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.

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.

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.

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.

"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!

Coping and Surviving

I was back at my doctor's clinic yesterday for a routine check up and to submit my mammogram and sonogram results. Although 4 more nodules were detected on my left breast, my doctor agreed with the radiologist that they were not a cause for alarm and that I should not let them worry me.

Earlier while I was still waiting for Dra. Cruz to come back from a series of surgeries, I was lucky to meet another cancer survivor and unlike the last encounter I had Helen was the one who showed interest to hear my cancer experience. She showed real concern knowing I'm only 30 and just had a baby. But at the same time, I felt a sudden jolt of inspiration seeing how positive she is. She did not look like she just recently went through 6 sessions of chemotherapy. She just so full of life that I realized I am going to win this battle.

It's been two months since my surgery and I am starting to feel like things are back to normal. The hubby and I are now able to put all the worries behind and genuinely enjoy our moments with Maia.Sometimes, on really good days, I tend to forget the challenges that we went through at the beginning of the year. We're starting to laugh a lot more often - laughter that has more depth.

I can only hope that this situation at home remains like that forever. But of course I will have to be realistic. Thoughts of recurrence and mets will probably linger. One thing I've proven from all these is that with family support, it is easier to face a cancer diagnosis. With that I am very, very grateful.