This past St. Patrick’s day turned out to be a lucky day indeed. It reminded me of last November when I saw the plus sign appear in the small window of a home pregnancy test kit. Depending on how you look at it, one could feel extremely happy and lucky or nervous and scared. It was a little bit of both.
Then a week later, I found this:
It’s like winning the lottery three times!
I took it as a sign and felt super lucky that I was gonna be a mom all over again. Little did I know, that I was going to be the lucky one to have a miscarriage. Before I could even process the loss of such love, my luck got even greener. I was the lucky one to have a miscarriage due to a molar pregnancy and even luckier to be the one to have a complete molar. Then I really won the lottery to have a benign molar become cancerous.
Humor my sarcasm here because in my own twisted mind, these are great odds, I should go play the lottery. I mean, look at these stats:
About 1 out of 1,000 pregnancies in U.S is a molar pregnancy (that’s me!)
About 1-2% of women who’ve had a previous partial mole (that’s me!) will have another molar pregnancy (me again!).
About 2 to 7 of every 100,000 molars become invasive and develop into gestational trophoblastic disease (winner winner chicken dinner!)
… and I won all 3 times! Despite all this, I do feel extremely lucky… because although my mole has returned, it has not metastasized and become choriocarcinoma where it can quickly spread to other organs like the lungs, liver, and brain. For now, I’m feeling pretty lucky.
An Interesting Observation
I also feel extremely lucky to be surrounded by so much love. When I decided to share my story, I cringed the moment I hit the “publish” button. So I closed my laptop and turned off my phone for fear of what kind of comments I was gonna get. Well that didn’t last long ‘cause I recognized my own thoughts and assumptions were more deadly than the cancer itself. To my surprise, when I got online again, there were loving and supportive messages from so many people… from people who I know love me, from people who I’ve never met in person but have been FB friends for a while, from people who I haven’t spoken to in years and from people who I don’t even remember ever speaking to. What was also interesting was the lack of response from people who I thought would have responded or sent their well wishes. This observation doesn’t mean anything and I really don’t care because I didn’t post to get likes and I most definitely didn’t post to gain sympathy…. (Maybe this is a subject for a later post). It’s all interesting observations to me. A friend once told me, “you really figure out who your friends are and who really care about you when you’re at your lowest or when you get diagnosed with something like cancer.” (Ok, this is definitely gonna be another post.)
Your Life Can (and will) Change In a Moment’s Notice
I’ve learned to go with the flow and recognize that change happens all the time, with or without my consent, permission or intent but wow, the last three months really taught me a lesson on change. One day I’m going about my business and then the next day, my whole life is going to change, I was going to have a baby and then a short moment later, I wasn’t going to have a baby. After the whole baby ordeal passed, the doctor said it wasn’t cancerous and then a short moment later, the doctor said it’s now cancerous. Two weeks ago, I taught a room full of yogis and spent the whole day teaching a group of teacher trainees and the next day I was to start chemotherapy. Today, I sit at home resting, reflecting, and staying away from crowds and people. This is what it means to go with the flow and I continue to learn… learning how to sway with the current, to take the sharp turns as gracefully as possible, to constantly create life as it literally unfolds each day, each moment.
Dr. Jeckle and Hyde
The night before my first treatment, all I could think about was how my life was going to change the next day at exactly 3pm and how this all just happened right before my eyes. It all felt surreal. I imagined the worse possible scenario because chemo doesn’t necessarily paint the picture of paradise awaiting. I was a bit surprised when I learned the whole procedure was gonna be about 30 minutes, most of that time was waiting for the drugs to be freshly mixed. I imagined the whole thing like a scene from Jeckle and Hyde, of being injected with a long sharp needle filled with a yellowish poison, whose cold thick liquid would sting with a slight burning sensation as it seeped into my body and my tongue would taste it’s venom as my eyes started to glaze over with dryness and my skin would become cold and clamy and then they would just say “all done! You can go home now and slowly wither away in a low grade misery, that is if you don’t curl yourself up next to the toilet first.” This was my nightmare that would soon become my reality.
What Really Happened: The First Treatment
Three o’clock rolled around and saying that I was nervous and scared was an understatement, however, I was ready to face whatever change and turn my life was gonna make. Most importantly, I was in acceptance finally, that this is occurring and this is what my life looks like now. It didn’t matter what I did yesterday because today is chemotherapy day. It was a bit surprising that the injection center was such a large area with so many chairs. Is there that many patients? Kinda scary to think about these chairs being filled. No private rooms? Only curtains and a nurse’s station in the middle. The atmosphere felt like it was a normal, everyday, walk in the park procedure. Nothing special, nothing serious. I’ll admit I was a bit disappointed and also very happy to not see the dramatic, drab, and scary scene I had imagined (or seen on TV).
The nurse said it might sting. I asked how big was the needle, she paused and said “well it’s an intramuscular injection…” I couldn’t look and didn’t want to cause I knew it needed to be long enough in order to properly stab me in the upper hip/buttock area to deliver the cocktail. Just like I had dreamed about, it smelled cold and chemically. It felt like the worse possible flu shot ever. The liquid felt cold as it flowed in yet also had a warm stinging sensation as it slowly seeped in. For a moment, I could taste the residue and all my senses were heightened. I wanted to cry but held back my tears for the sake of my hubby, who I’m certain was in pain in his own way for having to watch me go through all this. And then the nurse said, “All done! Are you ok? Since it’s your first time, we’ll keep you here for 20 minutes, just in case you have a reaction.” I slid back into the chair, practiced my deep breathing and became acutely aware of every little sensation, twinge, and twitch. I felt my body gradually flush with warmth as my heart changed pace and the sudden feeling of dehydration in my mouth coupled with the sticky, slightly burning sensation in my eyes come and go. I imagined that yellow cocktail flowing thru every single blood vessel, reaching every cell inside of me and instead of being consumed by fear of the drug poisoning every cell in it’s path (cause that’s what chemo does), I visualized the yellow amoeba like fluid attaching itself to the tumors in my uterus and swallowing them up and then self destructing. It’s quite the movie to be watching.
Speaking of Change
The first week of chemo was definitely a change of pace, attitude, perspective, purpose and anticipation. After 20 minutes passed and I showed no signs of abnormal reaction, I was released to go home. Life slowed down really really slow. I had nothing to do but wait. It was the longest week of my life. Friday seemed so far away, for that was the day I would get my blood drawn and tested for how I responded to the chemo. Every hour that passed presented a new sensation, the side effects slowly kicking in. I guess it works that way to help you pass time. An hour into the first injection, I had to change my attitude about taking the anti-nausea meds they gave me to help combat that side effect. I don’t know about you but I am typically not quick to take meds and definitely am not a fan of taking additional meds to counter act the effects of the previous meds. However, when the nausea started to creep in faster than I could say that last sentence, I reached for the bottle, rolled out my yoga mat, and propped myself up with some blocks and bolsters and allowed the fatigue to lull me into my safe place, savasana.
That night was like any other night of tossing and turning because of dull aches and pains but it was different than any of the other sleepless nights. It was a strange feeling of being in a body that I didn’t recognize. I could feel it physically changing. Every little tingling, tickling, creepy, crawly, hot and cold sensation that passed through my body felt like my limbs were slowly disintegrating away. It felt like I was going to crumble like a sand structure, grain by grain like the Sandman from Marvel Comics and my body was going to disappear by morning. I remember finally getting up to wash my face and didn’t recognize the face in the mirror. So many thoughts ran thru my head in that second of staring at myself in the dim bathroom light. “Who is this person? What have I become? How did this happen? What’s gonna become of me? Am I gonna die?” Clearly chemo also f*cks with your brain and in my case unleashes my imagination. Lucky for me, there was a few bottles of my essential oils left out near the sink that triggered me to go find a particular blend to help me calm down and get grounded in my body again (more on this later).
The morning after was no different except nausea had really made her appearance. I pop the second pill. I can’t stand noises or smells. I just want to hide underneath a rock but I hear my phone ding, the sound of text messages coming in. I didn’t want to check and I didn’t want to hear any more noises coming from my phone. I open my phone to turn it off and couldn’t help but check the messages. To my surprise, it was exactly what I needed. I didn’t need a rock to crawl under, I needed to know that I still mattered. Yes, even I struggle with this. The need to be loved is strong and every now and then the self destructing thoughts of worthiness, deserving-ness, and good-enough-ness creeps in. The “work” of self-growth never ends but I digress. Perhaps that’s another long post waiting to be written.
Loving and caring messages from people asking, “how are you doing, is there anything you need, how can I help you,” all pulled me back into presence, back into my body, albeit a tired and fragile body. At that moment, my purpose changed and my perspective shifted. I rolled out my mat and did my yoga practice, as much as I was able to do and my stomach could handle. It was enough to give me a surge of energy and set the stage for what I did next… and that was to read and scour the internet for anything and everything related to my condition, the chemo treatment I was getting, to finding other women who have or are going thru the same thing to finding other alternatives to supplement my treatment.
Words Matter (As mentioned in the first post.)
I was determined to not sit around and let chemo brain (as they call it) entertain me while I waited for Friday to come. I spent every waking and free moment I had on my laptop, googling, reading, making sure I didn’t leave any site unvisited. A notable moment was when I thought to myself that words matter. After reading so many articles, blogs, medical journals and hearing from other women going thru the same thing (I actually found an online support group) as well as experiences shared from other cancer survivors, I came to really dislike the words “fight” as in “keep fighting” and “battle” as often coupled with “lost the battle.” These words are very sharp to my ears. When I hear them, I feel like I’m at war. It’s draining and requires a lot of energy, something that is often scarce for someone being treated with chemo. I reflect back to the first time I heard my doctor say, “it’s cancerous now,” and can’t recall a moment that I felt like I was going to fight this thing. It was more like “how am I going to deal with all this” up until I completely accepted it. In the attitude of acceptance, I felt more able to help my body heal, to find ways to support my body and trust it is strong enough to do what it’s suppose to do. I felt like my body is my ally, not my enemy that I am fighting against and I want to support it so it can begin it’s healing process. I also understand that it may need some external help especially when it has been wounded.
I ask, if God forbid my body is not successful in healing itself, please don’t say that I lost my fight to cancer or I lost my battle with cancer. I now know that every cancer patient doesn’t just give up and lose, they are indeed “fighting” to the best of their ability to their very last breath. Every waking moment is spent on prayer, is spent on treatment, is spent on doctor visit to doctor visit, is spent on educating and trying all sorts of things to save one’s life. To say that they lost is a slap in their face, a minimizing of their efforts and paints a picture of their weakness and weak is far from what they are. So what do you say? I don’t really know what the best way is to describe, label or tell others how they departed this world. Perhaps it’s better to say “we lost him/her to cancer or cancer took him/her.” I don’t know if that’s any better and I hope I’ve given you something to consider before your tongue is quick to formulate words that are often scripted and most likely lacking compassion and empathy.
Anticipation and Expectation Often Leads To Disappointment
It’s friday morning. I’ve never been so excited to get my blood drawn. I was happy to hear that my standing weekly lab order is labeled “STAT” which satisfies my need to know now. Within the hour, I get the first set of results, the regular stuff like red/white blood cell counts, hemoglobin, etc. The uninteresting stuff IMO. What I’m anxious to see is the beta HcG levels, the hormone levels that indicate whether the tumor is still growing or has stopped or slowed down and the metabolic panels that show whether my liver and kidneys have been effected by the chemo. Another hour has passed and I still haven’t received the results of the two remaining tests. A few more hours passed and nothing. I gave up because the constant checking of email was driving me crazy and I was scheduled to see the nurse practitioner anyway that afternoon.
As I get called back, I find myself once again getting annoyed by other people’s words. I’m gonna blame my altered state of mind from the drugs. The nurse who called me back to take my vitals said, “Hi, how are you?” in that automatic, scripted way that we often greet people with and often don’t expect a response other than “good, and you?” She didn’t even take a moment to look at me and proceeded with getting her gadgets out. Normally I’m aware of this and it doesn’t bother me at all and I often play along but this time I was annoyed. Perhaps it’s the chemo brain side effect. The awkward moment didn’t bother me one bit when I responded with, “Have you ever had chemo? I got my first treatment this week so I’m not doing very well actually and this is not my favorite place to be and I’m nervous about what the nurse is going to tell me. I don’t mean to be an ass, but do you actually think patients who walk into this oncology office is gonna be feeling great?” She apologized and proceeded to make more small talk that I especially don’t care for.
Finally the NP comes in. She’s starting the small talk and the ass in me is really being expressive today and interrupted her, “Nice to meet you, thank you for seeing me today, did you get my test results because I only received one of them.” She started to tell me what I already knew, that my blood counts were normal, etc and then the look of disappointment flashed across her face. Some how I knew what she was going to tell me. “Your beta HcG levels didn’t decrease. They’ve increased another 30K to 97,000 levels” followed by my oh “so favorite” pair of words, at least. “At least your metabolic panels are normal and your kidneys and liver are still in good condition. Not the news I wanted to hear, in addition what I heard was “I’m sorry the poison we injected you with didn’t kill the tumor but the good news is it didn’t hurt your kidneys or your liver either.” Fear, anger, and thoughts of regrets flash through my body as the tone of her voice next made me feel like I made the wrong decision to cancel the surgery and opt-in for chemo instead. She continues with the same old questions I’ve been asked before, “are you done having kids?” and implying that we could all be done with this if you get a hysterectomy and be done with it. She’s trying to understand why I would’t want a hysterectomy especially if I’m done having kids. I had to bite my tongue before my asshole expressed herself again in a much more rude and unkind way. I opted to play their game in order to get out of that office as quick as a I can, to go home, cry, try to make sense of what’s happening and to listen to what my body was telling me.
That night, I learned once again that having any sort of expectation is guaranteed to produce disappointment of all sorts. I had placed too much hope in the chemo to actually do what it’s expected to do. You couldn’t have blamed me because midweek I felt very good. I had lots of energy, an appetite, no nausea or aches and pains. It felt like the chemo was working. Remember that anything can change in a moment’s notice? That’s what it was like. The night before I felt like I was run over by a semi-truck and the next day I felt like a brand new body. None of this made any sense to me. As much as I am in-tune to all the physical changes happening to my body, the results and numbers didn’t make any sense. The nurse also didn’t have any explanation except for that it’s my first treatment and it’s possible that it won’t work because my HcG levels were already too high to begin with. I’m so glad I didn’t let her instill that fear in me because when I came home, I reached out to the support group and asked others what the results of their first treatment was like and learned that many of the women said it’s not uncommon for hormone levels to slightly spike after the first treatment. When the tumor cells die, HcG hormones can get “dumped” into the bloodstream. A wave of hope and relief passes through and I get busy googling and searching for information.
Cultivating an Open Mind and an Open Heart
The NP and Doctor agree that we should give chemo another week before we discuss in more detail the next options. I agreed. Armed with more information and knowledge, I go into my 2nd injection with an “it is what it is” attitude and go back to my “flow with it” mentality. This time no more images of Dr. Jeckle or placing all my faith in this yellow cocktail. I go in, get injected in the butt and go home. They didn’t keep me for 20 minutes the second time and I went home per business as usual. An hour after receiving the poison, I feel my heart race, tingles tickling through my body and flashbacks of blacking out appear to signal that I might actually faint, so I rush to the couch and take deep slow breaths. With my fingers still trembling, the fatigue settles in. I give in and fell asleep for what felt like days until nausea woke me up. I gave in and took one more anti-nausea pill.
I don’t remember what triggered the actions I took the next day but I decided that I needed to take more responsibility for my care and give my body the additional support it needed and I needed to do it now and do it aggressively if I am to get the results I want. I opened my mind to all possible treatments and I gathered all my tools: my essential oils, specific crystals and gemstones, and the omega juicer (to begin with). I was going to flood my body with a ton of good stuff, like little helper elves. I aggressively went on a juice fast midweek, took certain supplements that I’ve read about, learned about trophoblastic cells (the cells that forms the tumor) and ways to trigger the body to stop producing them, did extra long meditation and yoga practice as well as pranayama (because tumor cells can’t thrive in an oxygen rich body), drank teas of sorts, turned my kitchen into an essential oil laboratory, mixing and blending essential oils to help alleviate the aches and pains and help me sleep more cause rest helps the body repair and heal. I’ll definitely be sharing my arsenal of tools and the kind of helper elves I’ve been using in another post.
Finally, March 17th, I didn’t have to wear green because I’m certain I would’ve bleed green after juicing a plethora of wheatgrass, watercress, kale and a few other things I’ll share more on later because this post needs to come to an end. It’s friday morning, time to go get my blood draw. The scenario is all too familiar. Within an hour I get the blood count results with remarkable results. My white blood cells and hemoglobin has increased, something I didn’t expect but the metabolic panels and HcG results were not available. I try my best to keep an open mind and open heart and resist the urge to rewind last week’s episode. I distract myself and pop in a DVD and watch a movie. It’s mid afternoon and I get a text message from some of my favorite people. You see, my BUFF (best unicorn friend forever) took a last minute trip to Kauai to be with said favorite people to have some fun and do some work with essential oils. I know! How dare she leave me behind! Well they made time for me amidst their busy “work” schedule and did a live call with me. It was the highlight of my day that finally took my mind off of being at the helm of a blood test. I felt so lucky to have such a caring support network.
After a lovely conversation with my BUFFS, I sent the nurse a message because the day was coming to a close and I didn’t want to spend the weekend not knowing. When 6pm rolled around and no answer back from the nurse, I had to accept the fact that I was not going to know until Monday. An hour later, before I prepared for dinner, I decided to check my messages one more time and guess what was there?… two messages!
I stared at my inbox like a deer in headlights. You’d think I’d click on it right away but I literally froze. I had to collect myself, remind myself to breathe and calm my thumping heart. I click on it and my eyes automatically knew where on my screen to look for the HcG number. Upon seeing the numbers in the 74,000 level, I sobbed, trembling and overwhelmed with relief, hope and happiness knowing that I didn’t inflict suffering for no reason when I forced myself to drink wheatgrass all day long.
A weight lifted of my shoulders and I feel lucky once again. It’s day by day. Moving forward with an open mind and an open heart. Flowing with the current and looking forward to Monday for my 3rd injection. You can wish me luck, but I think luck is always on my side.
Thank you from the bottom of my heart for your calls, messages, prayers and thoughtfulness. You are most definitely lovely little leprechauns 🙂