Life after Tamoxifen

It has been a long time since I last updated my blog.  I just opened my blog site again and saw when I last posted and what my last post was. I have always complained of headaches and bone pains with Tamoxifen but we were so afraid to risk stopping it.  I had a two week break in February 2012. It was not long enough to see any difference on how I feel.

In February 2013, I stopped taking Tamoxifen again as advised by my oncologist to see whether it was what was causing my headaches. Soon after, I think about three weeks into it, I had my blood tests and it showed increased tumor markers CA-125 and CEA. I immediately had PET scans and CT scans to confirm the tests.  It showed metastases of cancer in the mediastinal lymph nodes which surrounds or are under the heart and the chest.

It was March 2013, I was re-staged to Stage IV, two years after my first diagnosis.  Because of my BRCA (BReast CAncer) mutated gene or BRCA-2, and previous chemotherapy, I had to be on a different chemo cocktail. This time, it has to be on a stronger dose and more frequency.

My oncologist wanted to be sure that the chemotherapy will work with the metastases and the BRCA-2.  At that time, he was heading a research team on a clinical drug trial for metastatic breast cancer patients with BRCA mutated genes.  After undergoing screening, I was accepted into the program. It was a blind study for the drug Veliparib which is aimed at treating "difficult-to-treat-tumor-types"

I had a cocktail of Carboplatin and Paclitaxel in combination with the clinical drug trial. (The research team believes I was given the Veliparib based on the blood tests). I started my treatment in April 2013, every 3 weeks, indefinitely for as long as the treatment is working.

It was a very difficult treatment compared to my first chemotherapy in 2011.  The side effects started to occur as soon as the second cycle.  Vomiting, nausea, loss of hair, loss of appetite, constipation, overall sickness and headaches.

On the 4th cycle, I started to get hospitalized after each treatment. I started to have nerve pains on the back, numbness and tingling sensations on both hands and feet, also known as peripheral neuropathy.

After the 6th cycle, my oncologist decided that my body cannot handle the toxicity of the treatment anymore.  They performed another series of scans and it showed that 5 of the 6 lymph nodes cannot be seen anymore and one is very small that could be considered shrunk.

In November 2013, I stopped my treatments.

In December 2013, my tumor markers have gone back to normal and no abnormal or cancerous lymph nodes were showing in my scans.

I went back to taking Tamoxifen soon after my chemotherapy.

But the side effects from the clinical drug trial and chemotherapy lingered since.  Since November 2013, I started to have severe migraines, double vision, confusion, loss for words and memory loss.

In January 2014, I started to have a seizure and loss of consciousness. Followed by another one in February 2014 during a hospitalization.  I have been since under the care of an oncologist-neurologist since then. I was prescribed Ritalin to help with the confusion, inability to stay awake during the day (as a result of my anti-depressants which I take at night), and Topomax for the severe migraines.

I also stopped Tamoxifen, again.  This time for a longer period. I went to get a second opinion, from my previous oncologist and he told me to stop Tamoxifen altogether. I haven't gone back to taking it since March 2014. I have had 3 blood tumor marker tests since then and they have all been normal.

Oncologist #2  prescribed me Anastrazole, which is for post-menopausal women. When I went to CVS, they won't fill it, because it is for post-menopausal women.  The insurance won't cover it either because I am under the menopausal age. The doctor has to change it but there was no other alternative but Tamoxifen.  I gave up.

I've been okay since then with my tumor markers, I have not had any scans though.  I lost my Blue Shield insurance after the Obama-care and have not been able to afford the same kind of health care without choosing between the food we will eat or getting a hospital check up.  That will be another blog post.

I have so many things to share about my journey since then.  But life after Tamoxifen, it didn't make a difference in my experience.  Without it in 2013 for two weeks, my cancer immediately came back.  Without it in 2014 for 10 months, I have been fine.  As Oncologist #2 told me, he could give me placebo and say it was Tamoxifen and it wouldn't make a difference.

I hope to hear from other women who were/are taking Tamoxifen. 

Thankful for family and friends

This year's thanksgiving is extra special because after a long time since I had cancer, in 2011, we were able to finally travel and see our families and friends in Boston.  

I just want to share these pictures especially to those who are clamoring for it. :)

By the way, it feels good to post a blog again.  Its been a long time.  I have a lot to tell in the next few days/weeks because I just had my CT scan again.

Hope everyone is having a great holiday season!

Click here to view these pictures larger

Help us in this fight against breast cancer. If you can , please help in raising funds for Krissy's Breast Cancer treatment:

Almost Half of Young Breast Cancer Patients Stop Tamoxifen Early

I was searching for effects of stopping tamoxifen early. Because right now I feel a splitting headache that radiates down my neck, feeling nauseated, feverish and feeling like I'm coming down with a flu.

Its nothing compared to the bone pains, fatigue and sometimes waking up and not being able to get out of bed because of bone and joint pains. Tamoxifen side effects can hit BC survivors worse who are pre-menopausal.

It's not a self-fulfilling prophecy because my oncologist and I didn't know if it was from tamoxifen until I was allowed to temporarily stop for two weeks. Two weeks, that's all the break I could get. Of course it's up to me if I will take my medication again and live the next five years with severe bone pains, exploding hot flashes that feel like being on fire from head to toe, confusion and difficulty concentrating, lack of libido, fatigue on top of fatigue from running after an active toddler, menopausal symptoms and not being allowed to have a child until hormone treatment is over.

I don't want to be part of the statistics that stopped their medication to alleviate the life-affecting and debilitating side effects. USA today and the American society of Clinical Oncologists reported that Half of Breast Cancer patients stop taking hormone drug But I also don't want to suffer for five years. A survivor's body has been a battlefield, from battery of tests to diagnose, to surgeries, to chemotherapy, to radiation and now the side effects of drug treatment. But diagnostic tests, surgeries, chemotherapy and radiation are all time-limited. You see the light of each tunnel and there are options given to ease the side effects. Five years to live with pains seems too long.

I wish there was a way to alleviate the severe side effects among young women to help us adhere to the treatment long enough to finish it. The side effects are not just a list on the drug label. Its real and I experience it.

Help us in this fight against breast cancer. If you can , please help in raising funds for Krissy's Breast Cancer treatment:

Tamoxifen and Bone Pains

On November 8, 2011, I was declared NED or No Evidence of Disease by my oncologist.  Commonly, we know it as in remission.  After my blood test results showing no increase in my tumor markers CEA (Carcinoembryonic Antigen), CA125  (screening for ovarian cancer) and CA 27.29 , antigen found in breast cancer patients.

My oncologist told me though that to be declared in remission, I have to be NED for 5 years and to be cancer-free, I have to be NED for 10 years.

Three months have passed again and my blood test recently on January 27 showed that my CA 125 and CA27.29 are within normal limits still but my CEA is elevated at 5.1  (Normal limit is 3.0)  My PET scan, brain MRI, lung and liver scans show that there is no metastasis or spreading of cancer.

However I have been experiencing severe bone pains, tiredness and coughing for more than 1 month.  My oncologist is still trying to investigate where it is coming from.  I asked if it could be from tamoxifen, the hormone therapy drug that I started taking in November to shield me from cancer recurrence.

We are trying to find out the cause. I will be off tamoxifen for two weeks and will come back to see Dr. Audeh of Cedar Sinai to report the difference in how I feel.

I have not been taking Tamoxifen for one week now and I have not been feeling the bone pains and the coughing has gone away. There is still a little tiredness but better compared to when I was taking the medication.

Could it be tamoxifen that makes me feel tired, the bone pains and difficulty in breathing?  These are listed among the drug's side effects from what I read but the statistics are low. On the other hand, I have non-stop headaches.  No pain reliever has helped so far.

Now, I am just relishing being bone pain free. I should be thankful that there is a drug that can help me reduce the possibility of recurrence.  But I wish there were less side effects on me.

If you are taking or have taken or know of someone who has taken tamoxifen, what side effects have you or they felt?  What recommendations were given by your/their oncologist to ease the side effects?

The journey continues... to take tamoxifen and live with the side effects that come with it or take the risk and be pain free?

No one has to face cancer alone.  

If you're a survivor, carry it as a badge of honor. 
If you know someone who is a survivor, give it as a gift of praise and encouragement.
If you know someone who was just diagnosed, give it as a gift of inspiration, that she too, can survive it. 
If you're someone who stood by someone who has fought, is fighting and will fight, 

show your support by wearing and carrying it. 

One doesn't have to be alone in the battle. I wasn't and that's how I survived.

visit Krissypineda.etsy.com and support 

"I Fought I Survived"products to help raise funds and donate a portion 
of proceeds to Young Survival Coalition

Help us in this fight against breast cancer. If you can , please help in raising funds for Krissy's Breast Cancer treatment:

My Cancerversary, Inspired to Design and Recent Tests Results

On March 17, I will be celebrating my one year cancerversary's life-saving double mastectomy with modified radical mastectomy removing both my breasts, 2 large cancerous masses and 21 lymph nodes of which 6 were cancerous. 

I celebrate this moment because it saved my life. Although it was a long and hard fought recovery, continued on to chemotherapy and radiation, I live now, one year after, a full life and able to enjoy every single day with my 3-year old son and loving husband, my family and friends.

I searched and found strength in many survivors before me. Those who have also fought and still surviving. Knowing that they have been there and its possible to get through it no matter how hard it may seem. And now I vow to become one of those who can share my stories and give inspiration to those who are about to fight the battle.

I have created this series of designs to help raise funds to donate to Young Survival Coalition, a group of young women who have had breast cancer at a young age and survived it. They have inspired and pushed me to go on because I know they were also young as I was. Every purchase will contribute $3 to YSC. It will help young women with breast cancer learn more on how to cope during diagnosis, treatment and getting back on their feet.

click to buy the Black "I Fought I Survived" Iphone 4 Case
 $19.99

click this button to buy the Brown "I Fought I Survived" Iphone 4/4s case
$19.99

If you're a survivor, carry it as a badge of honor.  

If you know someone who is a survivor, give it as a gift of praise and encouragement.

If you know someone who was just diagnosed, give it as a gift of inspiration, 
that she too, can survive it. 

One doesn't have to be alone in the battle.  I wasn't and that's how I survived.  

P.S.  As I celebrate my one year anniversary, I was given another gift of survival.  My PET Scan, Brain MRI, CT Scans and blood works show no signs of metastasis or spreading of cancer in my brain, bones, liver or lungs.  Although 1 out 3 tumor markers were elevated, my oncologist is running more tests such as thyroid blood tests to determine what is causing this tumor marker (CEA or CarcinoEmbryonic Antigen) to be elevated.  I am also taking a break from my cancer medication Tamoxifen for two weeks to see if it is what's causing my tumor marker elevation and bone pains.

After two weeks, I need to get back on my medication because it is the only shield I have right now against cancer from coming back.

My scan also showed that my right lung was scarred by radiation which has been causing prolonged periods of cough and shortness of breath.  I have yet to see a pulmonologist to help me recover from this.

I will continue to write the progress as tests come in.  Thank you for thinking of me and for the prayers.

Finished Radiation and Hopefully On To Remission

I apologize for not being able to blog for a while.  Aside from tiredness from the daily radiation, I have been anxious about what's next after treatments.

On October 10, I finally graduated from radiation.  Daily doses of 200 cGy (Centigrey) of radiation made me very tired but generally well.  I tolerated the treatment better than Chemotherapy.  I had 25 rounds of daily treatments , Monday through Friday and 10 days of treatments of booster, high doses of radiation.

Only my right breast was radiated because it is where cancer was and because cancer has invaded my lymph nodes.  Radiation was meant to kill remaining cancer cells that has travelled through the lymph and the local areas (breast tissues, skin, chest and armpit).

I did not feel any pain during treatments.  In fact, it felt like I was getting xrays for longer periods everyday.  The effect of radiation started along the 4th to 5th week of treatments.  My skin started to itch a lot which were not alleviated by scratching.  Once I scratch relentlessly, the skin started to come off and bleed.  It was like a third-degree burn.  I took a lot of pain medications, benadryl, hydrocortisone cream  and radiation cream to ease the side-effects.

Click here to see the after effects of radiation 

(warning: actual picture of breast after surgery and radiation)

Two weeks after I finished radiations, my skin started to heal.  I still feel the itching and pain until now (one month after the last treatment session) but it is subsiding little by little. I'm still feeling the side-effects of chemotherapy, like nausea and bone pains.  But I was told that it can take up to six months for the side effects to totally go away. 

This week, the first week of November, I saw my doctors for follow up.  My oncologist took a blood test which will determine my tumor marker CA27.29 and other blood levels.  Most important is the tumor marker because this will indicate if the treatment has been effective or not and if the cancer has spread to other organs. 

Depending on the result of the blood test, I may go for further tests (PET Scan, MRI and CT Scan).  For now, my oncologist's diagnosis/impression is NED (No Evidence of Disease).  This is one of the better news a breast cancer patient wants to hear!

I will regularly see my oncologist, breast surgeon and radiation oncologist every three months to monitor my condition.

My oncologist has put me on hormone therapy Tamoxifen, an estrogen blocker to prevent the spread of breast cancer cells and prevent recurrence. I will be taking it for five years.

With 5 years of being NED, I will be considered in remission and with 10 years of NED, I will be considered, "cancer-free"!  I look forward to that day!

I will have my 2nd stage of reconstruction surgery on November 22.

The battle continues but life goes on... with more prayers and a lot of courage and faith, I am hoping for weeks to turn into months, into years and finally be free from the "C".

Help us in this fight against breast cancer. If you can , please help in raising funds for Krissy's Breast Cancer treatment:

 

5x7 Folded Card

Cherry Branches Thank You Card

Elegant thank you cards and notes by Shutterfly.

View the entire collection of cards.

You All Loved Me Through It

New found friend Linda, taken during chemo when I first met her which happens to be her birthday.

I met Linda in one of my chemo sessions.  She was very friendly.  Though she looked skinny, she is such a strong woman to me. She has been going through chemo for 8 years now and  I admire her resilience.  I only had 5 months of chemo and I almost quit.  I can't imagine going through it for years.  She has ovarian cancer which is tougher to detect and treat than breast cancer.  


One thing that is common to both of us is we are both BRCA positive cancer patients.  The Breast Cancer (BRCA) gene mutation increases the risk of breast cancer by 85% and increases the risk of ovarian cancer by 45%.


We talked a lot on our first meeting.  From where she could get a good iPad cover to more serious matters like cancer.  She became like a big sister to me, with tips on how to manage chemo's side-effects because she has been through it I guess for so many times.  I admire how she is still standing strong fighting and continuously believing that after all these years, chemo will help cure her ovarian cancer.  Aside from home remedies to alleviate the side-effects, she also mentioned a support group that she goes to regularly.


She invited me to join F.O.R.C.E., which stands for Facing Our Risk of Cancer Empowered.  It's an organization of  those who have hereditary genes BRCA 1 and 2 or have a family history of cancer. Having the BRCA gene like I do, we are at a higher risk of breast and ovarian cancer at any point in our lives. 


I was so caught up with my chemo that I didn't contact them for a long time. I was afraid that I cannot commit fully in attending the meetings once I start because I might not feel too well all the time.  I was also too shy or afraid to be in a big group to share my story. 


But all my fears subsided once I felt the warm reception from those with whom I've shared my story. The meeting was attended by about 30 women. We broke into two groups and started giving our introductions.  


Every woman's story was different. Every woman's reason for joining was unique.  I thought I would feel alienated being young with cancer but I was proved wrong.  In our smaller group, 4 of us were relatively young and 10 were older.  One woman had almost exactly the same experience like I had.  Being the newest in the group, I thought I would not have anything to contribute because I was pretty sure they all have gone through what I went through. But as I was introducing myself and my experience, everyone started crying. I couldn't help but cry too. I exceeded the one-minute limit of introduction but the moderator did not care. It was a moment that they all made me feel I was not alone in this journey. 


After hearing everyone's story, the group opened ourselves to questions and answers based on our own experiences.  I was surprised to find out that the one male in the group was a resource person. Dr. Richard Frieder, Medical Director of Genetic Testing/ Cancer Risk Assessment & Prevention, assisted us in understanding the medical side of our experiences.  We all have questions of "where do we go from here?" . 


Knowing we have the BRCA gene, we are all faced with the challenge of whether we will take steps to face our circumstance head-on or do we just acknowledge our risk?  What are the choices we have to make? What do we see in our future?


I have been anxious about this surgery ever since I was told that I need to get my ovaries removed before I turn 40.  But after hearing the stories of three women who have proactively had oophorectomy (surgical removal of the ovary), I felt relieved. They are doing well, living well and have taken the dark cloud over their heads out because of the surgery.

My share of experiences also helped some women who were contemplating on what to expect with double mastectomy, reconstruction, chemotherapy and radiation.  Some of these women have not gone through any of these yet and I was so happy to be of help.  


In the end, we were all invited to a "show and tell" where we can show our surgeries and reconstructions so that those who are trying to decide what kind they will have can have an informed decision. At first I was shy to show my breasts and abdominal scars but seeing how it will help other women, I became open to sharing mine. 


Despite our unique experiences, one thing I found out is common among us : all of us had our families and friends to lean on at this time of difficulty.  We could not have been strong enough without the love and support that we get from everyone around us.  Physically, mentally and emotionally we have all been challenged by cancer.  It didn't matter whether one is young or older.  It affects our lives all just the same.  


This group and our own little circles of life have been our stronghold.  The ropes that held us.  


I am so thankful that I decided to join the group.  From here on, I will become a source of strength for other cancer warriors like myself at the same time gain courage from them. It is something I look forward to.  Just like I look forward to seeing my family every day that I wake up and hearing from friends all over the world.

The odds are 1 out of 3 people worldwide know of someone who has cancer.  A little note, a pat on the back, a simple hello will make a difference in that person's life dealing with the big C.  Thank you, you all held my hand through it all with your love.



P.S. I want to share this song by Martina Mcbride written for breast cancer warriors and survivors, their families and their friends.  I also want to share an article contributed by David Haas, one of our blog readers who has been researching about the importance of support groups as a coping mechanism among cancer patients.  

Help us in this fight against breast cancer. If you can , please help in raising funds for Krissy's Breast Cancer treatment:

Our Unsung Survivor

Best Mother In Law in the world

On February 8, I  was on speakerphone with Jim when the doctor was giving me the news that I have cancer.  I tried to compose myself at first, I said I will not cry.  I couldn't help it.  I cried for a good 20 minutes on the phone to my husband. 


After I gathered myself, I walked out of the hospital to the parking lot and stayed in my car for a few minutes.  I feel like I haven't let all the sadness and disbelief out of my system yet so the first person I called was Judy, my mother-in-law, Jim's mom who lives in Boston,MA. I would have also called my own mom but it was 2:00 am in the Philippines. 


I cried to her, sobbing, crying like a child.  She cried with me, as if she is putting my head on her shoulders and cradling me like a baby. She kept reassuring me its gonna be okay.  She also kept saying she wishes she was here next to me and give me comfort during this difficult moment. 


As soon as we hung up the phone, she started looking for flights to come out here in Los Angeles because she wants to be there when I start getting my treatments.  She wanted to take care of me, Jim and most specially baby James because I will have surgery in a few weeks. 


Two weeks before my scheduled surgery, she was going to fly in.  But the day before her flight, something surreal happened. Not everyone knew that she was rushed to the hospital because of blood in her urine and severe abdominal pains.  


Her husband, Roman, called us that night that she has to cancel her flight to L.A. because she is being confined to the hospital. She was diagnosed with stage 3 kidney cancer. It was so unreal.  How can a family have two cancer diagnosis in one month?  How can Jim have two of his important women in his life go through cancer at the same time.  I've been concerned, how he can handle this?


Grammie, as we call Judy, has been my source of strength ever since.  She went through all the tests with courage and strength that everything will be fine.  I know deep inside she is also scared of the unknown.  Until the mass in her kidney is removed and biopsied, no one knew how bad the cancer is. 


She kept telling us how she feels bad that she can't be with us to help out.  She is so selfless.  Even at her trying times, she was still thinking of how she should help. 


Her surgery went well.  The doctors removed her malignant kidney and the tissues surrounding it.  She was stayed in the hospital for a few days and recovered at home after.  She did not need any more treatments like chemotherapy and radiation.  God answered my prayers.  I've been praying that she be spared from suffering from other treatments. 


A few weeks later, she told us that she was coming to help us  a month after her surgery.  We were concerned that she might not be well enough to be travelling, let alone taking care of us.  She was insistent. 

She arrived with Roman, her husband a day before my sister left for Singapore.  When I saw her, she was as vibrant, happy and caring as she has always been.  You wouldn't know that she just had surgery.  She was cleaning, fixing our home, vacuuming, doing laundry, taking James to the park everyday and make him take a nap. She taught James a lot of new things like a teacher (which was her profession in the early days). She shaved my falling out hair when no one will.  In the morning as soon as we woke up, you will see her in the living room, all ready for the day's work. 

I miss Grammie.  She is the mom that calms you down and inspires you to be a better person inside out.  Im so proud to be part of her family.  She is the mother-in-law you wish you can have.  Selfless, inspiring, calm but tough. She battled cancer in her own brave way. She is a survivor. An unsung survivor who doesn't talk much about her journey but is an inspiration to me for always believing that there is goodness in every situation and there always is a way. Her positivity gave me courage to fight my battle too. 


It was a blessing in disguise that she was diagnosed before she left for Los Angeles and that the cancer was caught early.  It has been a surreal journey for both of us and Im proud that she beat cancer!  I would love to be called a survivor like her.  We love her much. 

Cancer Support Networks Promote Recovery Both Online and In Person

This blog post was contributed by one of our readers,  David Haas.

While there are a number of factors that tend to be present in those that survive cancer, one of the most significant and powerful contributors is the presence of a loving support network. The genuine care, concern and understanding of other people has a healing effect that is undeniable. The energy of such a network is crucial at all phases of the healing and recovery process.

One powerful and beneficial way for cancer patients to receive support is through cancer survivor networks and programs both online and in person. A recent article on the Mayo Clinic website stated, "A support group can help you cope better and feel less isolated as you make connections with others facing similar challenges."

Cancer survivor networks and programs can take many forms. Often it is a weekly or bi-weekly meeting in a public location such as a church or hospital, but meetings can also take place more informally in peoples' homes. At these meetings, participants usually sit in a circle and share details about their illness, treatment and steps to recovery. Meetings can feature a guest speaker or participants might watch an inspiring movie. They share what is working for them and what isn't. They celebrate their successes and milestones as well as receive support when there are setbacks.  Often times cancer support groups are even open to friends and family of participants as well.

One of the most well-known and longstanding support networks is Gilda's Club, inspired by the late Gilda Radner. Based on her experiences with breast cancer, Gilda adopted the mindset, "no one should face cancer alone." Gilda's husband Gene Wilder and friends Joel Siegel and Mandy Patinkin teamed up with the West Coast Wellness Community to help start what would eventually become a worldwide network of cancer support groups. To this day, Gilda's Club remains true to Gilda's ideal that no one should have to face cancer alone.

Gilda's Club has been the inspiration for many other formal and informal cancer support groups. From cancers with high survival rates such as skin cancer and breast cancer to the more rare cancers like mesothelioma.  These terminal illnesses are where cancer support groups can really be helpful, because of the low mesothelioma life expectancy it is hard to cope with the deadliness of this disease. These groups make it easier. The Internet can also be a valuable resource, allowing cancer patients to connect with others between meetings via forums and message boards to share resources and support. Online or in person, cancer support networks are invaluable in every phase of the recovery process.

I Graduated from Chemo, On To Radiation

My loving nurses (L-R) Maria, Nancy, Sudra & Flora)

Two lumps, 6 six affected lymph nodes, 21 removed lymph nodes, two mastectomies, three surgeries, 4 successful embryo preservation, 6 chemotherapies later, I have graduated from Chemo and I am on my way to finish 35 radiation therapies.

So many things have happened since I first found out the small lump that progressed to two lumps and then proliferated my lymph nodes from 1 to 6 in a matter of 5 months.

Even though my cancer stage is 3, I am still lucky to be alive.  Had it not been excised from my body that soon, I am not sure if I would still be around writing a blog right now.

The cancer was aggressive.  From one lump in October, it became 2 in December.  From one lymph node affected and detected in February, it became 6 in March.  I'm pretty sure the cancer would not have stalled any longer attacking the rest of my body if it wasn't removed right away.  I am glad I decided to have the surgery first and did not think twice. Sure, the recovery was rough and hard for me and my family but it was necessary.

I almost thought twice about having chemotherapy because of the horror stories I have read.  True enough, the experience was not one to forget.  It was a roller-coaster of emotional and physical pains. The anticipation of getting sick every other week was tough to deal with but I made it through.  I have attempted to quit so many times, cried to husband begging him to let me quit.  But his persistence and support held the ropes for me.  The loving and kind words from all my friends and families gave me strength to fight every three weeks of infusion.   It felt like being poisoned slowly, ironically, it is something that should heal me.

The loving and caring hands of all my chemo nurses Nancy, Flora, Maria and Sudra was a blessing.  They made sure that I am comfortable during chemo, with warm blankets, snacks, medicines infused to relieve side-effects and hydration.  They took me at an hour's notice when I feel too sick and needed to be rushed to the hospital for hydration.  When we get there, they are all ready waiting for me.  They are the souls that nurtured patients at our hardest points of treatments.

On my last day of chemo, I made 24 pink cake pops (i wish I took a picture of) and gave it to them as a token of gratitude for their care.

Even though chemo is over, I will still have side-effects for as long as six months after, because the chemicals are still circulating in my body.  My nurses have told me I am always welcome to come back and get hydration or infusion of medicines to alleviate the side-effects.  And of course to drop by just to say hi and that if I am feeling better. These people are the embodiment of the true sense of the word "nurse".

Now that chemo is over, I am on to another challenge.  35 rounds of DAILY radiation.  I am confident that I can do this as long as I have the love and support of people who care about me. On to the next phase of this fight....

Help us in this fight against breast cancer. If you can , please help in raising funds for Krissy's Breast Cancer treatment:

Chemo #5: Almost there

Learning from chemo #4, when the side-effects was painful and long, we tried to avert it this time by planning to go to rehydration a day after chemo #5 and continue for more as needed.

I went in for hydration on Tuesday, a day after chemo.  It helped during the first three days, alleviating the nausea and weakness but I still cannot taste food or tolerate liquids. 

On Friday, I thought I was strong enough and volunteered to drive to Seafood City in Carson, a Filipino grocery store.  As I was driving toward the 405 freeway entrance, I felt a little weak and felt I needed to go to the bathroom.  I made a U-turn and tried to go back home.  Good thing I wasn't too far away yet.  Suddenly my vision became blurred and it turned into an all-white vision.  I couldn't see anything but white cloudy shades.  I drove 5 mph to make it home and try not to get into an accident.

When I got home, I felt too weak I could barely get up.  We decided to call Jim at work to bring me to the hospital to get rehydrated again.  While waiting for Jim, my 2-year old son James, saw me crying (which I always try to hide from him as much as I can).  He came over me to hug me and in my weakness, I placed my head over his shoulder.  I didn't expect that at his age he can understand what was going on.  But he held my head over his shoulder and I could feel that he was comforting me.  It was a moment I can never forget.

Jim had to carry me to the car and get to UCLA.  As we arrived, the nurses have prepared everything needed for me and had to bring me to a room to lie down during infusion instead of the recliner we usually sit on.  I was also given Reglan thru IV. It is an antiemetic drug used 27 years ago to fight nausea and vomiting among chemotherapy patients.  My current medications ativan, zofran, compazine and sancuso patch have not been helping and have been causing severe constipation so my oncologist decided to put me on Reglan to try if it will work.

After 3 hours, I started to feel a little stronger, enough to walk back and sit on the wheelchair.

I went back for another hydration the following Monday.  This time I felt much better and started to eat and drink normally a day after.


It has been a better chemo cycle than chemo #4 from which we have learned how to forestall the side effects.  Although we still encountered a little difficulty, I was able to recover a little faster and have been able to get more food in body.  The depression still comes every now and then, which I still cannot pinpoint the cause most of the time.  I cry sometimes, feeling deep sadness without any cause.

My Med School friends from 12 years ago, Zennia, Jad, Mitch and Carol

But most of the time I felt surges of energy than ever before.  It helped that I have been getting a lot of visits from beloved friends that I forget my moments of weakness and sadness.  I ate with gusto with them like its a feast.  

College friends Irene and Iris and kids

I've set my mind that I will make something special for Jim's birthday on July 30.  Although I wasn't sure if I would have the energy, I still prepared myself by watching tens of YouTube videos on how to make a fondant birthday cake.  I have been a big fan of two of the best cake makers I know, Chris Edrei De Leon-Soriano (Cakes by Edrei) and Mayen Bioc-Orido (Way Beyond Cakes).  I know I couldn't do their works of art as well but their inspiration was enough for me to try making my first cake, for Jim.

Chocolate cake with buttercream icing and white fondant

Red velvet cake with buttercream icing and blue fondant with chocolate icing trims

I made it when Jim was at work, in between rest times, taking care of James and some household chores (which my mostly takes care of).  We also made a tray of Lumpiang Shanghai (Filipino egg rolls).  James and I surprised Jim with the cakes and Lumpia by bringing it to his work on his birthday.  Yes, he worked on his birthday.

I was happy that most of his co-workers, including Jim of course, liked the cakes and the lumpia. 

I never imagined how tiring and tedious cake-making was until I tried it myself.  All the more I admire how my friends Edrei (who is undergoing regular dialysis) and Mayen (who has a four year old and a newborn) can do this excellently.  If you visit their pages (please click the links above) you will see how great their cakes are.  I will almost think twice eating it and might just want to display it.

Aside from my friends visiting, one thing that has given me a lot of strength to fight chemo#5 is the effort and love of friends from Manila, Philippines.  A group of friends is organizing a benefit dinner on August 27 at the Orchid Gardens Suites, to help raise funds for my treatments and to help raise awareness on breast cancer among young women and men and on hereditary breast and ovarian cancer gene (BRCA gene).  They have opened the event to everyone who would like to join.  I never imagined that so many people care so much to make this event possible.  I wish I will be able to join them physically, if were not still undergoing treatment.

Next chemo, on August 8,  will be my last (hopefully!).  We will know if I need more chemotherapy or other treatments after they run PET scans, MRI, blood tests, ultrasound and full body scans the following week.  I will start radiation therapy on August 19, Monday thru Friday for 35 cycles.



I believe there's hope and an end to every challenge.  I'm almost there.  I know I will survive.

If you can , please help in raising funds for Krissy's Breast Cancer treatment:

35 and Thankful

I woke up to a great morning.  I usually check my phone emails and there they are, 250+ notifications of greetings from friends near and far. Birthday greetings flooded my facebook page and I was enveloped in happiness.  I just turned 35.

I wish I could have responded to each greeting but in my heart, I want to hug each and everyone who remembered me.

There are also a ton of things I thought I should be thankful for despite my situation.  Of course, there are moments of anxiety, frustration, pain, depression and sadness but looking back at these things I am grateful for, they make me smile.

I have learned to let go a little.  Smile more.  Appreciate more.  Love more and say it to people I love meaningfully at every chance I get.

Thankful that cancer has taught me to live life now and appreciate what lies in front of me rather than worry about what lies ahead... these make it worth every while.  

 

I have three wishes on my birthday:

- to live long to see James have children of his own

-to grow old with Jim and hold hands with him till our hairs are all grey

-to be an instrument and advocate of early detection of breast cancer among young men and women and that there be more knowledge about the BRCA genetic testing especially in the Philippines where there is none. 

If you can , please help in raising funds for Krissy's Breast Cancer treatment:

Chemo #4: I almost wanted to quit

Chemo #4 was tough. From the morning, I had to take the bus because Jim, my better half, had to take our son James to Children's Hospital. James was born with multicystic dysplastic left kidney (his left kidney is a composed of dozens of cysts looking like a kidney but it does not function), we have to take him regularly to his nephrologist and urologist at Childrens. I had to leave at 7 am to make it to my 10:00 am appointment. I was leery of taking the bus because my immune system is not as strong as it used to be and being in a enclosed public transportation, I can catch germs easily. A seemingly-homeless man was sitting next to me the whole time and even with my face mask on, I could smell something unsanitary. But I made it. I got to the hospital safe.

Usually, three to four days after Chemo, I would start to be able to taste at least strong tasting food. The first few days are really tough and I expect it. Soil-like texture of food, bitter-tasting drinks, weakness and tiredness. But this time around it was taking longer than usual.

On the sixth day, I was still weak, and cannot eat or drink anything. I called my doctor to ask if I can do anything. He told me to come in the following week (it was a saturday when I called) so they can check me out.

On the seventh day, I cannot handle the feeling of being weak anymore. I almost slept all day, I couldn't help take care of James and just couldn't walk without feeling like I will fall anytime. My hip bones down to my feet were all painful and weak. So I emailed my oncology nurse practitioner: I would like to stop at chemo #4. And I dont think I can do radiation either.

I have a scheduled initial appointment with my radiation oncologist that Thursday, July 7 and I was planning to cancel it too.

That Monday, the chemo infusion center called me early in the morning to ask if I can come in for hydration. I agreed and went to the hospital. They checked my vitals and weight and took blood tests. I lost 8 pounds in 1 week. I was also dehydrated and my heart rate was fast (135 per minute). They gave me two hours of hydration via chemo port.

After two days, I started to feel better. I started to taste the food and drinks. Although my usual drink, Gatorade, was still bitter, I found an alternative. I loved the taste of Naked Mango smoothie. It was the only drink I can tolerate for now. I even had a date night with Jim and ate a salad. Wow! I got so excited because it means this is a start of feeling better again before I go for the next infusion.

So far, this is the worst side-effects I have experienced. But even though it took longer that it used to be, I started to have hope that there will be an end to every suffering. I am so grateful for Jim and my mom. My mom took care of James the whole day while taking care of my dad too, and tried to make me eat by cooking what supposed to be really are yummy Filipino dishes. And Jim, even though he was very tired after work, he would take James out and entertain him or keep him busy to give me more time to rest.

Its amazing that a lot of people care for me so much that they go out of their way to help me recover.

Its even more amazing that there are a lot of people all over the world who care and love me. We started a fundraising to help us with the medical bills which has been summing up to $228,000 and still adding up. (chemotherapy and radiation are not yet billed). It will also be funding the possible litigation against the insurance company if we cannot resolve it by arbitration or other means.

Right now, we are awaiting for an approval or denial of my radiation treatment. We will decide what to do or where to go for my radiation treatment depending on what the insurance says.

We want to thank all of our friends and families who have helped us in the fundraising.  It was very humbling but I know all your love comes with it.  Some have donated very generously, some donated even though they dont have that much and it is a form of sacrifice, some helped by posting it in their Facebook walls, blogs and websites. Some sent a handwritten card with their donation (which I got so excited about because I seldom receive a card in the postal mail anymore). Some sent more prayers and well wishes for recovery. One friend suggested to make t-shirts which I hope will be successful. These are people whom I have known for decades, have just met these past years, and some don't even know me.

One very special friend, Mike Cortez, is publishing THREE coffee table books to raise funds. He made a preview of the book in a video below.  You can email him at senseimiyaki@gmail.com.



All these love all over the world, all the support I have been receiving made me think twice... why would I quit my treatment? No. I will finish the battle. It may be tough, but I can get through it again.

Chemo #2 and #3- Learning honesty, humility, patience and hope

Honesty, humility, patience and hope. These are some of the things I have learned in the past 6 weeks I have received two chemo treatments.

I have been waiting for the day to write a blog entry when I'm feeling more hopeful, up and energetic and can express my joys despite the current treatment I'm going through. It has taken a while.

In fact, as much as I want to deny it or conceal it from everyone, I've been depressed.  I've been reading lately how chemotherapy can bring about depression. But luckily, I am going through counseling and taking several anti-depressants.

I've been holding off writing a blog because I thought I should be this positive and strong person when I face people reading the blog.  The longer I push myself to be that person, the more I became depressed, because I feel like I'm failing people's expectations to be that strong and fighting person with cancer.

The truth is, I am having a lot to take on.  From physical pain, to anxieties of what the future holds, financial hardship from treatment costs, exhaustion from just doing normal daily activities, loneliness from not being able to socialize as before, frustration from not being able to enjoy the things I used to do and most of all, the fear of death.

Sometimes a simple question I get such as "How are you doing? Hope everything's well" is tough to face.  Should I say,  "I'm fine.  Just in a lot of pain lately and in a deep sadness which I dont know why" ?

But in counseling, my therapist told me its okay to be sad and be weak and it's okay for people to know this.  Its all part of what I am going through and will go through.  Putting on a face thats not me just puts on another burden on top of what I have.

Chemo #2 hit me hard the second day with severe nausea and fatigue. I have taken all the prescribed medicines but nothing seems to work. I felt like there's a metallic layer all over my mouth that everything I taste is like metal. I'm hungry but I cannot eat. I feel like my appetite is also decreasing. I want to get up from bed but my body refuses to. I decided that I will speak with my doctor that this is it, I will stop at chemo #2.

But I wrote about it on facebook. Everyone cheered me up. Everyone gave me hope. Everyone wanted me to fight. A stare at James playing made me want to hit myself for thinking of giving up. Jim and I  are the only people he has to take care of him. What am I thinking?

So I went on day-after-day, waiting for the side-effects to subside. The doctor finally prescribed an anti-nausea patch, Sancuso transdermal patch,  that will give me 7-days of continuous medication to relieve nausea. It gave me hope at first but when we found out that the cost is $309 per patch, that will be a total of $927 for three weeks until my next chemo. Jim just got back to work and we are a little struggling with the finances with all the expenses of my treatments.

We were able to buy one patch, and luckily, the doctor gave us a one-time discount coupon for $200 so we only had to pay $109. I cherished every day that the patch gave me the relief.

I got through three weeks from chemo #2 and was feeling great and energetic the day before chemo #3. I almost dreaded another monday of going back for another infusion.

I had chemo #3 on June 6, 2011. This time, I followed my doctor's instruction to put lidocaine numbing cream on my port and take Percocet pain medication an hour before they will stick the needles in. It worked! I didn't feel the needle at all. But this time, after the 6-hour infusion, my fatigue and stomach pain was worse than it has ever been. I don't want to get up from bed, i feel like my stomach and intestines are getting pulled out of my gut. I'm refusing to eat or drink anything (aside from 7-11's slurpee). This time, I'm decided, I don't want to go through the rest of it anymore.

And then came all the supportive messages again from friends, cheering me on. Telling me how I am inspiring them. A part of me want to tell them, "no, I'm weaker than what you think I am, I am about to quit it". But my heart just cant. How can let all these people believing in me down?

The battle in my mind of wanting to give up and staying positive makes me sometimes want to throw myself on the wall. Most of the time I feel so confused. I know its part of a cancer patient's life to be depressed and anxious and confused. This is real and I can feel it everyday. All I want is for everything to stop and go back to normal. I want my old normal life again.

All I want is:
-to taste the sour vinegar
-chew food and savor its flavor
-be able to get up and do everyday household chores
-be able to walk James to the park
-play with James at home all day if he likes to
-go out to do errands, go grocery-shopping, etc
-visit friends and spend some time just chatting over coffee
-drink and taste anything my mouth desires.
-work
-a simple trip to see the oceanside or a quiet park
-bring James to museums and parks
-wake up without feeling sick

These are the things I never appreciated before. The littlest things that seem to matter now. Humility. The simplest things matter most when you aren't given the chance to do it. I used to wish for grandier things. A house, better car, a great travel vacation, a great job, bring James to disneyland, a grand wedding, visits to the Philippines, and a whole lot of other bigger things. Now I just want to feel better today.

These two treatments have also taught me patience. No matter what my mind does, I cannot force time and space to move forward to another day with the hope that it will be better tomorrow. I have to wait. I have to go through the whole 24 hours and wait if it will feel better tomorrow. And if it doesn't, I will wait another day. This experience has made me look forward to night times, when everything is quiet and I have to go to sleep. Not feel anything and not be in pain. When my mind momentarily forgets the slow but painful effects of the treatments. Patience. I go from one day to another day. And eventually those days turn into a week and then another week. And then the whole three weeks have passed. I survived another infusion.

Hope. There is really hope in the midst of challenges. Just when I thought I will just have to endure the rest of the two weeks without the expensive patch, just because we cannot afford it for three weeks, I found a website that will help in paying for the patches if I qualified. ProstraCare, Patient Assistance Program.  I tried, applied and God is GOOD! I was approved for 4 patches a month at no cost for six months. God never ceases to let go of me. He knows when I need his help most. They just sent the first shipment and everything will be taken cared of from hereon.  The patient representative who helped me was Filipina, her name is Glory, based in Illinois and she was so sympathetic.  I felt her love and concern even just over the phone.  (I had to send her James and my picture with a thank you note for helping us through the process).

A patient's challenge doesn't end in trying to feel better everyday and getting through the rough effects of treatments.  It gets complicated by the insurance company trying to refuse to pay for the treatments from diagnosis to surgery to chemo.  The bills keep coming summing up to almost $180,000.  It is the last thing one needs at this time, to be more stressed.Studies have indicated that stress can affect tumor growth and spread, but the precise biological mechanisms underlying these effects are not well understood. Scientists have suggested that the effects of stress on the immune system may in turn affect the growth of some tumors. (Psychological Stress and Cancer)

Challenges may continue in this journey but I'll try my best to continue holding on....and continue learning.

If you can , please help in raising funds for Krissy's Breast Cancer treatment:

I Had A Dream

I had a dream last night. I was being chased by boys, some cute and some aren't! I didn't like them so what I did was take off my wig and they all went running away. But when I thought I got rid of them, there's this one guy, he was handsome and a gentleman. He didn't chase me but just approached me. But I still took off my wig (i don't know why) maybe I thought he will just go away anyway if he finds out I'm bald. But he stayed and embraced me. It was a nice dream.

When I woke up I clearly remembered my dream which is unusual because i always tend to forget my dreams. I thought about it and realized it was triggered by my conversation with Jim last night. I normally wear nothing on my head at home except when I'm too cold, I would put on my hoodie. Jim asked me if I want to shave my head already while staring at my very thin-haired head.

I said, I'm not yet sure. I don't know if I'm ready to be really totally bald. I used to say I'm going shave it off when it starts thinning out or even when it just starts to fall off. But now I'm scared to shave, i think. I asked him, "do you think i should shave it?" He paused a bit, and he said, "well....."

And then he said "I'm just thinking you might get depressed everytime you see your thinning hair". I said it's ok because I don't look at the mirror that much anymore anyway.

And then I asked him to touch my head. He hesitated a little and gave me a slight scared look. I took his hand and put it on my head. I said, "isn't it so soft?" and smiled. He said "uhmm yeah," still with the "scared and unsure" look and quickly pulled his hand away.

Maybe at the back of my mind, I took that conversation to my sleep and dreamt of something that people are afraid of my balding head. And that it makes them want to go away. And somehow someone whom i love has the same feeling. I felt a little bad about it and made me feel self-conscious and undesired.

So I shared my dream with Jim's mom in the morning. I told her the dream and the conversation I had with Jim last night. She had a different thought about it. She said maybe Jim feels bad about it for me too. Like its tough for him seeing me bald coz it makes it more real that I'm sick. Which at first, it was how i felt bad about my hair falling out, it makes it more real that I have cancer.

She also said maybe Jim feels bad about me being sick. Like the time I felt I wish I was sick instead of baby James when he was at the hospital because of his kidney condition. I always prayed that God give me any disease instead of baby James.

I felt a little better after my conversation with mother-in-law. It must be tough for Jim to see my balding head all the time and he has no choice but to see it. At least I have a choice not to see it, I just have to avoid looking at the mirror or touching my head.

It must be tough for my family. I wish I can shield them from it.

So I wrote our couple's counselor this morning. She has been helping us go through challenges that couples encounter especially during the first year of having a child. And now she still sees us through as we go through another challenging phase in our lives as a family.

I want to share what she has to say, which made me feel better and cry a little:
"Aren't dreams interesting? They definitely help you sort through and pay attention to feelings. The baldness is an adjustment for you and everyone. As you know, even someone just changing their hairstyle and color can be shocking and take awhile to get used to. I know you are in the process of making peace with your hair loss and seeing it as temporary. In my experience, people will get used to it and react off of you. I have seen people fighting cancer wear their baldness with pride and a smile, knowing it is a sign that they are doing their best to live a long life. Yes, it might scare people (including Jim) at first and be a reminder of how fragile life might be. People can be very uncomfortable talking about any kind of illness or knowing what to say- they can follow your lead when you talk openly or remain quiet, depending on how you feel. Most people know someone who has dealt with cancer and just like when you are pregnant, often feel like sharing their own stories. Of course Jim feels terrible that you are ill- he loves you and it can be a helpless feeling for a partner. In time, I think you will find that your friends and family will relax with it and focus on you and not your scalp. Honestly, you don't need to worry about shielding people from this. It is simply a reality of life. Be your beautiful, loving self Krissy and that is what will be noticed :)"

Its true, change is difficult at first. But in time, it will get easier. Its also true how most women are afraid to even change hairstyles, or even change hairstylist. Our hair may be our crowning glory but beneath and beyond it is more important.

I'm going to embrace it from now on.

________Side Note________________
Thursday was a happy day to be bald! I went to American Cancer Society's Helens Room which gave me the biggest smile that day when they asked me to come in for my wig appointment. Not only was it free, but whatever hats, caps and scarves i touched and liked, they gave it to me! More generous people should multiply on earth. They truly made me happy being bald today.

If you can , please help in raising funds for Krissy's Breast Cancer treatment: