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. 

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. 

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. 

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. 

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!