Selective Memory

I've been feeling pretty good. And the better I feel, I realize how badly I felt for a long time. It's amazing how your mind and body can just compensate and make the most of the situation no matter how much you're hurting. I guess that's how I got to be at such an advanced stage of cancer ... .

It definitely feels good to feel good. However, I certainly wouldn't say I'm 100%. I still get pretty tired at the end of every day and don't have my full pep back. Turns out it could take up to a year for that to happen. Other than that, I just get some occasional chest pain and a lot of chest tightness.

Nonetheless, everything still works. We went on a very, long hike today and once my heart rate leveled off I was fine and very proud of myself. I've had to do a full eyebrow shaping and am back to shaving my legs and underarms (the one negative in all of this)! My hair is now fully covering my head. So much so that tomorrow I'm going into work without the customary head scarf I've been wearing for so many months. You can still see my scalp a bit as it is very thin, but there are no more obvious bald patches. I can't believe how fast it has all grown back. It really seemed like one day eyebrows and hair just reappeared. It's not red and it's not curly like Shirley Temple as many warned it would be. But it is very dark and I love it. I suppose that this is in fact my natural color. I guess I didn't really expect it to grow back with vanilla blonde highlights.

I've been working a normal schedule and keeping up with the busy schedule of holiday parties, shopping, snow shoveling, Christmas tree trimming and everything else that comes with this season. It's very hard to even remember when I couldn't do these simple things.

But it all came rushing back when I had a follow-up appointment at the cancer center this week. I suppose this is what's going to happen for the rest of my life while I'm constantly watched for any signs of cancer coming back. Hopefully it will get a little easier as time goes on.

As soon as I walked into the waiting room it brought my right back to my treatment days. Vulnerable. scared. uneasy. lots of anxiety. But I was able to recognize the fact that this time I was there as one of the post-chemo survivors I had always seen bopping in for quick check-ups, hugging and catching up with the nurses. And that's exactly what I did. It was great to see the team even though doing so meant I had to get my finger pricked and my port stuck.

It was most surreal to see my oncologist. I got all welled up sitting there in his room waiting. I could literally feel all the emotions swirling back throughout me. I thought I was going to lose it and just start crying as I remembered my own journey and watched so many others pass by the door at various stages of their own. But I held it together and just felt so incredibly grateful to be there painless and with a clear head.

Dr. Dailey sat down right next to me in his little exam room in the Hartford center and he asked about my post-chemo progress. He felt my lymph nodes on my neck and collar bone, under my arms. All signs point to the all-clear. But even so, he still wants to do one more PET-CT Scan before removing my port. Sigh. January 15 is the big day. If the scan is completely clear then we schedule a port removal surgery and I'll then be followed with a CT-Scan every six months. We talked about planning a pregnancy around my scans (very romantic) as I can't be exposed to radiation while pregnant. He advises that we wait until at least next January to start thinking of trying to build a family to be sure that my body is strong enough and all the toxins are out of my system. It all sounds like a great plan.

Then it was in to see the nurse to have my port flushed. Since it's not being used, I need to come in every month to get some saline and special concoction pumped through it to ensure there are no chances of clotting or build up of fibrous tissue within or around it. So it was another deep breath and needle jab ... hopefully I'll only have to go through that one more time.

After that appointment it's been back to holiday happenings, and I'm very much looking forward to Christmas and Hannukah with the fam. So much to be grateful for this year ... the gifts of the season take on a whole new light. Like all the cards and commercials say, I really am looking forward to a happy and healthy 2010.

Chemo Day 11

I always blog about my treatment day experiences several days after and realize that much is probably lost in the interim. So, because for some reason I have not been able to sleep after this treatment, I will write. Forgive if this makes no sense whatsoever and is riddled with bad grammar and punctuation. I blame the drugs.

Today was number 11. One away from number 12, the final infusion in my chemo regimen. That means I can now say: "Just one more to go!" That sounds much better than the days when six months and 12 treatments were set up as obstacles ahead of me. I've hurdled over nearly all of them and honestly, it's hard to believe.

This morning I worked from home for a couple hours. In fact, worked right up until the last possible second before I had to get in the shower and pack my chemo bags. Avoiding the inevitable, I suppose.

No funny chemo t-shirt today. It was too cold out this morning so a henley and a toggle tie wool sweater were in order. It turned out to be a wise choice, though when the sun came out it was much warmer. It was a wise choice because there was a lot of action in my port site today and the button downs made it that much more accessible.

Weight was stable. White Blood Cell count and granulycytes were very low as usual, but not as scarily low as before the last treatment. Blood pressure was good but heart rate was up. This was noted both by Denise (my fav lab tech) and Dr. Dailey but to no huge concern. My nurse chalked it up to anxiety. I hate to admit it, but yes, I did have a lot of anxiety today. In fact, I may have experienced what some may call a minor anxiety attack ... . It again goes back to the counterintuitive nature of chemotherapy. I might as well walk up to one of those beefy men who pull 18-wheelers via straps held with their teeth in those Strongest Man competitions and ask him to punch me in the face, then kick me around about while I'm wriggling on the floor - a couple of swift ones to the gut and the lower back. Of course I have anxiety about arriving there. Every time I know better what the effect will be on my body but yet I'm the one walking my body in. I almost lost my breakfast in my mom's car and then in the red bin full of discarded fluid bags and bloody gauze. My chest pumping "bring it on," "eat lighting and crap thunder" attitudes I used to plow into the Cancer Center with. Now it's more like "let's get this shit over with."

Our meeting with Dr. Dailey was again very positive. He checked my lymph nodes, noting that my neck is still lumpy and asymetrical but nothing to be concerned about. Many of the lymph nodes may be scarred from being stressed so wide when filled with the cancer and this may never heal fully. He also said that I may need to see a neurologist if time does not heal the dead leg I experience in my left shin/outer leg area. That's okay, I can deal with a lumpy neck and a leg that works, despite its numbness. He seemed very impressed with how my body is still responding so well to the ABVD. I had been expecting these last few to be the hardest yet, but they've really proven to be quite manageable - or maybe my expectations of what it means to "feel good" have just been lowered. Next steps: final chemo treatment Oct. 21 (big day, very big day) then another PET/CT Scan. In my last PET/Scan, though he declared me in remission, there is one area near my sternum that showed some "hot spotting," but Dr. Dailey is doubtful that it is cancer presence. We both hope that the spot is gone altogether in this next scan.

We were then escorted to one of the private rooms where my Mom and I got comfortable. My anxiety doesn't really go down until the port needle is inserted and the meds start flowing. That's when I can breathe a little easier and the nausea subsides. These feelings weren't nearly as extreme in the beginning. I think everything is just accumulated over such a protracted treatment regimen. My nurses' sighs as she was trying to draw my blood vials led my anxiety to new heights. Try as she might, my port just was not cooperating. Every treatment she draws blood for testing, in addition to the CBC finger prick that I get. My port was flushing well and accepting the pre-meds no problem, just not giving back. She explained that there might be a fiber or some clotting behind it. Despite how much she assured me that that's very normal to happen, I was pretty shaken up thinking about a clot traveling from my port site to my brain and leading to horrible things ... . But apparently those worries are unfounded and I'll trust the experts on their word.

Because the port was taking in the meds no problem that scene went smoothly. I get more woozy from the anti-nausea and steroid pre-meds. My vision blurs a bit and my processes slow. I get giggly and goofy and everything feels a bit off. Add to that my shaky hands and tight muscles as I unwound from my anxiety frenzy and the first hour was a bit rough. But my mom held my hand and relaxed me and I just kept apologizing to the nurse about what a baby I've become because again, Karin pre-cancer wasn't someone used to anxiety - nothing could throw me into a tizzy. Thank goodness for the visualizations and breathing I've learned in yoga that helped to get me back to reality.

We popped "Confessions of a Shopaholic" into my laptop – fantastic chick flick – and that really helped to pass the time from A to B to V to D to bag of saline. When the meds were done, we tried again to get some blood from my port. It spit and sputtered a bit but not enough to clear the tube and fill a vile. She had me lean forward, lean back, raise my arms, but nothing worked, so a needle in the hand it was. Luckily my nurse is fantastically steady and skilled at getting it in painlessly so I just turned away while she kneeled on the floor and I made a fist with my very sweaty hand. The blood was taken and I was free to go.

It took me a bit to stand up and get my bearings and I don't really know what I was saying when I was talking to the secretary to schedule my next appointments. Leaving there is like waking up groggy from an unexpected nap – the reaction time and processing speed are very sllllooooowwwweeed. This is why I do not get behind the wheel and instead rely on Mom to chauffeur me to CVS to pick up my take-home drugs then to lunch for whatever I may be craving. This week it was a hot chicken parm sub, but once I saw the menu it was a Caesar salad and spinach-and-gooey cheese calzone that did the trick of absorbing all the chemicals that were making me feel uneasy.

Usually I crash once I get home but it's now 8:45pm, I've been up since 6:30am and have not slept a wink. Lots on the mind I guess? I've been glued to the couch, watching Ellen then Oprah, doing lots of Facebook stalking. Then I ate more when Craig got home - some delicious homemade chicken soup my mom brought over. I feel on-and-off hot flashes, the room spins and blurs a bit and I have to proceed with caution on any attempts to get off the couch for fear of seeing stars or inducing nausea.

The body pains have already started and that just makes me sigh. Blah. I get these pains throughout my legs especially which make them feel very heavy and very tight. My hips pop and creak and my hamstrings and Achilles' tendon are so taunt I feel they could snap at any moment. These are the same hamstrings that carried me through a 15 minute run with no breaks on Sunday morning followed by a day on my feet at the fair. These are the same hips that bent easily into the pigeon pose at yoga Monday night. For the 11th time I again feel a bit beaten and broken but I know that it will pass for an 11th time.

I looked in the mirror on one of my many bathroom trips. The only time I don't have much of a choice but to look at my reflection. I look like a completely different person than the face that stared back at me this morning before leaving for chemo. My eyes are bugged out and glazed amplified by dark circles beneath them. My usual healthy color is gone and I look like one of those drug addicts you see on the made-for-tv movies.

Luckily, I have a husband and a dog that shower me with affection despite the fact that I look like a man with a very sad hair-loss problem, with a face that's a little green, the three-second memory of a fish and the attention span of a two-year-old. Right now they're each cuddled on my hip (those are my legs under the fuzzy blanket) and watching the Yankees game and I couldn't feel more assured that it's all going to be okay no matter what.

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. 

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.