Conundrum for the broken

 I was excited to be able to make it to take a newly approved drug, Cyramza. I did not expect it to cause me so much suffering. In fact, I feel a bit broken from this new treatment (Cyramza and Docetaxol).

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm426720.htm

I'm somewhat stable with broken bones, and dealing with the side effects of the chemo treatment with discolored and cracking nails; my feet, face, eyelids, and belly are all swollen, causing me to gain 10 pounds. Along with that, I have mouth sores, alopecia, and extreme fatigue. The side effects are destroying my quality of life. Individually they are manageable, but together I have to ask - is Docetaxol worth this? I don't know what the future holds, but I hope there will be a more manageable and effective treatments soon.

My Grandma

Knowing that death is inevitable does not make facing death easier. Death felt so real when my grandma passed away this week. She was a good-natured, open minded, healthy, and active woman who loved to tease her grandkids. A few months back, she acknowledged her longevity; bravely declaring that at 97 years old, she was at peace with letting go when the time comes. That time came a few days ago. And while she was ready to go, it is still hard to accept the void in my life even knowing that she had an impressive and fulfilling life.  Despite the emptiness, her passing inspires me to reach that peaceful state when my time comes.
 

What's next?

My most recent scan showed that the tumors were growing after 2 months of Crizobtinib. Every time a chemo treatment stops having an effect on cancer, I panic and think about the people I love that I have to leave or the things I want to do before I go. My doctor suggested that even though the drug did not shrink the tumors, it might possibly slow the growth rate. He recommended that I stay on Crizobtinib until another possible option is available. I'm unclear as to how long this process will be. There's no waiting in cancer. Everything gets worse with waiting. So I have an appointment with my previous doctor to explore possible clinical trials at his hospital. Hopefully, there will be a useful trial for me soon. The wait is tough. The longer I wait for the next treatment, the more pain I feel in my body.

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Update - I was unable to get into any clinical trials, because of my seizures. A bit of a downer, but thankfully there was one chemotherapy that my previous doctor thought of. I started on Cyramza and Docetaxel. Hopefully it will be a good combination. 

Survival Rate

My friend told me that her father-in-law had lung cancer. She wanted to know what his chances of survival are. I felt that knowing the rate is depressing and might not even apply to him. Everyone is different and special in their own way. No one wants to be just a number. When I was first diagnosed during Thanksgiving of 2011, I googled my chances of surviving - 8 months was pretty slim and 5 years was even slimmer. I don't know if I'm going to be that 1%, but it doesn't matter. I can't spend my life crying about my death. What matters is the present, because that's the only place I can be in. So I have to enjoy ever moment of it and make it count. I hope he does too.

 

Genome Test

I became allergic to the Carboplatin treatment recently. My throat closed up causing me to wheeze heavily. Thankfully, the nurses ran to retrieve an oxygen tank for me.  Time to search for another treatment, since I can no longer tolerate this one. Plus, a scan showed that I also now have a new met spot on my rib.

A week or two earlier, I had taken a genome test, which tests for 340 types of mutations that are also present in other types of cancer, not just lung cancer. I had another mutation, NTRK 3, which does not have a targeted drug in the market yet. The next best solution is Crizobtinib that targets another mutation, ALK, but has been known to be somewhat effective with the NTRK mutation.

This little pill packs a punch. It has been so hard to keep food and water in with the nausea and GI track problems. I was eventually prescribed a nausea drug (Zyprexa), which for the most part, is keeping things under control. It was a tough beginning. At least my hair is slowly growing back.







 

Beautiful Stranger

Earlier this month, at my physical therapy waiting area, I met a young woman who recently got diagnosed with leukemia. Interestingly, she was a radiation oncologist resident at Mount Sinai hospital. We connected via issues we face as young adults with cancer. She was sweet, but seem bitter and jaded from her experiences. Understandably so, I felt a bit unnerved as she was sharing her story. Long story short, she was determine unfit by the hospital's Wellness Board to treat patients. Since she can no longer work as a resident, she is being evicted from the hospital's housing apartment for residents. To top it off, the day she got diagnosed, her boyfriend left her. After we departed, I thought a lot about her. I'm not sure if I could help her emotionally without causing myself stress, which was one of the reasons, I did not ask for her contact information. I hope she's doing better than I left her.

She reminds me of  how extraordinarily lucky I am to have an incredible network of supportive family and friends in my life. The holidays, specifically Thanksgiving, mark the anniversary of my life After Cancer. I made it to my third year. Three years is a long time for someone with stage IV. I'm hoping for more anniversaries to celebrate with the people I love so dearly. Thank you all so much for your love, support, patience and reading my blog. :)
 

I got dumped!

Getting dumped is a pretty awful feeling that I thought generally existed only in the dating world. That's not true as I have found out. My doctor walked in and jokingly said, "So did anyone tell you that I'm dumping you today?" I was caught off guard and hoped that he was actually joking. But alas, he's moving on to bigger and better things in the lung cancer medical world to become a Director in another institution to teach, research, and work on clinical trials. I thought, No! This can't be! I was already missing the bluntness and directness of his approach that grew on me after 3 years, and the comfort and familiarity of seeing him at the hospital. After we hugged, I tried not to cry as we closed off with the status of my PET scan (stable! yah!) and what my next options would be once this treatment stops working. I most likely won't see him again, but I have his contact information. He did encourage us to call if we have any questions and even stated that if there is a clinical trial at his new facility that might be of interest, we can contact him. Maybe it's not the end of the relationship but a change in our relationship.

Flowers for Algernon

I had recently finished the book "Flowers for Algernon" which seems to be a classic school read. It was about a 32 year old man with a below average IQ who had an experiment performed on him to slowly transform him into a highly intellectual being. Unfortunately, the experiment appeared to only work temporarily and he started to lose his vast knowledge.

I had an almost similar experience. One afternoon, I suddenly felt numbness on my right hand and forearm, then the bottom half of my face, then my left hand. I can't remember this ever happening before. I rushed to urgent care, then started feeling dizzy and vomited. The neurologist asked simple questions that I was conscious of, but somehow wasn't able to answer them. All I could think of was Flowers for Algernon.

I was diagnosed with a seizure that most likely resulted from the tumor that was radiated earlier this year. I'm on an anti-seizure drug (Keppra) now indefinitely, but I'm so glad that to have regained my focus.

 

First Wife

As I am aware that my life span is shorter than that of an average person, I think about how the lives of my family and close friends will play out after I'm gone. For example, I wonder how my parents' retirement will be like, how many kids my brother will have, and, of course, if my husband will remarry. I came across this article that really hit home.

http://www.slate.com/articles/double_x/doublex/2011/05/my_husbands_other_wife.html

I just don't want my husband to forget me, but I want him to be happy even if it means remarrying. As the first wife, I hope the second will be someone like the author. For now, I'll just keep on creating new memories with him.

What if...

My back has been hurting from a compressed fracture (caused by a metastasis) even after radiation treatment. I've been debating whether to get a procedure called kyphoplasty, which involves injecting bone cement into the vertebrae for stabilization and possible pain management. Surgery is never the optimal choice for me, even if it's minimally invasive. It's times like these that sometimes makes me wonder - What if I didn't have cancer. In my mind, I would have a brighter, happier, more active, pain-free life with unlimited potential. Alas, if only that could become reality. I have to admit that it's somewhat depressing to think about what I can't have. Perhaps it's better to think - What if I didn't even catch this cancer. Maybe everyday after I have been diagnosed is a bonus. And I hope the bonuses keep coming.

Break-ups are Never Easy

I was an active member of NYSC for over 10 years. I love that I can go anytime and anywhere as its presence is ubiquitous. When I go in stressed or frustrated, I always come out happy and ready to take on the world. It was my sanctuary. During those years, I made an effort to not let anything interrupted my 4x/week gym time.

Since I have been diagnosed, my attendance at NYSC plummeted, but I didn't cancel my membership. I kept hoping that I would return and get back to my old self. So every now and then, I walked a block down to relive the past. It's a different gym though. It has changed at some point in my absence into a new gym with new machines, new staff, and different members. It didn't feel like home, especially when the aches and pains limit me from utilizing some of the equipment there.

Last year, I knew that NYSC has more than I would need in terms of location, equipment, people, etc. But it took until today, for me to have the heart to finally walk into the club and sign my cancellation form. I walked out crying. I just broke up with my constant, my haven, my past.

I know the end of one era begins another. It's still difficult for me, but I'll eventually come to terms with giving up my membership. These days I reserve enough energy to go to my small building gym 3-4x/week. I customize my workouts to maintain and aim to achieve the same goals I had in the past. Regardless of where, at least I still get to have my sanctuary.

A Good (?) Reason for Insomnia

After receiving radiation for my brain, the tumor generally would swell up. To counter that, I am currently on a steroid intake schedule for another week. As usual my body wants to rest, but my brain does not.

In an effort to tire my brain, I have been trying to read more. I came across The Fault in Our Stars (by John Green) about a teenage girl afflicted by cancer and living her life. I just finished the book and I can't stop thinking about how simple yet so insightful it was. I'm not a book critic, but if anything deserves to be #1 New York Times Bestseller, it's this. It was so profound and poignant in every way about relationships, love, meaning of life, and more. So good, I might have to re-read it.

A movie based on the book comes out in June. I'm very excited about it!
http://www.imdb.com/title/tt2582846/

New Years News

I had a PET scan on New Years Eve. The following day I received a call from my oncologist. It's almost always a bad sign when a doctor calls, especially on a holiday. The cancer had progressed in my lungs, spine and lymph nodes. This is the fourth time a treatment has ceased to be effective for me, but the news still hits me hard. Maybe even more so the fourth time around as there feels like less treatment options available. Admittedly, this hopeless feeling is due to my ignorance of available treatments, but I can't shake the fear that my days are imminently numbered.

For now, as I wait to get a brain and spine MRI before determining the next chemo and radiation treatments, I wonder whether I have gotten the most out of life.

                   
UPDATE:
Currently, I'm getting my spine radiated. Other than some soreness in my upper back, I'm dealing with the radiation fairly well.

Next Tues, after I finish the spine radiation therapy, I'll have Stereotactic Radiosurgery (SRS) for the tumor in my brain. The term surgery is a misnomer since SRS is really radiation beams directed at the tumor. It sounds simple, but learning about the procedure made me cringe. The day will start at 7am (early!). I'll be fitted with a (heavy?) metal halo looking object around my head with pins penetrating the skin to keep the halo in place. Sounds painful. I jokingly asked the nurse if I could put topical Lidocaine all over my forehead to help me deal with the pain better. She said probably not since the placement of the halo is unknown at the moment. With the halo on, I'll get CT and MRI brain scans used by the radiation team to map out the course of action. The wait for the final analysis and treatment will require some patience.

The radiation beams will target various points of the brain, which will most likely cause hair loss in those areas. After my first experience with hair loss, I have thinner hair and much more white hair. Even so, I don't want to loss what I have waited so long for. But the tumor is close to the ocular nerves, so further growth could affect my vision. Choosing between vision and hair is obvious, but hair loss is still hard to deal with. I can't do anything other than to suck it up and hope for better days ahead.

Healthy Young Non-Smokers

"Why do healthy non-smokers get lung cancer?"

http://www.theatlantic.com/health/archive/2013/12/why-do-healthy-non-smokers-get-lung-cancer/281718/

The article mentions a three year study in Boston to find out what is different with younger lung cancer patients. I definitely would like to join if a study opens up near me. 

Thanksgiving

Thanksgiving is such a wonderful holiday with great company and a plethora of food. It's particularly poignant for me as I was diagnosed around this time 2 years ago. It's not quite an anniversary, but I'm so thankful for making it to another Thanksgiving.

Some weeks ago, I was apprehensive that this annual milestone was out of reach. At the time, I had episodes of numbing sensation in my hand and forearm. With each episode, I couldn't shake the feeling that this could be a nervous system issue; possibly mets in my brain again, or mets in my spine growing, or possibly getting seizures. I rushed to urgent care at midnight hoping to resolve this immediately. After hours of waiting, neurological tests, brain scans, and an uncomfortable spinal tap, nothing significant was found. I was eventually diagnosed with having sensory seizures from an unknown mass in my brain. Something to monitor, but nothing to worry about for the time being. Thankfully.

Happy Thanksgiving!

Reluctant soldier

I hate cancer. I hate how my life has been compromised by it. Everyday I have to deal with a slew of health problems. It's tiring. I'm tired of gritting my teeth and clenching my fists as pain randomly surges though my body. I'm tired of going into a fetal position whenever with my stomach churns angrily.  I'm tired of battling nausea.

 

In fact, my latest battle with nausea resulted in a sprained foot. As I violently vomited into the toilet while kneeling on the balls of my foot, I tore some foot ligament. So I've been moving around in crutches for a few weeks. My hands hurt; my armpits numbing; and my good foot is becoming a bad foot. My limited mobility is like a reflection of the limits of my life with cancer - what I cannot do; what I cannot have.
 

I'm tired of fighting. I want a break. If only I could rest on the sidelines and watch myself prevail without dealing out the punches and suffering the bruises. Unfortunately, it's an endless war where rest stops are nonexistent and there is no choice but to march on.

Should I be worried?

Recently, I have been experiencing much more discomfort, such as more nausea/vomiting, and muscle and bone pains. I've also felt tightness in my chest, which caused me to have shortness of breath. I panicked thinking it could be a heart attack and called the hospital. The doctor did not think this was heart related and instructed me to continue monitoring these symptoms.

These symptoms have also led me to get scans for a possible explanation. Perhaps the current treatment is not working, and I may need a new treatment. Hopefully this is not the case, as the current treatment is manageable. It would be nicer to think that these aches and pains were the result of the drugs beating cancer to death. But for now, I just have to wait for the scan results and hope for the best.

Update
Scans show that almost everything appears to be stable. Thank goodness! I definitely would like to know why I have these issues, but I'm happy knowing that everything is stable and I will stay the course for the current treatment.

My Dilemma

Tarceva didn't work for me. The only thing Tarceva did was give me reptile skin cover with pimples and an inflamed red nose. I started another treatment (alimta and avastin). I still have nausea, but it has been much kinder to me. As part of my treatment regimen, I take steroids the day before, the day of, and the day after treatment to keep my nausea mostly under control. Steroids also give me more energy to do things that would normally take a bit more effort. Unfortunately, all this energy keeps me up at night despite taking sleep aids.

So my dilemma is whether to take the steroids to keep the nausea at bay, or to forgo the steroids and deal with nausea everyday for over a week, but get good sleep. I flip back and forth for each treatment. I decided to take it this week, because I didn't want to deal with the nausea from the last treatment. Today, I added swimming to my gym routine in an effort to expend as much energy as possible. I'm tired! But, hopefully, I will get a good night's sleep.

In my memory...

I met a friend early last year who had the same diagnosis. We shared stories about our lives and our struggles with cancer. She was really upbeat and fun to be around, especially because she kept me sane and gave me comfort during tough times. When she stopped responding to my emails, I became worried. I reached out to her friend only to receive news of her passing. My heart sank. It was a desolate moment. I miss her so much. I miss her smile. I miss talking to her. I miss the support we gave each other. I think of her often.

A treatment going well initially can easily take a bad turn. We try different chemo treatments hoping that *this* treatment will be the one. I choke up thinking that my friend did not have to opportunity to find a treatment that would have kept the cancer at bay sooner.

In a way, it is a dismal reminder of how crucial lung cancer research is.

On a hopeful note, a "conspiracy to kill cancer":
http://www.time.com/time/magazine/article/0,9171,2139170,00.html

Love v. Cancer

It's been over a year since I've been diagnosed.  It would be nice if I was in remission or cancer free by now. I'm not, but I keep going. I attribute my strength to the love of my family and friends. I believe I am an incredibly lucky person in an unlucky situation. A friend in Japan sent me a picture of him wearing my personalized bracelet from the Lungevity walk. He told me "You never have to walk alone" and I never have. 

A poem that a good friend dedicated to me reminds me of that. The poem reads:

Sometimes nothing makes sense
It feels like the world can
Fall apart like building blocks
You lose your footing
You feel alone
But then you look down
And realize
Each block you stand on
Is someone who loves you
And that makes you stand up
Even taller

Cancer has not taken away my love.