casual" about it. I agree. So here I am, ready for infusion number 7. 

Friday, August 7, 2009

Safety Net

I saw Funny People with my sister this week and it got me thinking about the "cancer support network" that everyone talks about when you're first diagnosed. About how important it is to have people that you can count on to make you laugh, help you cry, look at things with a new perspective, give you strength and encouragement and make you realize how important you are to other people's lives - that you're not just fighting for your own life, you're fighting to stay around for everyone who needs you as well - and that's a really good feeling. 

In Funny People, Adam Sandler plays a big celeb but one that is also a loner with no true, deep connections with people --- until he meets Seth Rogan or "Shmira" and the story progresses ... .  It got me thinking how incredibly lucky I am and how I would not be able to bounce back from the negative thoughts and the pain without the help of my taunt safety net. The net is grander than I ever could have fathomed. 

During this experience I have reconnected with people I haven't talked to since middle school, heard from teachers that had me in kindergarten, formed closer bonds with friends, with their families and with my own family. Like I said in one of my first blog posts, it's like being there to watch your own funeral. It's truly a gift to be able to see the lives that I've touched along the way and how many relationships that I've made in my 27 years. It's deeply humbling, incredibly moving and has been vital to this whole healing process. It's difficult to know the effect you can have on someone's life until you're thrown into a situation like this. At the same time you learn what a profound effect people's simple words and actions can have on your own life. 

In the three months that I have been diagnosed, there has literally not been one day that a card hasn't arrived in the mail with some words of encouragement or a crazy memory to share. That's not to mention the thousands of e-mails, Facebook messages and wall posts and blog comments that have touched me in so many ways. Keeping up with all the correspondence is a big job --- a job I wouldn't trade in for a second. And the visits! We are so lucky to have such an amazing set of friends from all walks of life and they all provide a much needed escape from the day-to-day doldrums of cancer crapness. And the strangers that I've met on cancer websites or through their own blogs who have now become close allies in this fight - people I can learn from, swap tips with or just bitch with without fear of making them feel uncomfortable because they're reeling from this too. 

I've been going back to the office more on my off-week now that I've been feeling stronger. Being around co-workers, easing back into a more regular work schedule has been fantastic on my nerves and on my confidence. When I'm interviewing someone for a story or designing a web page I'm not thinking about the multiplying cancer cells or the port pain. I'm so thankful that I have the opportunity to keep on working and contributing to the greater society beyond my little cancer ridden world. 

When I was having a particularly hard time after last week's treatment and port insertion I sat down and flipped through all the cards I've received since my diagnosis. I've saved every one and have been collecting them in a basket in the kitchen --- a basket which I've had to upgrade in size twice. Then I dumped them out and just had to take a picture not being able to comprehend how amazingly thoughtful people are. 

Things that I would never even think of have shown up at my door to cheer me up: subscriptions to magazines like Natural Healing and People, Netflix subscriptions, yoga class and Amazon gift certificates, funny books, informative books, beauty products, relaxing candles, CDs, peanut M&Ms and healing crystals, restaurant gift certificates, house cleaning services, offers for Reiki and reflexology sessions, lots of movies, tomato, parsley and basil plants, hanging baskets, food, food, food and treats. 

All I can say is that I cannot wait to pay this forward for the rest of my life. My safety net is strong. I know no matter how hard I may fall at times, you'll all always be there to catch me. It's because of you that I can get past the fear and leap from peak to peak over the deep valleys of this journey with courage and determination. 

Monday, August 3, 2009

Body Backlash

It's been a rough few days on my bod. The port has been much sorer than I expected it to be and I've been popping Ibuprofen like candy. It's very tender and the skin is very stretched, especially at night when I'm not conscious of my body movements and writhe the wrong way in my sleep. Let's just say I've been waking myself up a lot, frantic that I yanked the sucker right out of my skin in an unconscious stupor. I know this is an unrealistic thought. The doctor told me that unless I am pitching fast balls for the major leagues there is no way that thing is coming out. But the doctor doesn't know how vivid my imagination is ... . As a result of not really sleeping through the night I've been extra tired since last Wednesday's chemo treatment. It's hard to know what's a result of my body recovering from the port insertion and what's a result of the chemo slam in general. 

I slept, a lot, this weekend and couldn't quite shake the fatigue. We got out Saturday night and ran lots of errands Sunday, which was good, but each time we got home I was rocked -- to the couch, to the bed, to the couch was how I rolled. Today is much improved on the fatigue front, but the body aches are back in full swing. It feels like that familiar flogging of my first chemo experience. All of my joints are incredibly swollen and stiff and my muscles are knotted into pretzels. I feel like the Tin Man when they found him rusted in a metal heap on the side of the Yellow Brick Road. So what's a girl to do but find an oil can?

For me, the rejuvenating oil is lots of water, lots of good food and moving as much as possible. In between work projects I am sure to get up and stretch. I graze on something nutritious every couple of hours. I'm truly surprised that I do not way 500 pounds because I literally eat all the time. I'm always so hungry and so drained that the food fuel is the only thing that helps. Luckily, I just keep burning it off in the death match that is my cancer fight. 

Tonight Craig and I took Sammy for a long walk to the Farmington River so she could go for a swim. We covered almost two miles and besides the infestation of swarming mosquitos it felt great. Now I know I'm starting to climb back out of the chemo trenches. I'm starting to get used to my new lady lump. I don't shudder when I look in the mirror at my bulging bionic chest anymore. I don't know that I'll ever get used to it--in fact, I don't want to. This is only temporary, as is all of this. The superglue that's holding the incision together will be there for another two weeks so it will be a while before it's the "thin white line" that the scars will supposedly be. I have started having some fun with it though. When I wanted out of Lowe's and the uncomfortable situation we were stuck in with a hopeless retail clerk who had no idea what she was talking about I whispered to Craig: "Abort. Abort" as I tapped my lump and whispered into its "speaker" like a secret agent. I also ordered a tank top online that says: "Go ahead, poke my port." This makes me laugh very hard and I cannot wait for it to arrive. 

As far as my emotional side goes, it's just as weak as the physical side. I'm trying my very, very hardest to be positive, but sometimes I just can't fight the bitterness and anger that boils within me and I don't like those feelings - they are very foreign to me. Others have told me that this can be the most difficult point. There's so much behind me yet so much more still to go. I do get very tired of it all. Tired of living with cancer's ramifications. Tired of talking about cancer. Tired of people's sympathetic looks or watching them struggle for the "right" words to say. Tired of reaching my limitations much sooner than I would want to. I'm tired of being bald. I'm tired of my anal fissures. I'm tired of my achey hips. I'm tired of worrying about dying. I'm tired of seeing healthy people and getting angry at them. I'm tired of crying for no reason. I'm tired of feeling sorry for myself. Sometimes I'm just plain tired of being strong. Over the first three months Hodgkin's was almost a novelty of sorts. It was: okay, I can do this. I will beat this. Bring it on. Hear me roar. Now it's been brought on and on again and on again and on again ... . The novelty has worn off. 

Don't get me wrong - I still know I will beat this. I've still got a fire under my ass to fight it, it's just that I'm ready for it to be over. How many times can I get knocked down and keep getting back up? I try not to consider the answer.