Thursday, July 30, 2009

Half-Way Hump and My New Lady Lump

I got through number 6. That means I am half-way through my scheduled chemo regimen. I've been through a lot and it's quite rewarding to look back at how far I've come. However, the taste in my mouth is bittersweet right now. I know I'm over the hump which is hugely exciting, but I also know that I have a whole new set of what I've already went through that lies ahead. What I can only hope is that it will be easier, more predictable and that I will continue to grow stronger and stronger as the cancer fades away. I know this will be the case. 

The good news is that I made it through my port-a-cath insertion on Wednesday, just hours before my sixth chemo infusion. Right now my chest and neck are extremely sore from the procedure but once that fades I know I'll be forever grateful for this handy-dandy vein access. It hurts to lift or pull anything with my right arm and it's very hard to sleep on it though I've been very tired since Wednesday. My skin feels painfully stretched over this new lump in my chest where the port now sticks out. The muscles around the veins ache where the port line was jammed through. The nurse told me that because I am very thin in my chest area and am also athletic and therefore have strong neck muscles, I'll be much sorer than a little old lady with a lot more flesh and no muscle. My head was turned to the left during the entire procedure and continually forced as they shimmied the plastic little sucker down my major vein - hence the stiff neck. 

The procedure went smoothly starting bright and early Wednesday morning at 7:15 a.m. My nurse was fantastic, so reassuring and understanding. I admit, I was pretty nervous about the whole thing for some reason but she and Craig kept me laughing during all the surgery prep and helped me feel much more at ease -- the Adavan she gave me when she saw that my leg wouldn't stop bopping up and down with anxiety didn't hurt either. It took her a long time to find a viable vein to send my IV into for the anesthesia to enter through. She ended up in my hand, remarking that she wouldn't touch my ruined arm veins "for all the tea in China." This helped to reaffirm my decision to opt for the port. She used a pediatric needle and told me to breath through it. I told her how I never used to be bothered by needles but that now it makes me woozy. She explained that after getting stuck as many times as I have no one can get used to it. It's one thing to get blood drawn once a year, another to get stuck every week. That made me feel better. 

After the port surgery Craig passed the "taking care of Karin baton" to my mom who arrived with some food and to take me to my chemo session. I arrived pretty woozy and tired coming down from my "twilight" state. They gave me a super comfy fleece blanket and I reclined deeply into the chemo throne. It was fantastic having the chemo drugs enter through my port. I felt nothing. No pain from the little needle prick. No burning as the drugs went through. No hot and cold sensations. No arm soreness. I think I can get used to this.

What I don't know that I'll ever get used to is the huge bump that now sticks out of my chest. It looks like a big button that if pressed will do something super cool like release a parachute or shoot out lasers, but unfortunately it does none of that. It just sits there creepily. You can even see the tube of the port-a-cath that now lives within my vein. But this is just par for the course. I've learned to take the bad with the good. It's only temporary and the day this is removed will be a strong symbol representing the end of this battle.  

Monday, July 27, 2009

Beach Therapy

I am feeling about 95%. Feeling very strong, very normal, very me. With each recent treatment it seems I'm recovering further, getting much closer to my normal self before the next treatment. Much improved over the first few treatments. Let's hope this trend continues. I know I had several days of fatigue and acheyness, but it seems like forever ago. 

This weekend my parents "kidnapped" Craig and me for a day away in Rhode Island. My little brother (who despite being seven years younger than me, towers nearly a foot over me) joined in on the road trip too. So it was me, Mike and Craig getting nice and cozy across the back seat of my parents car, Dad behind the wheel, mom manning the music and AC/open window swapping. 

Like three five-year-olds we entertained ourselves in the back seat by pinching a clothespin onto odd places like my mom's ear or the back of each other's arms. Though I was squished between two grown men, I couldn't pick two that I'd rather be rubbing sweaty shoulders with for two hours. 

We stopped to stuff our faces with fried goodness at a forever family favorite: Cap'n Jacks for fish and chips, fried whole-belly clams, scallops and greasy French fries. It certainly hit the spot - the perfect antithesis to my collard greens and rice cakes diet of late. 

Then it was to da beach. The weather was perfect - 80s, but a nice breeze so you didn't feel like a sweaty mess. Narragansett Beach was packed, beach chairs and blankets with scantily clad bodies packed in tight like sardines, but we found a spot and settled in. 

Michael and I headed for the waves, despite the bone-chilling temp of the water. I came to the beach to swim and having grown up on many years of cold Cape Cod waters each summer, I know the trick of a quick dive under the water to shock the body into adjusting to Atlantic Ocean temps. I LOVE body surfing. Anticipating the right wave and timing it perfectly so that you ride the crest all the way in, then getting your body wrecked as the wave crashes and forces you into the sand is one of my favorite activities. 

I had my white bandana tied tight on my head to block the rays and not freak people out. I don't know what made me think that would stay on. It's been raining like crazy for weeks so the ocean was particularly tumultous. After the first wave took me under that sucker was long gone. Suprise everyone! Bald girl riding the waves. 

"I'd rather you lose your bandana than your top," says my brother after I muscle my way back out to him at the wave break line. True that, I thought. 

After a walk with Craig to the breaker it was max and relax time. Surrounded by my favorite people in the world I spread out on the Mexican blanket and fell asleep to the sounds of my mom and dad talking and Craig and Michael tossing the aerobie. So content. 

Then we mozied back to reality stopping for ice cream and iced coffees then take-home pizza along the way. 

My belly was full. My heart was happy. My skin tight from the salt and sun. My bathing suit and bottom full of itchy sand. A perfect summer day. 

Unfortunately, I know these feelings won't last. After Wednesday it'll be several more days before I can think about body surfing again. Wednesday is going to be a very big day. At 7:15 a.m. my mom and I will be at Jefferson Radiology to have my port-a-cath surgically placed in my chest. I had a consultation today which helped calm my nerves some and helped me to better understand the great advantages of this creepy little device. From the "twilight" state I'll be in after the port insertion, it'll be a drive over to the cancer center where I'll jump right into my sixth chemo session ... this time through my newly minted port. If all goes well, the whole process will be faster and there'll be no pain from needles or the drugs themselves. Thank God I have my mom to make sure I make it to where I need to be and get through the day in one piece. It's sure to be a woozy whirlwind. 

Thursday, July 23, 2009





1.of or pertaining to the school of philosophy founded by Zeno, who taught that people should be free from passion, unmoved by joy or grief, and submit without complaint to unavoidable necessity.

I'm currently reading Dr. Bernie Siegel's Love, Medicine & Miracles: Lessons Learned About Self-Healing from a Surgeon's Experience with Exceptional Patients lent to me by a wise woman. It's fascinating and I think everyone should read it whether or not they're battling an illness. His holistic approach to healing makes so much sense.  

In it he talks about predispositions to cancer. Two being stress and suppressed emotions. I never considered myself a stressed-out person. In fact, many people, including my former boss, were always commenting how markedly calm I am under pressure. I work best under pressure and thrive in a fast-paced, deadline-driven environment (I believe that may be a line on my resume ...). 

Maybe responding well to all that pressure isn't always a good thing. Turns out unexpressed emotion can actually suppress the immune system and can manifest itself in disease. I very, very rarely cry. I don't get worked up or easily overwhelmed. I don't think I've ever had a fight with anyone in my life, well besides fights over Ken dolls and crab rangoon with my siblings. I don't yell. I don't get angry. I see lemons as lemonade. I'm even keeled, generally content and happy with whatever I'm confronted with. I've always been able to step back from a situation, formulate a plan and get 'er done. 

Dr. Dailey got it right in one of our first meetings together when I found out I had stage 4b cancer. I asked how that was possible when I wasn't feeling that awful. "Well, you were probably being very stoic about it." Ding! Well look where being stoic got me. 

Since my May 8 diagnosis all has changed. I liken my emotions to Mr. Toad's Wild Ride at Disney. Yesterday, I started crying while listening to a Bach concerto because the notes were just so beautiful. A couple weeks ago someone referred to me as "very ill" in a note and I screamed at the top of my lungs for a good five minutes. Today I was so overwhelmed with love for Sammy that I hugged her and laughed at her tail wagging furiously for about 10 minutes. I'm constantly doting over Craig now and feel like I keep falling in love with him all over again --- I think it creeps him out a bit. I must say, all extremes feel very healing, though it may make me seem a bit crazy.  

One of the questions Dr. Siegel asks his patients is: "What happened to you in the year or two before your illness?" Come to think of it, the past two years were quite eventful. 

In August of 2007 alone, I:  
-finished planning a wedding
-got married
-bought our first home
-delved into our first mortgage 
-moved out of our apartment
-survived a hurricane on our honeymoon
-had a run away car crash into the neighbor's garage on day 2 in the neighborhood

In the past year, I: 
-lost my grandfather
-lost Craig's grandfather 
-lost Craig's uncle very suddenly (in fact, this is the first time I learned of Dr. Bernie Siegel as he actually spoke at Kevin's funeral)
-lost Craig's aunt to brain cancer 
-got a new job 
-made the tough decision to leave an old job 
-got a dog 

If stress and cancer are interrelated, then I guess I can see how it could have developed. 

Siegel then asks his patients: "Did he or she openly grieve, rejoice, and face the challenge, or try to be calm and stoical?" Damn, that stoicism again. At the time, I never felt stressed during any of it, but now I see that maybe I didn't let myself accept that I was. I was always worried about how everyone else felt and trying to be strong for them. Craig is just the same as I am. Together we rolled with the punches, made each other laugh and smile and didn't let the little stresses that got others down get to us. Together we're one positive, smiley, stoic team. Maybe that's not always a good thing. Some of the things we've gone through were very, very difficult, especially losing his father to a long-fought battle with brain cancer just a few years ago. But we came out okay and stronger for it, because we always do. 

The loss of my Peppe two bitter cold Januaries ago hit me particularly hard. We were very close and I credit so much of who I am to him. He, too, loved writing and this blog is dedicated to him. I felt a very deep grief for a long time, still do. It was the first close family member I've ever lost and being a very small family - no aunts, no cousins, just the now 9 of us, it was a big hit. It took every ounce of strength I had to write and read his eulogy, but it was something I needed to do. Of course, I smiled through it, laughed and shared stories and didn't shed a tear in front of anyone at the service. When I was alone, and only when alone, that was another story. 

The last in a series of four questions Dr. Siegel asks his patients is "Why did you need this illness?" This is what I'm exploring now.

Says Siegel: "Sickness gives people 'permission' to do things they would otherwise be inhibited from doing. It can make it easier to say no to unwelcome burdens, duties, jobs or the demands of other people. It can serve as permission to do what one has always wanted but has always been 'too busy' to start. It can allow a person to take time off to reflect, meditate and chart a new course. It can serve as an excuse for failure. It can make it easier to request and accept love, speak your feelings, or otherwise be more honest. Even a cold has a meaning. Often its message is 'You've been working too hard. Go home and nurture yourself.'" 

I by no means blame myself or how I've lived my life thus far for getting me to this place. But I do see the fact that cancer chose me as an opportunity, not a punishment. 

Craig's mom always talks about listening to the little messages. Sometimes you get a tap on your shoulder and just ignore it. Then, another tap. If you keep ignoring it, you may end up with a piano falling on your head. I think this is my piano. I just haven't figured out exactly what that something is that I'm supposed to learn or do yet, but I'll get there. 

Until then, watch out. My emotions are running wild and free into the wilderness that is self-discovery. There's got to be a reason why this is happening to me and I will find it. 

Wednesday, July 22, 2009

Will Enough Ever Be Enough?

There may be fleeting moments when I don't think about it, but my cancer is a constant presence in my mind and in my body. I think about it in everything that I do --- not in the sense that it controls everything I do, but in the sense that I think of how everything that I do will affect the cancer. Maybe others going through this can remove themselves from it, but my mind has always been a little overactive. Like a complicated orchestral score I have several tracts running at once, always one step ahead of the next. Now one of those tracts is a steady beat of cancer, cancer, cancer. 

More than ever in my life I view my body as a temple: I want the good things in and the bad things out --- now. I'm trying so hard to do all the right things for my body, but I worry that enough will never be enough or that what I'm doing is not the right thing. I want to beat this so badly that the ache for health actually hurts. The yearning to live a life even better, stronger, more aware than I had before cancer is ever-present within me, a constant echo in my head. I've always loved life and my presence in it, and I think that's what makes this that much harder. I wasn't looking for a way out. I wasn't looking for a change. I was perfectly happy and felt so lucky every day. Now every day I worry that it's all going to be taken away, like the beautiful life I had was so beautiful that it wasn't meant to last. 

Like the end credits of a movie, there is a continuous scroll of things I must do to beat this: eat, breathe deeply, exercise, stretch, meditate, love, live, learn, educate, listen, let out your emotions, control your emotions, disinfect, drink water, push yourself, don't be too hard on  yourself, don't ask why, find out why, remember to breathe ... over and over it echoes. 

When I shop for food I refuse to put anything in the cart that has an ingredient that I can't pronounce. All of the fat-free peanut "spread" or butter substitutes that I used to eat sicken me now when I read all the chemicals listed in the ingredients. Give me raw, real vitamins and sustenance. My diet has become like a second job. I snack throughout the day on raw peanut butter, steamed kale, raw almonds, Greek yogurt, blueberries, bananas, strawberries, soy milk, crisp bread, lots of cereal and granola, whole grain anything, spoonfuls of flax seed. I've started cooking more meals. For me, a kitchen illiterate, this is a big deal. Recipes from Real Simple magazine are my new favorite experiments. I've taught myself how to grill salmon (big Omega-3 booster), craft many salad varieties and work fresh veggies and herbs into most of our meals.

I've become probably over-paranoid about contracting some kind of germ. More than the fear of the lymphoma spreading is the fear of contracting something that my body cannot fight as my white blood cells are few and far between and the ones there are occupied with the cancer battle. Craig is building me a fantastic walk-in closet as a birthday present. Last night he was sanding down the joint compound on the sheet rock without a mask on and when I walked into the room the air was filled with white dust. I freaked and pulled off all the sheets and covers to throw them in the wash and completely lost my cool yelling that I can't be inhaling these chemical toxins and that I'm fighting so hard to beat this and something stupid like this could kill me --- or worse, get him sick. Afterward I felt awful. This morning he wore a mask and I slept downstairs. I was never a germaphobe. I was a firm believer in the "five-second rule" and I confess that a quick sweep under running water was enough to wash my hands, soap was a bonus when I had time. Now, I sing the entire tune of "Happy Birthday" in my head to know that I've scrubbed and lathered enough every time I wash my hands ... which is hundreds of times a day. 

Yoga class has become a sanctuary. It has done wonders for my strength and flexibility. After each chemo treatment my muscles knot like nothing I've ever felt and the achyness doesn't subside until a few days before the next treatment. Yoga has taught me how to breathe so that my body is filled with the oxygen that it needs to push out the toxins it is holding onto. It has allowed me to elongate my sore body and become conscious of my tender and my stronger areas. The meditation and relaxation aspect had also been extremely beneficial. Every time I'm getting closer to clearing my mind, pushing out that cancer, cancer, cancer drum beat. It'll take much more practice but I truly believe in the link of mind and body in overcoming this. I like that in class I don't have to talk anyone but you can feel everyone's positive energy and peaceful auras. The silence of only the gentle music and common breaths feels unworldly. I can go at my own pace and I never feel judged if I have to revert to extended child pose or don't have the perfect posture. However, I've found that my balance and core strength has remained and I've been proud of the poses I can master. 

My walking/jogging/hobbling continues. I try to get out every day. This weekend I want to try breaking out the bike and see how that goes when I hit the trail. When I feel my blood pumping I try to imagine it pumping out the cancer cells. The more oxygen I get in there the freer it flows. Every day in the shower I scrub with a detox mineral scrub to give those bad toxins a better chance of escaping. I then slough with a natural bristle body brush removing dead skin cells that might block the way for what I imagine is the constant escape of badness for my epidermis. 

Today I go check in with Dr. Dailey and I have a slew of questions for him and hope to come back with some new plans of attack ... and maybe an appointment for a port insertion ... as my phlebitis is flaring up again. Looking forward to my mid-way PET Scan where I hope to see some assurance that all of this effort and writhing chemo side effects are worth ever bit of the pain and more. 

Saturday, July 18, 2009

Chemo Day Five

Another one down. And as always, another surprise occurrence, but I survived. However, everything was just a little bit off for this treatment. 

On the way there, my mom and I saw a woman bending in the middle of busy Route 10 to peel a hot, fly-covered dead opossum off the double yellow line of the street. Gloved hand alone, no mask or bucket, she picked the thing up by its rubbery tale and carried it to her truck. An unmarked truck, mind you. We weren't sure if she was planning on cooking it up in a stew or adding it to her taxidermy collection. Whatever she was doing, all I could think was: "and I thought I was having a bad day ... ." At least I wasn't scraping road kill off the steamy pavement. 

It was a Thursday, not the customary Wednesday, which means that the entire staff at the Cancer Center was different and I knew no one except the oncology nurse who gives me my Neup shots every other week. Luckily, she is the sweetest nurse I've met and I was so happy to have her inject me. When we arrived, all of the computer systems were down so they did not have access to records of my prescribed dosages, nor access to my past blood counts. My white blood cell count was low and they considered not giving me treatment, but it was decided that I could go ahead with it ... thank God. Nothing worse than getting yourself pumped up for something only to not get it over with. I didn't see the doc since my doc wasn't working, but 
somehow they were able to draw up my dosages and all was good. 

Also different, I did not wear my Minnetonka moccasins and I wore cropped yoga pants. This was not good. I forgot how cold I tend to get with some of the drugs passing through me, plus the AC was cranking. Next time, I will not venture away from my moccasins which always keep me feetsies at the perfect temp, despite the July heat. 

Despite all of these elements being out of whack, I received a flawless IV insertion ... a one shot deal. No wriggling and failed attempts. This made me breathe easy. She again felt through many of my veins noting the hard and collapsed ones, but was able to find a useable entryway to my circulatory system. She also gave me preventative Tylenol, which she said helps to counteract the flu-like, achey symptoms that I end up with as a result of the Bleomycin. I was then instructed to take Tylenol every six hours for the next 24 hours ... this was news to me. But I guess that's the bonus of getting to work with another nurse and getting another opinion. 

Though the insertion was good, the vein couldn't hang with the Adriamycin. I had what is called a vein "flare." The Adriamycin is one of the chemo drugs that is so strong that the nurse needs to administer it as a slow, push syringe, rather than through the IV drip. The nurse needs to sit with me through the process. Suddenly my arm started developing a red rash as a result of this "flare." She had to stop administering the drug and coated my arm in hydrocortisone cream then also started me up with an IV bag of Benadryl to decrease the flare-up reaction. Though the Benadryl didn't make me fall asleep as she suspected it would, it made me feel very woozy and uncomfortable. I was ready to leave after that, but still had the long and slow Decarbazene to go, my least favorite of the four. This is the one that burns through the veins, but with the help of a couple instant ice packs, the feeling is numbed. 

My mom and I popped in the DVD of the final Broadway performance of Rent. This helped greatly to pass the last couple of hours of what felt to be a marathon chemo session. I've seen the show I believe five times --- on- and off- Broadway, but now I see it in a whole new light. The songs and the lessons have always been meaningful and moving to me, but now being in a similar state of life, a person "living with, living with, not dying from disease" the lyrics ring true all the more: 

"No Day But Today." 
We hit up the Simsbury Farmer's Market on the way home (after a delicious bacon, egg and cheese on cheddar everything from Brookside, obv.). I picked up some snap peas, but had to sit on a bench shortly after getting there. The Benadryl really wasn't settling well. Then we had to pick up my meds at CVS and I thought that I might hurl right there are in Pharmacy "Pick Up" line. I did my yoga breathing and grabbed for a pack of peanut M&Ms, which instantly curbed the nausea ... crisis averted. 

Then it was home, finally home. I curled up with my prayer shawl and a Guiness glass of Miralax-filled apricot juice and settled in for a long, hard drug-induced coma. Sammy by my side as always. 

Thursday, July 16, 2009

I'm Gonna Eat Lighting and Crap Thunder

I'm going in for treatment 5 today, the start of my third cycle of ABVD. I wouldn't exactly say I'm looking forward to it, but let's get it over with. Bring on the poison. 

I had a "bonus" day of normalcy yesterday as my chemo was pushed off a day due to my oncologist's vacation. Because he went away, I got my own little vacation from the chemo recliner. The day was beautiful - the perfect temp and not a cloud in the sky. I set up my "office" outside and felt very accomplished. My work projects are in order, the house is "clean," the bills are paid (rather, at least in a pile of "to be paid"), I've caught up on e-mails and washed all the laundry. I'm ready to curl back into chemo ramificationess. 

Last night was spent under the stars at Simsbury Meadows at the Talcott Mountain Music Festival for a concert of Billy Joel music featuring Michael Cavanaugh, of "Movin' Out" fame and the Hartford Symphony Orchestra. We sang and danced to "Piano Man," "Pressure," and even "The Crocodile Walk" with our gang of T'ville neighbors and their adorable kids. Even better than the show, I got to catch up with many of my former Arts Council colleagues also there on the lawn. Truly amazing people ... it was great to see their always positive faces. Some people just always know what to say and do and that crew epitomizes those skills. 

All in all, it was a great run this time around.  I can't even remember the bad days. Let's hope the strength continues through this bout. Like my idol, Rocky Balboa, I've put in the training ... minus the raw egg breakfast shake .... and am ready to go the distance.  Cue the fight music. Now to face Apollo once again. 

Tuesday, July 14, 2009

Settling Down & Gearing Up

It's been a fantastic past few days. I've felt very strong, both physically and emotionally and I've been going through my bi-weekly exercises in chemo preparation. This means drinking lots and lots of water, packing in the fruits, veggies, antioxidants and fiber, walking (I'd even venture to say speed walking) every day and back to yoga tonight. On a non-health related front, pre-chemo prep means checking that I have all my meds refilled, doing what housework, bill paying, medical info filing and tying up of work projects I can in preparation for my remission back into mental and physical weakness after the next whop. 

My phlebitis has subsided. It was about three days of terrible pain and now it's completely gone. This is good. My fissures? Well, that's another story. We're working on it. Lots of prescription medication, fiber rich foods and fiber supplements. The goal is to regulate despite all the chemo effects and this will be the key to healing. My pain tolerance is getting better. 

I went into the office twice. I kind of decided for myself that it was safe to do this ... but I figured with my Neup shots and feeling strong it was okay. When the doc's away, the patient will play, right? My oncologist is on vacation this week, but I'm sure he would approve. He just wants me to limit my time in the office as much as possible so that I don't contract some strange hospital borne infection, which realistically could kill me ... so let's not play with fire. But I steered clear of the hospital proper and pumped frequent Purell squirts onto my hands. 

I put in a full day on Friday. It was great to see everyone, to be in my office, and to see the hospital farm stand that I've been working on come to fruition, but I could hardly stand up by the end of it. It did take a lot out of me, but I survived. Plus, I got to be there for my co-worker's baby shower, which I really wanted to make. 

Then it was right to the highway on the way to D.C. for my college roomie's engagement party. As my husband is an angel, Craig did all the 7 hours worth of driving and didn't even complain when I reclined the passenger seat and snuck in a few much-needed naps. I'm trying to challenge myself and test my limits when I am feeling good. The test results are not too hard to interpret. I probably did too much these past few days, but to me it was worth every minute. 

We had such a great time. Frankie and Steve are two of our favorite people in the world and when you're back with the person who lived with you day in and day out for four years, cancer is all but forgotten. We ate at our favorite D.C. joint: Chipotle. Yes, the 
chain. Why we don't have these in CT is a mystery to me. It is the best burrito in the world. We walked along the Potomac River and watched the planes take off. We got to hang out with Frankie's hilarious mom, step-dad and cousin and meet the rest of her and Steve's fam at the party. Her father lives in Virginia and his home is gorgeous. We celebrated outside on her Dad and stepmom's pool patio eating, drinking and laughing, a lot of laughing. I even had a glass-and-a-half of Pinot Grigio and a flute of champagne and was feeling pretty good. I guess I'm becoming a cheap date with my significantly reduced, if nearly nonexistent, new drinking habits. At least I didn't end up in the pool. 

It was great to meet her friends from down South. I realized quickly that they knew an awful lot more about me than I did about them. Her relatives, friends and perfect strangers were coming up to me remarking how they read my blog daily. They knew all about Sam-a-lam-a-ding-dong and all my chemo adventures. When they told me they read my blog, I usually answered with a laugh and "Oh, so you know all about my anal fissures?" I figured better to acknowledge the elephant in the room. I felt like a G-list celebrity or something. I'm not too hard to pick out of a crowd being the only one with a scarf on my head, but it was so touching to have so many people feel comfortable enough to say how glad they were to meet me and how much they were rooting for me. 

I learned that there are even more prayer circles than I thought that are including me in their talks with the "big guy." In Virginia and all over the country ... it's pretty crazy. One good thing about cancer is that it allows you to have instant connections with people and truly understand how powerful that is. I can literally feel the warmth and my spirit lifting when I hear that these perfect strangers truly care so much. How can I let them all down? It just adds fuel to the fire to fight this. 

Thursday, July 9, 2009

Phreakin' Phlebitis

I'm swinging back to the strong side of the pendulum. I'm pumped up with Neupogen shots - I've started calling it "Neup" (pronounced noop) for short to make driving to the cancer center for this little burning shot more fun. The Neup injections mean my immune system is alive and kicking again, well kicking against the cancer in my immune system anyway. The Neup doesn't give me as much bone pain as it did the first time around as I'm now receiving the white blood cell boosters earlier in the cycle. It does make me very tired though as my marrow is working extra hard to create cells. But if it keeps me from catching the cooties then I'm happy. As a back up I'm obsessed with continually squirting foaming, moisturizing hand sanitizer. 

My body is feeling stronger. My daily walk today turned into a run, okay, a jog, or more like a walk with a little more bounce and arm movement, but it was the most intense aerobic exercise I've had in more than two months now.  

However, my veins are another story. They are rebelling against the harsh poisons they've been subjected to. And I don't blame them, but I am disappointed that they're collapsing on me. I'm standing up to this, why are they tapping out already? After chemo three I was left with a hardened vein in my right arm that was tender to the touch. After this past chemo, treatment four, it's been my left arm and "tender" is putting the feeling very mildly. The vein insertion site in my lower left wrist is rock hard and elevated. I'm told this is because it's filling with scar tissue after being ripped apart by the chemo. But this time it's not just the insertion site that's sore, but the pain follows all the way up the vein following the entire length of my arm right to my heart. It basically feels like a tiny knife, serrated on both sides, is continually traveling up my vein along with my blood ... over and over as it circulates through me. 

Last night I truly thought my arm was going to explode. The pain was nearly unbearable. I made Craig sleep with the phone next to his head in case we had to call an ambulance and told him to keep checking on me every time he woke up. Poor guy. Low and behold I'm still here today and no 3 a.m. phone calls were needed. 

While in for my Neup shot today I told the nurse about my throbbing vein and was told that it's the ropes. It's extremely painful, but that's how ABVD rolls. She recommended hot compresses and Ibuprofen which help ease the knives a bit. She explained that my cocktail is one of the, if not the harshest of chemo treatments on the veins. What I'm experiencing is "phlebitis," an inflammation of the veins. This phlebitis is only going to phlebitisize itself more and more as the treatment goes on. If I keep going with the IV insertions I'm going to be left with very few viable veins in my arms by the end of this, and a lot of pain. She told me about a man my age she just finished treating. By his 12th chemo infusion she said they were grasping at straws to find a vein. She had used and abused beyond repair all the large veins in his arms and even the ones in his hands. She tied off my forearm to examine the veins I do have left and told me that I would really be cutting it close to make it through eight more injections. 

But there is hope and it comes in a little box inserted in the chest called a port. This port can be put in with a minor surgical procedure and can stay with me for the rest of my chemo treatment. The nurses and docs can use a special needle inserted right into the port to draw blood and send my chemo drugs right to a major artery in my chest avoiding the many needle pricks and all the vein prodding and destruction that I've been dealing with. It sounds like a creepy but good option. More research and a talk with my doc is needed. Until then, it's just me and the phreakin' Phlebitis. Combine that with the fissures and it's a regular pain party. 

Regardless of all of that, I'm feeling much more like myself again and am ready for a road trip to D.C. this weekend for my college roomie's engagement party. It'll be a welcome vacation and I am so incredibly excited to see her and her beau. 

Tuesday, July 7, 2009

Morning Brings Another Sun

Mornings are the hardest. Sometimes I wake up from a beautiful dream where everything in life is back to normal. Then with the shock of the alarm clock it all comes rushing back. The diagnosis, the aches and pain, the realities are all relived again each and every day. Yes, this really is my life now. And yes, it's time to face another day of this. 

My first moments of every morning are spent walking through it all in my head again, trying to find a way to make it not real. Maybe my biopsied lymph node was mixed with someone else's. Maybe my PET Scans were switched. Maybe I'm just achy from the flu. Then the morning pains set in. I squint my eyes open and stretch and realize that my legs won't extend nearly as much as they used to. I see the LIVESTRONG bracelet on my wrist. I feel the bulging, hard veins in my arms. I reach up to pull my hair back in an elastic band and then feel the stubble and remember that it's not there. I don't know if I'll ever get used to that first reflection in the mirror each morning. 

I used to quip "You can sleep when you're dead" when I was upset that Craig would pass out on the couch at 7 p.m. after a long day of teaching. Now I see sleep as an escape, a chance to rejuvenate, a chance to not feel anything but whatever I want to feel in my dreams. 

But then I get out of bed. I kiss Craig goodbye. I feed the dog. I make breakfast. I log onto work. The day begins and everything is okay again. I have a bright yellow graphic tee that reads: "Morning brings another sun." I used to think it was a pretty obvious statement, but now it holds a lot of meaning for me. Every day brings a new opportunity to fight even harder against this. It brings a new opportunity to enjoy something new, to make a new memory and to appreciate all the amazing things around me and realize just how lucky I am to be here. 

It just might take a little bit to get back to that mindset after each morning's jolting alarm and reality flood. 

Monday, July 6, 2009

Dirty Words

I'm back to my brown-nosing, over-achieving antics again. Went to the colo-rectal surgeon today to discover that I have not one ... not two ... but three fissures. A trifecta of pain, just what I was seeking. Already feeling woosy, tired, blood pressure very low, and knowing that I probably shouldn't be on my feet, I got to have my bum on display again. Or my "sore bottom" as the doctor called it. I'm all about education, but this was a very tight exam room and in it was jammed me, the doctor, her internist following her for the day, and a nurse, all peering at my bare bum hoisted in the air. Again, humility is long gone. 

These are the things that nobody talks about but apparently are pretty common for people going through chemotherapy. Anal fissures certainly weren't the first thing that popped into my head when I got my cancer diagnosis. In fact, I did not know what they were and would have been fine going my whole life without finding out, but it makes sense that they come with the territory. 

My body is all out of whack from the cancer and the chemo drugs. The drugs cause constipation and diarrhea at alternating intervals. With no idea what to expect from day to day, my cute little colon just doesn't know what to do. The worst part is that my body can't heal itself like it should as a result of the chemo, my reduced immune system, and infection fighting agents so it just keeps happening over and over. Like being pulled through a shredder that tender skin is now literally torn in a few places, by definition: "a small tear or cut in the skin that lines the anus" I now know from my handy-dandy pamphlet entitled "ANAL FISSURE" in big, bold, white letters. At least they put it in a paper bag. I left with all of these brochures, prescriptions, ointments and samples as if I was leaving a porn shop with an unmarked bag full of "dirty things" no one discusses. 

Could they at least come up with a better name for this? Women are supposed to fart butterflies and potpourri, not have to deal with anal tears, right? Well apparently not this girl. So as the doctor recommended, I will apply the creams "like I would lip gloss" and grin and bear this new development. 

Friday, July 3, 2009

Chemo Day Four

Wednesday was my fourth chemo infusion, that means I'm one-third of the way through treatment (fingers crossed.) As much as the process is becoming old hat, there's always some sort of surprise that happens. This time around, I got especially intimate with my oncologist. 

The routine goes like this: greetings with Dr. Dailey's assistant, usually a "Hey, girl!"; weight check, vitals and blood work with the lab tech, always mixed with a lot of laughs --- she's the best; wait for the printout of where my blood cell counts are at with fingers crossed that I'm strong enough to go through treatment; then I meet with Dr. Dailey to catch him up on how I've been feeling, ask questions and talk over where we're currently at in the cancer-killing process. 

I filled him in on my "bad week," told him how my night sweats were back nearly every night and how I had extreme fatigue and how it took me much longer than it had after past infusions to recover. I also told him about my fun new developments in the colo-rectal area. From the beginning of all of this and the constipation/loose bowel battles, I've had some issues with what seem to be hemorrhoids (added bonus to all of this) and seem to be getting worse and worse daily. With my new cancer-killing power diet of veggies like spinach and kale, high-fiber granola, raw nuts, flax seeds, tofu, fruit, fruit and more fruit and ruffage I've been much more regular, but this also means much more action in this delicate area. 

After hearing my report, I got a pretty thorough exam --- Dr. Dailey palpating my lymph nodes, my abdomen, listening to my heart and lungs. He assured me that my lymph nodes are ever smaller, now more pea-sized (this is very good). He also told me that it is a great sign that my red blood cell count has not dropped. It says a lot about the strength of my body that I'm still able to produce red blood cells despite the Hodgkin's and chemo effects. 

Then, in his calm and assuring way, he says: "You know, I should just check your rear end if you don't mind." Oh, dear. This is what I mean about getting intimate, but really, I've lost all sense of humility being bald, arms like a pin cushion, red faced and all the other odd accoutrements of a chemo patient. So with my mom, the nurse, as my witness I lean over the exam table and drop drawers for a doc's looksie at my sore anal area. It took everything in me not to burst out laughing. Well, low and behold, I have at least one visible "fissure," a fun tear and likely more internally. Apparently this is very common for chemo patients. Because my ABVD cocktail indiscriminately kills good and bad cells, my body's ability to heal itself is much decreased so with each passage means a further rip. So after recovering my bum, he hooked me up with an appointment with a colo-rectal surgeon, we'll see how this goes. Again, always an adventure. 

Then it was time for the drip, drip, drip of the chemo. I donned a "Kickin' Cancer's Ass" t-shirt Craig got me for birthday and that elicited a lot of laughs from everyone. I'm also learning other tricks for each time around. I wore yoga pants, much easier on and off when I only have one hand to work with on the many, many pee breaks I take throughout the process since my other hand is tethered via needle to the IV drip. Comfort and easy access are key. I remembered a hot/cold cup to keep my ice chips in so I don't end up dripping the melting cubes all over myself, and opted for easier, bite-size snacks so that I don't fill the recliner with crumbs for the next chemo patient. I also got the courage to ask for the private room since no one was occupying it this time around, and this was fantastic --- I was able to play my music off my laptop (which my nurse also enjoyed), watch TV on hulu, talk (not whisper) with my mom and play online games without worry of disturbing the other patients napping or reading as they zone out during their own treatments. And the best part? Craig stopped in to visit for a couple hours between his summer courses so he got to enjoy the fun that is chemo day with me ... this certainly made my day! 

Sadly, I learned that one of my veins is shot. It had been sore and very hard and tender. Turns out this can happen from the immense stress the chemo drugs put on it. It is now disheveled and filled with scar tissue. So, we moved to the left arm and had a very clean insertion, not even in my inner elbow which was fantastic and made typing, eating and reading much easier. The drugs burned  bit more in this smaller vein, but for every yin there is a yang I suppose. 

Now, I'm feeling decent, loaded up with steroids and anti-nausea drugs. Just tired and a little nausch at times. Still haven't thrown up and very proud of it!