Paranoia

After two bouts with cancer it's tremendously difficult not to worry about it coming back again. And maybe "worry" is even putting it too lightly. More like obsess over, dwell on, let it encompass everything.

I'm still in that awful waiting period – post-treatment/pre-PET Scan. The period of uncertainty as right now I have no hard evidence proving to me that the cancer is completely gone, that everything that was thrown at me worked. Until July 6 comes I remain in limbo and limbo can be a ruthless place if I let it get that way.

I'm doing my best to keep control of the situation and to keep my mind in check but it is certainly not an easy feat. Complicating this is the fact that I have a couple lymph nodes that have swelled to abnormal sizes above my right collar bone. They wax to the size of a ping pong ball and wane to the size of a red kidney bean. One is malleable while the other is smaller but more solid. There is also another familiar gumball presence in my left armpit. They all ache and pulse at times which is how I discovered them in the first place. I don't have to explain how this sends my paranoia aflutter and brings back horrible recollections of my original diagnosis.

Dr. Dailey palpated them last week and didn't seem too concerned noting that lymph nodes can swell for many reasons and that mine are going to be swollen and stretched for a long time after what they've been through. I've also been feeling pretty off with a lot of fatigue, some chest tightness, gland swelling and just overall fullness in my upper respiratory area. Plus, a lot of phlegm-like junk floating around. This makes me feel better keeping the hope alive that I just have normal person allergies or a little sinus irritation which would be causing my lymph nodes to flare up as they send out white blood cells to work to fight it. I also have to remember that I'm not even a month out of transplant. I'm coming back from being at absolute zero and have to keep reminding myself that it's not going to be a quick and easy healing process. These things take time.

But no matter what, those bad cancer thoughts creep in and that takes a physical toll. I've been very tired and achey and I've come to realize that it's stress. Over the weekend I was with friends and family doing fun things and anytime that is happening I don't feel it. It's when I'm alone and my mind can wander and my hand keeps reaching up to palpate those nodes that the tension sets in. And that's no good for anyone.

So, the only logical solution? Take a cruise. As the emotions of everything that we've been through – from embryo freezing to days upon days in the hospital – started to set in, we realized that we needed to get away to a place where we could relax, be entertained, explore ... not have to worry about cooking, cleaning, bills, doctor's appointments, lymph nodes. So I got the go-ahead from both my oncologists and we're off to the Eastern Caribbean for eight days. San Juan, St. Thomas and Turks & Caicos here we come! We have so much to celebrate and so much to be grateful for so Craig and I are taking this together as a 28th birthday present to each other and a post-transplant extravaganza. The week after we return I'll be going back to work, at least part-time, and Craig will begin his summer job so this was the perfect time to take advantage of the downtime that we both had.

It'll put us both in a good place to be able to face whatever the PET Scan may reveal. For now, rather than letting that worry control us, we're going to make the most of this time that I am here and am feeling good (enough) and most importantly, not tethered to an IV pole. Freedom for the first time in many, many months.

I'm so looking forward to snorkeling among the fishes and smiling into the Caribbean sun.

Wigging Out

After all of my resistance to getting a wig over this past year-and-a-half of baldness, I suddenly had a change of heart. When I lost my hair the first time back in June 2009, a wig wasn't a consideration. I didn't think I'd be able to pull it off, didn't think I'd be comfortable in it, and embraced the idea of barring my bald head with pride. I still am very comfortable in my own skin and proud that I've been confident enough to go with bandanas, hats, or nothing at all over all of these months.

However, when the loss of eyelashes and eyebrows were added to the mix, things changed. The high dose chemo that preceded my stem cell transplant has left me with a cluster of three upper lashes on my left eye and two clumps of two lashes on my right eye. I have zero bottom lashes and not one eyebrow hair. This bothered me much more than losing my hair did as I felt it stripped away the last piece of surface femininity that I had. I've always played up my lashes, especially while bald, as it was an obvious way to show that I was still a woman and still somewhat healthy. Having no hair anywhere makes me feel like I am a very sick patient and I can't bear the pitying, confused or horrified looks I receive from strangers.

So, I decided to go wig shopping to bring back a little fun and style to my life. My mom eagerly accompanied me as she's been waiting for the day when I would cave in and give it a try as she knew how desperately tired I'd become of being bald and of looking like a cancer patient ... especially now that I am no longer in patient mode.

My main reason in pursuing a wig was to have it to wear when I go back to work in a couple of weeks. As my hair was growing back last time around I wore a scarf on my head to work every day. It certainly got old after a while. I was always fussing with it and it was always hard to match outfits. I couldn't wear any patterns and none of my fun, funky jewelry or accessories as the scarf always took top priority. I realize how petty that sounds, but it's different when you want to desperately to feel normal and not have anyone question your abilities.

Plus, the scarf was a pretty dead giveaway that I was a cancer patient. Now that I'm done with so much more treatment I want to put it all behind me, and with a wig at least I won't look like a patient any longer and hopefully that will translate to quicker healing on other fronts. Obviously those that know me at work will know it's a wig and that doesn't concern me in the slightest. The tough thing was always meeting people for the first time and knowing that they're wondering why I was wearing a scarf, struggling with whether to say something or not ... that gets very old.

So there we were at Nationwide Wig Imports in West Hartford. I've driven the road it is on many times before and never noticed that the place existed. We walked in to be greeted by a slew of blue eyeshadowed red lipsticked mannequin heads donning wigs of every color, length and style peering out at us from shelves upon shelves.

'"What have I gotten myself into?" I thought.

Then out came the owner who immediately made me feel at ease and suddenly we just got started. I would point to something that caught my eye and she placed it on my head as I sat in the styling chair facing myself in the mirror. Some I quickly wrote off with disgusted faces. Some I hemmed and hawed on. And then there were the ones that absolutely shocked me. They made me feel so pretty and they looked so incredibly real – after the initial shock set in.

My mom, the owner and I discussed the merits of each until I narrowed down the choices. We were there for a solid three hours or so ... I've never really been a quick decision maker. You should see me in the cereal aisle.

I went in with the plan of getting a short pixie cut so that when my hair did grow in it wouldn't be such a harsh transition from wig to natural. I came out with a long, layered wig reaching past my shoulders with sweeping bangs. I decided to throw practicality to the wind and go with what made me feel pretty, maybe even sexy. These are things that I haven't felt in a long time. When I put that long wig on it almost brought me to tears. I didn't realize how much I missed having long hair to play with and didn't realize how much of a difference a wig can make in my self esteem. With it on, my looks matched how I felt on the inside.

Another woman came into the store and remarked how great it looked on me. Then when learning of my wig aversions the owner told me how she has so many clients that are traveling businesswomen who find it easier to wear a wig than to worry about styling their hair every morning. When I realized that there are many more wigged women in the world than I would have thought, I was sold.

I like to think that it looks like the gorgeous hair of Audrina from MTV's The Hills, a guilty TV pleasure of mine. I figured that it will be years before I ever have long hair of my own again, so why not have fun with it now when I can choose any style that I want? It'll take some getting used to that's for sure ... and some stretching to boot. Right now it leaves me with uncomfortable forehead invitations, which doesn't make for long wig-wearing outings. But it does the trick. Added bonus, it was completely covered by insurance so why not?

I completely took Craig off guard with it. He didn't know I had ended up getting one and when I came down the stairs he said:

"Oh my God. You look like you're 17!" as that's the last time I had my natural dark hair and it cascaded to that length. He likes it and likes that it makes me feel confident, but says that he certainly prefers me au natural. I suppose I should be flattered by this.

It's only made it out in public twice now. I wore it out to dinner with my family for Craig's birthday. The shocked looks were priceless. One uncle didn't even recognize me and the big joke of the night was not to tell Karin about the hot date Craig brought out. Then I tried it out on some of our friends who were equally shocked and impressed with how it looked.

I have no plans to wear it at home or on a normal basis. Just work and special occasions when I feel like getting a little gussied up. It'll take a while to get used to, but right now it's a fun novelty. I'm sure I'll be ripping it off as soon as I reach my car to drive home from work every day, but the excitement about being able to brush it and wear a low ponytail again outweighs that. It's funny the things that you miss ... .

Rehab

Like Lindsay Lohan or Tiger Woods I have been – and continue to be – in rehab. Though my rehab isn't as glamorous as crack or sex addiction. Just another cancer patient trying to get my body and my life back to a less tumultuous state. And it's a self-inflicted rehab so no ankle bracelet needed to alert the authorities if I get off track.

Every day has been a little bit better than the last, which is encouraging for sure.

My taste buds have really made a comeback. I had wild mushroom, spinach, goat cheese and pine nut stuffed poblano peppers last night and was melting at the party of flavors. It's wondrous not to have everything taste like Metamucil – or like nothing at all. The appetite is getting there as well. Still small, but it's nice to know the feeling of hunger again. With the start of the summer season also started our first season as part of a crop share with a local farm. The CSA allows us to have access to a bag full of fresh fruits and veggies every week, plus access to pick-your-own herbs, flowers and more veggies. I'm psyched for the local, chemical-free nutrition.

My legs were covered in raised flesh-colored bumps which made my skin feel as if it were covered in fish eggs but now a week after they popped up they seem to have subsided. However, they have moved to my face. When I run my hand over my cheeks and nose it brings back shudders of my horrible middle school acne days. The bumps are at times itchy and a bit red but I think more noticeable to me than the outside world – at least that's what they tell me. But I'm assured that they will move on out just as they did from my legs. If that's the worst that my body is reacting after what happened to it, I'll take it!

I've been going to yoga, hiking, walking and even had a day of kayaking. I'm taking it slow and being patient, but I don't let a day go by where I don't push my body to do something to get it back into shape. It spent way to much time atrophying in a hospital bed. Yoga class is hard for sure, but I really enjoy being back at the studio. I like having the instructor there to adjust me as needed and to be surrounded by others with a similar mindset in such an encouraging and welcoming atmosphere. I'm at once amazed at how much strength and flexibility I lost over the past few months and at what my body is still capable of and the strength it held onto. I can walk for miles on end on flat ground without a problem. My endurance remains but it's the uphills and quick exertions that are tough. But as I said, every day gets a little bit easier. I will be running the 5K in the Hartford Marathon in October ... if not an earlier race.

I still need a daily nap, but the nap duration requirements have lessened. An hour is ideal and the pass-out point usually happens around 3pm. That's when I hit the wall. I wake up several times throughout the night and look forward to an unbroken sleep some day.

Overall, I'm just listening to what my body needs and trying to comply ... though pushing it past its limitations at times as well.

The timing of this rehab period couldn't have been better if I planned my cancer relapse myself. The weather is beautiful this time of year and the sun and warmth and thunderstorms and passing showers are nothing less than cathartic. So is time with Sammy the wonder dog, always good for a loving snuggle or a raucous romp through the woods. Craig is wrapping up school next week and will have a couple weeks off before his summer gig so we can spend time healing/enjoying life together.

The plan is for me to ease back into work after the July 4th holiday. I'm really looking forward to getting back and to restoring my sense of purpose while being part of the greater community. It'll also be nice to feel like an accomplished adult again rather than a sick little kid.

Now if my hair, eyelashes and eyebrows would start growing back then at least I wouldn't look like a cancer patient anymore, but I won't be escaping that anytime soon. I'm as hairless as the Pistons' Charlie Villanueva, but not nearly as good with a basketball.

Desperation

I did not write much while I was in the hospital because I was so excruciatingly weak that I just could not do it. I never thought that would happen, but it did. I was almost afraid to write because then it would make what was happening real – documented forever.

Now that I'm removed from the setting and feeling much more at peace in my body and my mind I can reflect and express with more freedom from the "other side."

There were a couple of nights in the hospital that I thought it was the end. I've never, ever during this entire year-long battle thought that I wasn't going to make it. If I did think about dying it was for a fleeting moment and I was always able to push it away quickly and violently. However, after several days of unending fevers and unsatisfied sleep, my mind got the best of me. My biggest fear going into the stem cell transplant process was that I would acquire an infection that my body would not be able to fight. There are two people that I know of that did not make it through to the other side and it was because of an infection – not the cancer, not the chemo, but something that overtook them while their immune system was down and they could not recover.

When my fevers started getting up to 103, I feared that this was also my fate. The buzz of hospital bells and IV alarms, as well as the every-four-hours vital checks, kept me awake in the hospital, but so did this fear. I was afraid that if I fell asleep that I would not wake up and that no one would find me until the next round with the vitals machine. A couple of times when I would doze off I'd wake up with a jolt, screaming on the inside, gasping for breath and trying to understand where I was.

As the feverish days and nights continued I found myself praying. I did not know who I was praying to. I begged he/she/it to save me. I promised that if they did I would do so much good in the world. That if I was spared, if I was chosen to make it through this that I would be forever grateful and that I would dedicate my life to making the lives of others better. I'd find myself crying as I begged for my life as I spoke – in whispers – to this ominous being telling them that I was not done, that I was not ready to go. My tears were different tears than I'd ever felt before. They spilled and trickled out in such a natural and sincere way. They weren't violent or stinging. They were cleansing, involuntary tears.

I had fought so hard and made it through so much that the idea of something as simple as a cold virus killing me was just not acceptable. I could tell in the eyes of all the doctors that they were very concerned as much as they played it cool and kept ordering a strong arsenal of antibiotics ... nothing was working.

It's funny the things that you do and the things that go through your mind at a time of such vulnerable desperation. I thought about my funeral, about who would be there, about who would speak and what they would say. I thought about Craig and Sammy and cried as I thought of them alone in our house. I thought about my life and what I've done with it up to this point and I tried to come to terms with the fact that I had lived a fantastic life and done so many things and had the privilege to truly love and to truly feel loved by my family, my friends, complete strangers. I felt comforted that if whatever the source of these fevers was was going to take me that at least I had no regrets and that at least I felt I had lived my life as fully as I could. But at the same time, I knew that I had so much more fight left in me and that I had so much more that I wanted to do. But I became very, very scared and started to lose hope.

I wrote an e-mail to my close friends and in my head it was in a way a goodbye e-mail though I didn't say that in so many words. In my head I wanted them to know what I was feeling and I wanted them to know how much I cared about them. Then I thought about the hundreds of people that I had behind me, that I knew were also praying for me to all of their different gods and I kept thinking 'I can't let them down.'

Of all music, I chose to play Vivaldi on my iPod to try to relax myself. It brought back memories of Sunday mornings at my grandparents, waking up to classical music playing and the smell of Red Rose tea and buttery toast. It took me into a deep, distant place that I'd never been before. I was so, so scared. I kept thinking of the "fight or flight" lessons in psychology and thought that if I conceded to the fear, that if I relaxed into it and accepted that I was going to die, that I would be sending my body the message that I was ready, that I was done fighting, that it was okay to give up.

So each morning I would push away the fears and the tears of the night before and get out of bed, shower, do yoga stretches, work out with my exercise bands, watch funny movies and laugh like a normal 27-year-old. I was strong for my parents, for my husband and I never told them how I truly thought that I was going to die. I thought that if I said it out loud that it would happen and I didn't want to take that chance. I had to make sure that my mind stayed strong so that my body would follow suit. Then by the grace of all the Gods it did.

The doctors told me that my white blood cell counts had recovered and that this was likely what I needed. I distinctly remember Dr. Cooper saying that there is no better medicine than my own immune system. Like the little engine that could, my bone marrow started pumping out a white blood cell army that narrowed in on whatever it was knocking me down and took it out with a wallop of healing power. The power to fight the infection was inside me all along. When they held that thermometer under my tongue for the umpteenth time and my temperature registered at a cool 98.6 degrees I knew in that moment that I was going to live. I was chosen to be saved.

I am so forever grateful that I was spared and am so humbled and proud of my body and of my mind and my heart for getting me through. Now I have a great urgency to do so much with my life, but at this moment I am so very, very tired and am working on reintroducing myself to the world in baby steps ... baby steps.

Pardoned

This past Tuesday my parents took me back to Smilow for another check of my bloodwork and a breathing treatment to prevent PCP pneumonia. It was also the day that I found out the next plan of action.

All of my blood chemistries came back normal. I didn't need any transfusions or electrolyte repletions – great signs that my body is doing what it is supposed to be doing, rebuilding.

The breathing treatment was a little odd, but no big deal. I've never had to take an inhaler in my life so it was a bit strange. The respiratory therapist took me into a room and had me suck two puffs out of this big inhaler tube to take in the medicine. Then he hooked me up to a nebulizer which was basically like breathing in and out of a big peace pipe. I had to "breathe normally" (as easy as that is) while wet, medicated air flowed in and out of my lungs for about 15 minutes. I choked on it a couple times and drool dribbled down my chin, but I recovered. I'll have to repeat this treatment twice more over the next few months as a preventative measure.

Erin, Dr. Cooper's APRN, came to see me as well as my transplant coordinator, Kathryn. So, next steps? I have an appointment with my local oncologist, the esteemed Dr. Dailey to check in and get him up to speed on what took place during this whirlwind two months since I've seen him. I'll now be back under his care. Then it's back to Smilow on July 1 where I will receive another breathing treatment and lay in the tunnel once again for a PET Scan. I'll then meet with Erin to go over the scan results. The hope is that all the chemo worked and we can say officially that I am in remission and cancer-free. On my last scan after the ICE it was determined that there were no visible signs of cancer, though there was one area in my chest lighting up – it was read as non-cancerous (possibly my thymus gland being super active?). We're hoping that this is completely gone at this point. If not, then we'll have to look at some other options to rule out cancer activity with more certainty. I'm confident that my scan will be clear ... though nervous as hell.

My restrictions? Stay away from obviously sick people. Continue my antibiotic three times a day for six months. Come back for check-ups with Dr. Cooper at 3, 6, 9, and 12 months post transplant. Continue on the no sushi, no digging in dirt restrictions. No gym for at least two weeks while my platelets continue to recover (yoga class is fine so I'm back at the studio every day). Get lots of rest. Drink lots of fluids. Listen to my body. Ease back into work as I feel ready. Other than that, as directly quoted from Erin: "Eat, drink and be merry."

They de-accessed my port and sent me on my way – a whole month of freedom. My parents went to use the restroom and I went out into the meditation garden for one last time. As soon as I heard the babbling river and was surrounded by the zen stacked rocks and exotic trees I just lost it. I had worked so hard to stay strong for so long and now that I was granted release it all just came flooding out of me – everything that I had been gritting my teeth to hold back so that I could pile drive through the hurt, the pain, the frustration and the fear.

I sat on a bench and just started shoulder-shaking crying. There were other patients out there, but I didn't care. I just stared out at the view overlooking the city as tears streamed down my face. Hot tears of pure relief and release, a physical symbol that I made it through. I sat there thinking about all of the previous times I was out in that garden – always with an IV pole attached to me, always with at least a mask on, other times with gloves and a gown to protect myself. But that day I was free to breathe in the air and to touch the weathered wood of the bench with my bare hands, run my fingers over the ridges and elevations of the stones.

My parents came out and found me red-faced and teary-eyed and sat on either side of me as together we took it all in. The fight from hell was over and we all felt a whole lot lighter.