Five Years After

Today at my routine check up, my doctor told me that one patient of hers was also diagnosed with Malignant Phyllodes Tumor. I once wished to meet somebody like me. But 5 years after, I don't think I still wish for the same. Now, I just wish that more people will give more value to life. Because it really is a gift. A gift that most would take for granted. I now dream of that day when most people would choose to live more meaningful lives. 

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My facebook status today: Oh, tonight as I wait to be lulled to sleep. I remember that time 5 years ago when I was told "no more solids after 12mn". The next day, I let myself be wheeled into the OR and went out of it almost 3 hours after with one less boob and an almost unbearable pain in my chest BUT with great pride knowing that I have surpassed one major fear that is surgery. And yes a week after that I was told the tumor was malignant but today I celebrate not only for myself but to all those brave men, women, children and babies who fight to live beyond a cancer diagnosis every single day. I have nothing but pure respect for all of you. You inspire me everyday. Every single day.

On Choosing Life.

Overdue

June has passed and I have yet to schedule all my routine check ups. I used to obsess about them. Like my world revolved around it. But I don't know. Lately, I keep making excuses and end up forgetting to schedule. My yearly CT Scan is the most urgent but yes, the most dreaded of all the routine tests that I had to undergo.

Lately, I've not been feeling well. Maybe it's the stress or the lack of exercise or taking my diet for granted. I think it's all of the above. But when fatigue takes hold of my body, I can never stop thinking of mets and recurrences. I'm not scared anymore. But I worry. For my loved ones most especially.

So this week, (I can only say partly for everyone's peace of mind because the waiting time for the results is an altogether different story) I MADE time to schedule the CT Scan finally. My creatinine results came back normal and within range so there's no turning back now. This Saturday I face my dreaded procedure once again. 

Could you please say a little prayer for me then? That everything goes well with the procedure? That I don't puke my guts out and they get a good look at everything swiftly so we do everything in just one go (and no need to redo). My procedure is at 9am this coming Saturday. I hope my body cooperates with the dye this time. And I hope my results come back as normal as possible.

no turning back. everything's all set.

Cure Today Magazine: Treatment Advances in Sarcoma

Bookmarking this article from CureToday magazine. Hopefully, more and more advances in Sarcoma treatments will be available soon.

Here's a link to the article. And posting the full text below (mainly for me to re-read in the future):


Group Therapy: Treatment Advances in Sarcoma
BY HEATHER L. VAN EPPS, PHD
PUBLISHED MARCH 12, 2013

Soft tissue sarcoma has benefited from research in other cancers.

In 1991, 34-year-old Gina Lamons received a diagnosis of synovial sarcoma and was told that the prognosis for survival was five years. By 1994, her disease had metastasized to her chest and lungs. Now 56, Lamons has long outlived her initial prognosis and the statistical odds due to multiple surgeries, numerous rounds of chemotherapy and radiation, and participation in a clinical trial.

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After decades of dealing with metastatic disease, Lamons’ options have become increasingly limited. She completed seven cycles of a 14-day continuous infusion of ifosfamide in July 2012 and was then placed on Votrient (pazopanib) that August. Initially approved for kidney cancer, Votrient blocks the growth of blood vessels to the tumor, as well as certain proteins that promote cancer cell development, and is the only new drug approved for treating sarcoma in years.

In her first follow-up scan in November 2012, none of Lamons’ existing tumors had grown and no new ones had appeared. The scan report also noted there was a decrease in one of the metastatic

Gina Lamons has been dealing with sarcoma for more than two decades. Photo by Rob Snavely.

The Road to Diagnosis

Sarcomas are a diverse group of cancers that arise in the body’s supportive tissues, including bone, cartilage, fat, muscle and blood vessels. With roughly 14,000 new cases diagnosed each year, sarcomas are rare, accounting for approximately 1 percent of all cancers in adults. These tumors can be broadly divided into bone and soft tissue varieties, with soft tissue sarcomas (STS) further divided into more than 50 subtypes that get their names from the tissue of origin. Liposarcomas, for example, have malignant fat cells, and leiomyosarcomas have cancerous smooth muscle cells.

Although most cases have no known cause, the risk of developing certain sarcomas is slightly higher in people who have received radiation for other forms of cancer. Certain STS subtypes are also more prevalent in people with genetic disorders caused by mutations in genes that affect cell growth and death. For example, people with Li-Fraumeni syndrome, a rare disorder caused by mutations in the TP53 gene, have a greater incidence of STS along with several other malignancies. In addition, non-inheritable (acquired) mutations in the c-kit gene have been associated with a rare type of STS called gastrointestinal stromal tumor (GIST). These mutations provide clues to the causes of these rare cancers that can lead to better therapies in the future. As the most common early symptom of STS is a painless mass, patients are often unconcerned and delay seeking treatment. As a result, these tumors can grow very large or even metastasize by the time they’re diagnosed. Lamons’ initial symptom—pain in her right thigh—was unusual for STS. An initial X-ray revealed nothing. Physical therapy and pain relief efforts didn’t help. Eventually a lump appeared, and a magnetic resonance imaging (MRI) scan revealed a 6-centimeter mass.

In some cases, a close look at the tumor’s genetics can help clinch the diagnosis. Certain types of STS, including synovial sarcoma and rhabdomyosarcoma, often carry telltale abnormalities called translocations, genetic mix-ups that occur when pieces of one chromosome break off and fuse to another. As a result, rogue proteins can be formed that fuel uncontrolled cell growth.

Growth pathways that are activated as a result of translocations and mutations have revealed promising drug targets, many of which have been successfully disrupted in other types of cancer. However, tests to detect these genetic traits are not routinely performed, primarily because the cost is often not covered by insurance but also because genetic factors account for only a small percentage of cancers. Lamons’ tumor was tested in 2005 and did not demonstrate a translocation.

Evolution of Therapy

Initially, Lamons’ tumor was localized, and her surgeon was confident that he had removed the entire tumor with clean margins, sparing her from chemotherapy. “My diagnosis kind of went over my head,” she recalls. “I didn’t understand the gravity of it at the time. I just knew I didn’t want chemo because during that time I always heard about people dying from the treatment.”

Like Lamons, most patients with localized disease are treated with surgery, often in combination with radiation, an approach that results in an overall five-year survival rate of 50 to 60 percent. Some institutions also add adjuvant (post-surgery) chemotherapy to eliminate cancer cells that may have escaped into the bloodstream. But it’s debatable whether the benefits of chemotherapy in this setting outweigh the risks, as clinical trials have shown little, if any, effect.

My diagnosis kind of went over my head. I didn't understand the gravity of it at the time.

—Gina Lamons

Patients with metastatic STS who can’t be treated with surgery receive radiation or chemotherapy, and the go-to drugs are doxorubicin and ifosfamide. Other agents may prove more effective for certain STS subtypes though they are not curative for metastatic disease. New approaches and drugs are clearly needed, as these patients have a median overall survival of only about eight to 12 months, although this varies widely.

Lamons didn’t avoid chemotherapy for long. She developed a cough in 1994, and an X-ray showed a large mass in her mediastinum along with nodules in both lungs. After surgery to remove the lung masses, she received six cycles of the MAID (mesna, doxorubicin [Adriamycin], ifosfamide, dacarbazine) chemotherapy regimen, which she says was the most challenging of her treatments to date. Three years later, more lung masses appeared and were surgically removed followed by ifosfamide, which Lamons tolerated better, apart from extreme fatigue and nausea. “There were days that I couldn’t even lift my head off the pillow,” she recalls.

Efforts are under way to test new chemotherapy drugs as well as new versions and different combinations of existing ones. One example is palifosfamide, a new and presumably less toxic derivative of ifosfamide, which improved progression-free survival by more than three months in patients with metastatic STS when used as first-line and second-line therapy in combination with doxorubicin. But Kristy Weber, an oncologist who directs the Johns Hopkins Sarcoma Center in Baltimore, describes these new regimens as “tweaks” rather than big changes.

A promising new chemotherapy agent, TH-302, appears beneficial in early studies of patients with advanced STS. It hones in on the low-oxygen region at the center of tumors. “Most chemotherapy drugs can only get into the periphery of the tumor because that’s where the blood vessels [and thus oxygen] are,” explains Richard Riedel, an oncologist who is associate director of clinical research for the Duke Sarcoma Research Program at Duke Cancer Institute in Durham, N.C., where he leads a TH-302 trial.

[Find clinical trials in soft-tissue sarcoma]

Researchers believe another drug, Halaven (eribulin mesylate), already approved for breast cancer, jams up the cell’s division machinery in patients with certain STS subtypes. Both TH-302 and Halaven are currently being tested in large, international phase 3 trials; Riedel estimates that preliminary results for TH-302 will be available by mid-2014.

The DNA-damaging agent trabectedin is approved in many European countries for patients with advanced STS. The drug is still being tested in the U.S., but phase 2 trials showed some benefit, particularly in those with liposarcomas and leiomyosarcomas. Trabectedin is also being tested as a front-line treatment in comparison to doxorubicin in all patients with translocation-related, advanced STS and to dacarbazine in those with liposarcomas and leiomyosarcomas.

Surgical advances are not going to cure more people. At the end of the day, if we don't have better drugs, we're not going to make progress.

—Kristy Weber

Letting the Tumor Lead the Way

For many years, the repertoire of drugs used to treat sarcoma was notably lacking targeted agents, drugs that block the growth of cancer cells by targeting specific molecules that promote cell growth and survival. But things began to change in 2002, when the targeted drug Gleevec (imatinib), was approved for patients who have GIST and a c-kit gene mutation.

Gleevec is primarily used to treat chronic myeloid leukemia, where it works by inhibiting an enzyme activated by the mutant BCR-ABL gene. In GIST, Gleevec inhibits the similar c-kit enzyme that is activated in more than 80 percent of GIST tumors. “For the first time ever, we had an outstanding response in STS,” says Katherine Thornton, an oncologist at Johns Hopkins, “and this tipped off a whole new interest in studying sarcoma and targeted therapy.”

Four years later, the Food and Drug Administration (FDA) approved a related drug, Sutent (sunitinib), for patients with GIST who failed to respond to Gleevec. In general, however, Gleevec and Sutent work poorly against other subtypes of STS. Lamons was treated with Gleevec in 2002 as a maintenance strategy, and her lung masses remained small and amenable to surgery for several years. But such “off-label” use often requires lengthy negotiations with insurance companies to cover the cost of these drugs, which haven’t yet passed the rigorous efficacy and safety tests required for an FDA approval in that indication.



After her cancer progressed in 2011, Gina Lamons switched to Votrient, a recently approved drug that inhibits blood vessel growth to the tumor. Photo by Rob Snavely.

By 2011, Lamons’ cancer had progressed further, and she had multiple nodules in her neck, requiring still more radiation and chemotherapy. Years of treatment had taken a toll on her body, and she needed a new approach. Fortunately, in April 2012, Votrient (pazopanib) was approved for treating her type of advanced STS, and her doctor suggested she try it. Votrient blocks the growth of blood vessels to the tumor by inhibiting the activation of the vascular endothelial growth factor (VEGF) receptor. Although she tolerated it well, her dose was reduced after she developed high blood pressure, a common side effect of the drug, and experienced frequent low white blood cell counts.

Other types of targeted agents being tested against advanced STS and bone sarcomas include Rapamune (sirolimus), Afinitor (everolimus) and Torisel (temsirolimus), all of which target a growth-promoting protein called mTOR. Avastin (bevacizumab), another VEGF receptor inhibitor, seems to work well in patients with angiosarcoma.

Some of the most promising drugs for STS block the insulin-like growth factor 1 (IGF1) receptor, which is activated in rhabdomyosarcomas and leiomyosarcomas. Unfortunately, many drug companies pulled back on development of anti-IGF1 agents (such as figitumumab) when larger clinical trials showed that they weren’t as effective in more prevalent cancers, such as breast and lung. “Even if they sold the drug to every kid with rhabdomyosarcoma on the planet, it wouldn’t budge their balance sheet,” says Paul Meyers, a pediatric oncologist specializing in sarcoma at Memorial Sloan-Kettering Cancer Center in New York. Indeed, the rarity of STS, as well as other rare or “orphan” cancers, means that it’s also a lower priority for funding agencies. “Even if we found a target and an agent that attacks that target, we fear that we would never attract the kind of resources needed to take that drug from pre-clinical testing all the way to an indication from the FDA,” Meyers says, noting the extraordinary expense of this process. The FDA is actively addressing this issue by funding clinical research on drugs used to treat orphan diseases and providing drug companies with financial incentives for the development of these agents.

Despite the considerable challenges, Meyers sees targeted drugs as the future of sarcoma therapy. “I think each one of these diseases is going to have a different point of attack,” he says, which will be revealed by the unique biology of each tumor.

Having battled recurrent disease for more than two decades, Lamons has witnessed the evolution of sarcoma therapy first-hand. She recalls thinking, “If only I can survive a little longer, perhaps there will be advancements in treatment where I can just take a pill. And, eventually, there was!” she says of Votrient. Lamons stays focused on the positive, hoping that Votrient will continue to work and that further advances in sarcoma treatment will stay one step ahead of her disease.

Mammogram Results Year 4 and Some Realizations

I received a Birads 1 Category yesterday. Of the 4 years that we've been monitoring my condition, this was a first time for me. I once received a Birads 2 but it often has been a Birads 3 category. And I thought that merits an entry here. BECAUSE even if they are never an indication that I am truly cured or that I am cancer-free, they give me more hope. Hope is something bankable for me. Something I can live with day in and out. 

Yesterday, while talking to my surgeon (who sometimes also ends up as my psychiatrist), I asked this long-time nagging question: 

"has there been anyone else after me?"

"yes, there were a couple. but of malignant nature? none after you"

I am that rare. Sometimes that realization is just overwhelming to bear. But I have to live with it. I am sure though that there has to be somebody else before me (if not after me). Someday, I hope to meet that somebody and exchange stories of our own amazing journeys. Hopefully, not anytime soon. As I would rather meet that somebody 10 or even 20 years from now. Because that would call for a major celebration, I'm sure (what with two rare people finally crossing paths?). For now, I continue celebrating every waking day. Because life is a gift we all should cherish.

Four

Faye Pachoco-Paras

15 January at 06:02 via Mobile · 

• Due to the flurry of things and responsibiliies.I had to attend to I totally forgot that yesterday was my 4th cancerversary. I have been scared for 4 years already but the lessons that life changing event has taught me is more than enough compensation for losing a mere physical part. I keep on hoping and praying tho that no mother will ever go thru that same experience. But nevertheless mothers are born tough. They are made to withstand every trial and tribulations thrown their way. You just have to throw in a good support system in the mix and you will be fine. :) 

  
  

  For documentation's sake. Just copy pasting it here. 

Routines

Today is one of those days. I come home with my arms looking like that of a junkie's. I have a nasty migraine to boot brought about by food deprivation having fasted for 12 hours (wonderful news from the lab though, I was advised I can now take a few sips of water while fasting since my veins tend to constrict even more when I'm dehydrated) I usually end up with a month's worth of fat and cholesterol because my hunger always points me towards that place reeking with burnt grease but yet smelled awfully tempting. I flush a month's worth of work out and healthy dieting again because my brain is just too clouded by hunger I ended up letting my nose decide for me. My brain is still alive though and it's telling me to move out and choose healthy. But my defenses are weak. I give in. I will worry about the consequence later. For now, I immerse myself in all this greasy glory.

Every 6 months or so, I have my blood chemistry checked (usually it's for Lipid profiling and SGPT count. some days, the doc would request for the complete set). In late 2010, I went to a Cardiologist because I have been feeling some on and off chest pain and that really bothered me. Turns out what I categorized to be pain was just a product of my imagination since my ECG showed nothing to be worried about. Well, it wasn't really that pain that you might be thinking. I didn't feel like I had a hollowblock sitting in my chest or anything. It was more like a pinch that lasted for 10 secs. Doc  tells me it could be heartburn but just to appease me, he ordered for a stress test and blood work. The stress test was normal. I even reached level 4 which according to the doctor who monitored my test wasn't really necessary and yet I passed it. I can even pass for an athlete they say, save for of course my hideous flabs. The blood work though didn't bring good news. I was High and Low in the wrong areas. So dear doc put me on medication for 1 month. That didn't work but it did lower the cholesterol a bit. I graduated to 2 months, then 3 months. My OB-Gyne however was not comfortable with me taking these meds. So we all agreed on a compromise. I faithfully watch my fat and sugar intake (read: AVOID AS MUCH AS POSSIBLE) and we'll stop the medicines. Well, I did not only promised to be religiously conscious of my diet but to exercise as well. Doc took my word and it has been almost a year since I stopped medicating.

I will know in 3 days if all my efforts have paid off. But so far, my lipid has not spiked since. It's not yet normal as normal can be BUT it is better. And I'm hoping for normal soon.

Apart from the blood tests today was also my routine sonomammogram. I saw a couple of new nodules earlier but I got a shoulder tap after the procedure somehow assuring me that they are most likely nothing to be worried about. BUT then again, you never know till you see the results. So I wait. Hopefully for good news.

For now...we do the waiting game. That I tell you is always the worst part of this whole routine.

Scanxiety, That Is What It's Called

source

Last March, I was told that CT Scans are going to be an annual thing for me. Initially (c. 2009), I thought it was just going to be something that I would be doing for 3 years (or 5 years tops probably) while we are monitoring for recurrences. But my doctor explained that due to the rarity of Phyllodes, scans are the only way we can ever catch recurrences and mets at the onset. By that, she went to confirm that it is going to be a lifetime thing. I don't really mind. I'm just glad (and very thankful) my current job gives me the opportunity to somehow afford this very costly procedure by providing me with a good health insurance coverage. 

Yes, I don't really mind doing this every year because I know how IMPORTANT this is for me. But the thing is -- this whole procedure scares the sh*t out of me. ALWAYS. Apart from [forever] hating that weird smell the minute I step into the hospital's radiology section (well, fact is i could never even get used to the disinfected smells of hospital what more in this part of it), what I hate most is getting that large dose of dye contrast into my small (yes, i'm still small! lol) body. You see, I am allergic to contrast agents and yet I usually get injected with 120-150cc's of this dreaded thing. The first 3 scans I had sent me puking my guts out. It left me overly traumatic. I only do this once a year but every time I sign the paperwork and get myself prepared for the procedure I'd almost always feel like I'm on the verge of a heart attack. And it doesn't help either that I have very small veins and it almost always takes the IV therapists at least 30mins to get the heplock insertions done because they had to re-do at least 3x and I'd usually end up with hematomas in my arms. And when the machine injects that dye unto my small veins, I can't tell you how painful it is. But I can tell you though that they leave my arms sore for days. I could see the veins change their colors from bluish to purplish and when they disappear I can only assume that's the time they're finally healed.

Oral Contrast Agent (it used to be barium, i forgot to ask if it's still the same since the texture has changed. This one was not that difficult to drink since it also tasted like mineral water)

Thank God for hospital staff that were trained well on bedside manners. They always sort of give me a certain degree of comfort. In the midst of my internal hysteria, the simple reassuring squeeze of my hand or shoulder from the nurses and the resident doctors somehow gives me a brief feeling of peace and turmoil resolution. It doesn't last long. But the breather helps. Tremendously. And so today, I'd like to offer this post [as a big, big thanks] to the doctors and nurses who heard my panic. Although, the last 2 scans that I had prior to today's turned out way better than the first 3, today's was sort of a milestone-r as well in the sense that it might just help me handle (emotionally) my future scans better. On my fourth scan (today was the 6th), one of the attending doctors opted to change the brand of the dye contrast (I'm now using the brand Iopamiro) to use on me and the puking stopped after that. I was still nauseous but it didn't send me throwing out whatever's left inside my stomach after fasting for 6 hours at least. I'm glad that doctor listened to me. One of the residents told me there's really no difference with regards to the composition of both brands they used on me except for the manufacturer but I'm just glad that helped addressed my issue. Now I need not worry about anaphylactic shocks (have I ever mentioned I eat paranoia for breakfast?). Today, the doctors added more padding to my assurance by giving me a dose of antihistamine and steriods. It's just an additional precaution they say. But you see my brain is just wired that way. The mere mention of the word precaution somehow pacifies it. So when I got inside the scan room (coming from an hour of restful sleep brought about by the wonderful Benadryl - no wonder they never sell it over the counter hehehe), I wasn't as clammy as before. And what used to be an hour long procedure was now shortened to half. I came out grinning from ear to ear. For a moment, I felt like I was a real winner. 

A few minutes before Benadryl sent me to lala-land.

I know that these concerns of mine are very trivial compared to those who went through cancer treatments. This morning was also an eye opener for me having interacted with 3 women who just finished their chemo and radiation treatments. I was actually sadder than happy today having met this women and seeing how cowardly I've behaved. I deeply apologize for that. But I just had to let this out. 

Next year, I will have to go through this again. The scanxiety might probably revisit me once again knowing that they always come in different forms (today was about vomits and anaphylactic shocks, next time it could be dreading the results who knows). But I hope I can deal with it even better knowing that today turned out great. The waiting for the results is altogether a different story but surviving today alone just makes me grateful for a lot of things. So again, thank you. THANK YOU. thank you. To all of you who told me I can do it. 

It's Been Three Years

Yes! Today is my cancervesary. And it's been three years since that (un)fateful day, I was wheeled into the OR and got out without my left boob.

I wanted to write something longer. Just to commemorate the day. But I guess I ran out of things to say. My big plan is really just to move on. And keep praying for others who need more of it. From where I'm sitting, that's the best support that I can think of right now. Lame, lame. The first year of my diagnosis, I had a grand plan. I really wanted to promote PT awareness in the Philippines. But I was sucked into the world of motherhood, drowned in it and never got out (not that i'm complaining).

This post had been sitting in my draft folder a few days before my cancerversary. But I never got past one sentence. So now, I'm just posting what I wrote in Facebook to remember that day by.

Three years ago, I was already being prepped for surgery the next day. It will probably remain to be one of the scariest days of my life but I will keep holding on to that memory because despite the how scared I was of that day, it was also the day I realized how much I value life. 

Life is a gift. Sometimes it just takes a different perspective to see that. But it is a gift that we all should cherish and experience to its fullest. 

I just have to say this though - phuck phyllodes

If you are a PT patient and is lost and looking for somebody to talk to, feel free to join our Facebook group (group name: Phyllodes Tumors, CystoSarcoma Phyllodes, whatever it's called...) You may not find your answers but there sure is somebody in there who will listen to you and comfort you the best way they can. My PT sister Anna Wallace has a wonderful blog as well. Please go visit if you would want to read on her PT experience. Click here to visit her page.

Here is another informative article that discusses the facts and myths on Phylloides Tumors. Click here to read the article.

Holiday Health Scare Syndrome Strikes Again

I haven't been feeling my best lately. I don't know if its the lack of exercise or my body telling me something is wrong again.

Last night, the weather was kind enough to let me run. It was drizzling lightly but it was safe enough to run. So I did a 2-miler just to sweat out the toxins that have been building up for the last 2 weeks. I felt really good. I ate a very light dinner, spend an hour watching Castle with the hubby, spent about 30mins doing my holiday project then turned in at few mins past 12. I've been sleeping a lot later than my usual 9-10ish bedtime lately. I wanted to believe that's the culprit to this unusual fatigue that I've been feeling the past few days.

I know the coming week is going to be really tough for me again. I'm not supposed to see anymore doctors this December (besides the neurologist to bring back my EEG results) but I guess it really isn't time for me to take a rest on the doctor run just yet. I'm giving it another year. And then I'm going to focus on getting pregnant again.

Yes, I'm positive this isn't going to be something major (I will conquer this mentally damn it!) And that 2012 is going to be a lot better than the past 3 years. Health-wise most especially. By God's grace of course.

The Serenity Prayer

The past few days saw me being dragged into that dark place I so hate to be in. I pray things get better soon. I pray to get my old happy self back. Soon please. For now, this prayer is on repeat.

got the full text from here
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The Serenity Prayer

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace; Taking, as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life and supremely happy with Him Forever in the next. Amen.

--Reinhold Niebuhr

"I'm Gonna Love You Through It" - Martina McBride

A friend just shared this video and I cried buckets while watching it. I suddenly felt this overwhelming feeling of gratefulness.

Mitch, Gail, Tessa, my Phyllodes sisters over at Facebook, everyone I met in this journey who bravely shared their stories to inspire me - I am VERY LUCKY TO HAVE MET YOU. Though I'd rather really that I met you in a different circumstance (preferably one donned with a party atmosphere maybe or anywhere with good ambiance) but still not everyone gets to meet people who make you realize how lucky you are to be alive and that LIFE is something you cherish and not waste.

To friends who would constantly check on how I was doing, I am immensely thankful to have you guys around. We may have been physically separated by our present locations but you were always just there. And I may not always be vocal of how I appreciate all your concerns, but yes I DO. They keep me going.

To my ever supportive family I AM VERY GRATEFUL THAT I HAVE YOU. I do not have words to describe how thankful I am that you were always there for me. That I can count on you each time I needed emotional, financial and whatever kind of support you can imagine. I love you.

Just last night, I was putting my daughter to sleep and asked her to pray for Mommy to get better soon. I thought she didn't hear me because she was still asking for some play time during bedtime so I resigned the thought. But guess what, after covering me with a blanket (and making me believe we are still playing hide and seek), I heard her pray! She went: "Jesus, pagalingin mo Mommy ko! Thank you, Love ka ni Maia!" (Jesus please heal my Mommy, thank you Maia loves you!) I was trying so hard to keep myself from tearing up (hence, I'd scare the little lady). I am a the luckiest mom, wife, sister, daughter, friend there is.

Again, I have nothing but gratefulness for this overwhelming, unending support around me. And I know I will never get through the day without them.

Living Beyond My PT Diagnosis

More than two years after my diagnosis, I found myself re-reading my old posts in this blog. I realized I never shared in detail what happened to me after my diagnosis. Maybe it was me trying to move on after all the drama so I stayed away from retelling my Phyllodes battle further. I probably just couldn't admit it then - and was just using motherhood as an excuse to not blog anymore about it - but I was in fact actually trying to bury the memory in the hopes that I can finally have peace of mind (as if that would really do the trick). So what's changing all that now?

Last Saturday, I received this email from a lady named Shaoie, also a Filipina, saying she was recently diagnosed with Benign Phyllodes Tumor. She apparently came across this blog when she was researching on Phyllodes. Why do I have to mention her being a Filipina? Well, this is the first time for me to meet somebody who was diagnosed with the same type of tumor as mine. I have been in touch with a support group for sometime now but I have never come across somebody from this region. It was a mix of emotions for me. But then I had to snap out of it and help her because I think that's the reason why she emailed me. She needs some support of sorts. She was having trouble understanding her condition and from her email it seemed like she was her doctor's first phyllodes patient. She was in this cloud of uncertainty and I can definitely relate. Our difference probably is how our respective doctors handled our case. So let me summarize what took place the last two years and share what I know of this tumor.

From the onset, my doctor - Dra Felina Cruz - already suspected that what I had was Phyllodes having seen and handled a few cases in the past. She did not conclude immediately but she prepared me emotionally for it. When the frozen section results came in and confirmed that it was indeed Phyllodes, I was ready. And since my tumor was really large (it ate up my entire left breast) we went for the conservative path and decided for mastectomy instead of a lumpectomy. That somehow saved me from ever worrying if I got good margins or not because when you are diagnosed with Phyllodes getting wide, clean margins is important. It does not guarantee that the cancer will not recur but somehow it widens your chances of actually not getting a recurrence.

So I had the mastectomy and surprisingly, recovery wasn't as hard as I'd imagined it to be. Apart from me being saddened that I wasn't lactating anymore (I still aimed to breastfeed  my 3 month old daughter then), it was easy for me to accept that the left side of my chest is totally flattened. It grossed us out at first seeing my heart throbbing from my chest wall but that eventually turned out to be entertaining (finding light out of a tragedy really). Life was almost normal at home for 2 weeks after my surgery.

The next stage was dealing with the pathology results. It came out malignant. That's when things got really depressing. I think with me somehow losing hope, my husband felt hopeless too. We struggled a bit. But I had to move on and deal with the succeeding tests that I had to take in order to make sure the cancer has not spread. I was immediately scheduled for a mammogram and breast ultrasound. My doctor also ordered for a CT Scan with IV contrast of my abdomen to make sure my lungs and liver are still okay. Thankfully everything came back as normal as it could go (I had 4 benign nodules on my right breast which had to be monitored every 6 months and I have a fatty liver).

Then lastly came the management plan for my cancer. My surgeon did not want me to undergo anymore radical treatments - radiation or chemo - because there aren't enough studies proving these two can actually prevent the cancer from coming back. What we agreed then was for me to be closely monitored for the next 2-3 years. Check ups every 3 months then breast ultrasound every 6 months. Annually, I needed to have a mammogram and CT Scan of my abdomen. I've been religious with all these. Even if I go through an annual bout of Scanxiety (I will talk about that on a separate post), I gather all the courage I can pull and complete these tests. At least once a year, I also make an appointment with my oncologist and a neurosurgeon to make sure all areas are covered (thank God for health cards).

Everyday we all deal with uncertainties. Mine is this battle with Phyllodes. Sarcoma is an aggressive form of cancer and Phyllodes is that type. Each time I feel an ache, the thought would nag me for days. My life doesn't stop there though. And you know when you meet people who have gone through far worst than you and yet are fighting strong, God seemed to be talking back and telling you "Hey Kid! You're still alive. So learn to live!" So I try to do that. I get obsessive with my diet, sleep and exercise on some days but I'd rather do that than let myself be engulfed with morbid thoughts. We are all given choices on how to live our lives. I'm done living mine in fear. I choose to enjoy life with my family and loved ones from this day forward.

About to be discharged from the hospital after my mastectomy.
Bye bye Phyllodes!

Avon's RACE to 125,000 Kisses

The Avon RACE to 125000 Kisses Poster

October is breast cancer awareness month. Here in the Philippines, that usually kicks off with an Avon sponsored event called Kiss Goodbye to Breast Cancer. This year is going to be my third time to participate. I first joined in 2009. That was the year I said goodbye to my left breast and embraced the reality that is cancer. It was just the hubby and me then but we vowed to come back with our family of 3 the following year. And we did! The little girl barely knew what was going on then but I was happy she was there with me to join many other inspiring women to walk to spread more awareness about breast cancer.

L to R: Tibs and Me pausing for pictures; the 2009 Commerative Wall behind  me

Happy to be here.

This year, I decided to level up. I have been running for more than 2 years now and I only see it fit that I not only walk but run as well in support of this cause. I decided to register and run my favorite distance that is10k and will join the walk after that with Tibs and Maia and many other wonderful, brave women (and men).

Our family of 3 in 2010

If you are interested to join this running event, here are the details:

Event: Race to 125,000 Kisses Run
Date: October 2, 2011
Venue: SM Mall of Asia Open Grounds
Starting Time: Wave Start is 5:00AM for the 10k run event
Race Fee: P500 - 5k and P650 - 10k

However if you only want to join the walk, you just need to buy the 2011 KGBC T-shirt that comes with a Kiss Bag Tag for only P220. Every shirt you buy entitles a P20 donation to the PGH Breast Care Center and selected provincial hospitals.

For more information, you may check out the Avon Race to 125,000 page: http://www.avonkgbcphilippines.com/

Hope to be running or walking with you in October!

33

I just feel obligated to post something to remember this day by. Or just until I'm able to get my thoughts together and get over this blogging drought. 

Birthdays make me emotional. Well, for so long birthdays were just something I'd like to celebrate so I'd have an excuse to shop or treat myself to something extraordinary. But that has long past. Now birthdays are a big reminder to me of how blessed I am.

Yes. I worry like crazy each time the thought of the Big C hits me. But those are now rare. For the last 2 and a half years, I just try to live every waking moment like there's no tomorrow. And somehow, that makes me feel better. That somehow comforts me when I go to sleep at night.

Yes today I am 33. And I just want to mark that literally by sharing with you one of my favorite songs:


"Thirty-Three"

Speak to me in a language I can hear
Humour me before I have to go
Deep in thought I forgive everyone
As the cluttered streets greet me once again
I know I can't be late, supper's waiting on the table
Tomorrow's just an excuse away
So I pull my collar up and face the cold, on my own
The earth laughs beneath my heavy feet
At the blasphemy in my old jangly walk
Steeple guide me to my heart and home
The sun is out and up and down again
I know I'll make it, love can last forever
Graceful swans of never topple to the earth
And you can make it last, forever you
You can make it last, forever you
And for a moment I lose myself
Wrapped up in the pleasures of the world
I've journeyed here and there and back again
But in the same old haunts I still find my friends
Mysteries not ready to reveal
Sympathies I'm ready to return
I'll make the effort, love can last forever
Graceful swans of never topple to the earth
Tomorrow's just an excuse
And you can make it last, forever you
You can make it last, forever you 

The Big C and the Picky Eater

I did not expect her to be asking about the missing boobies this early.

But this morning while she was waiting for me to finish dressing up for work, she popped the question: "Mommy, san na (pointing to my left chest)?" (Mommy, where did it go?)

When we were in Antique, I was amazed at how my sister trained my nephew, Gogol, to eat his veggies and fruits. It turns out, she always tells him he'll get cancer if he doesn't eat healthy food. So Gogol does what he is told. He's a very good boy at the dining table. :))

It was a light bulb moment for me. When I heard the question I grabbed the opportunity to inject just enough scare factor on her so she can start eating right. Guess what, it worked! Right after our conversation she moved out of the room, pointed at the fruits on the table and asked for a serving. Talk of taking drastic measures. But a mom's gotta do what she has to do. Hehe.

Here's how the conversation went (sorry I had to share them in Tagalog):

Maia: Mommy, san na?

Me: Inalis ni Doc 'nak. Kasi nagkaroon si Mommy ng cancer kailangan tanggalin ni Doc para mawala na at gumaling si Mommy.

Maia: Ayaw ko ke doc, Mommy. Ayaw ko.

Me: Naku wag ka matakot ke Doc 'nak. Pinagaling nga nya si Mommy eh. Pero para ikaw wag magka-cancer dapat kumakain ka ng gulay at fruits. Si Mommy nung bata ayaw sa mga yun kaya ayan nagka-cancer.

Maia: (labas sa room) Mommy o...mangoes. Kain ako!

You should have seen the silly smile on my face. I just hope this conversation sticks to her memory long enough till her taste buds get use to them veggies and fruits.

Homecoming treats

I come from a family who is quite liberal when it comes to religion. So holy week is never really holy in our household. But what we really look forward to during these times are our mini-reunions. Since my sister and I both had our own families and have been living away from home for quite sometime now, holy week vacations have become a much bigger treat for my parents and siblings. Of course, more than the idea of having the big sisters around it is the kids who really make these vacations extra special.

We are not big on home parties but we always try to find something special to do. Last year we checked in to a newly opened resort in Guimaras and toured the kids around the island to sea starfishes and sea anemones and various corals. They had a blast! This year though we did not have the luxury of time to go somewhere else other than Antique so we settled for a nice swim at a nearby beach. Kids still loved it!

I'm sharing some photos from our recent trip home. I can't wait for next year. I hope we'll have more time to bond by then!

(Yay! I'm learning to navigate picasa and am really starting to love it! It's a very useful tool for people like me who will never learn any photoediting software) Collage sidebar (counterclockwise from the top: my dad teaching Maia how to ride the tire swing while my nephew Gogol makes his crazy pose, kids enjoying an al fresco brekky with my centenarian grandma - 101 and counting!, Maia shopping for her own clay made cooking set, Huwadhuwad and Ibus from the Friday market, Maia and me by the sunset, Beautiful sunset at one of the nearby beaches, Maia's flower bouquet (yes she did the bouquet all by herself), Welcome to Antique sign!

I am Blessed

If I can get away with it, I will choose to rid of all the drama.

But I don't think life has offered me that as an option. It was always either about learning to dodge them or making it through them.

I've always made it through. But that does not always go to show that I chose to fight to make it thru. It always just seem to happen that I get the extra energy boost at that point when I feel like letting go and giving up. I always end up prouder of myself though. And probably that is why somehow someone up there took upon himself to send me the extra boost to make it thru. He wants me to feel triumphant after every drama. He wants me to savor that moment. He wants me to count my blessings.

So everyday, I end up counting and counting. Yes, I am blessed after all. Always am.

Hello There!

I've taken a hiatus far too long from writing. And I miss it so much.

I hope to be back on my feet from this day on.

Early this week I had a light bulb moment. And I'm hoping to make that light bulb moment translate into something more realistic soon.

But for now, please bear with bulleted updates of my boring life. That I will try to do at least weekly if that would help me get back into writing mode.

Health-wise I've just gotten over my beginning of the year C-blues and I'm hoping the last few bits of them are finally gone. It seems like I always begin the year with a cancer scare. I hope next year it will be different. For now, I end this short welcome post for me with a very grateful tone. Being around to welcome the new year is always a good sign for me. Knowing that I still have a full year to make things right and make good, wonderful memories with people I love makes me feel very, very grateful. :)

One day more

I woke up feeling a little woozy. I would like to think that this was because I was overworked the other day and went home around 9pm already. For the past few months now, my eyes have been sending me signals of how abusive I have been of them. I've always taken for granted my eyes. And many times, I've thought of stopping on some eye center to have them checked but I always tend to forget the last minute. Anyways, my point is there are days when everything just seem blurry and the nausea just intensifies. I just close my eyes and it goes away.

My doctor told me another reason why I've been feeling nauseous is because I've been spending nights and nights and nights thinking too much of things that are still too early to worry on at this point. But I can't help it. Can you blame me?

Last week, I wanted to shut myself out from the world. This week, I've improved a little. I started talking to the hubby already. The burden lightened a bit. But the worry didn't go away.

Tomorrow, Thursday I will take that test again. And I can almost picture what I will see. I am ready. But again, if it turns out to be the thing that I worry the most these days I would like to be happy. I really do. I hope I will be.

Dear God, I already lifted everything up to you. I know you will take care of us. You always do.