Part 10 (Eulogy)

P.s This is my written eulogy read at my moms funeral.

Dear mom,

The death of you is an incalculable lasting blow, because no one will love me the way you loved us. The sacrifices, struggles, and pain you endured for me I will forever be grateful but never forget. At age 3, I had no knowledge of why you left me but as I got old I understood and it was so worth it. Thank you to Martina and family for accepting you and also Mary Ephraim and Grace Joseph for raising me up.  I know you loved us unconditionally but that type of love I won’t feel until I have a child of my own. You are and amazing, humble and radiant mother. You had an amazing soul. I now have an incredible testimony to tell your grandkids of how strong you were.

Despite how sick you were, you always had that bright smile on your face. You made me the happiest daughter on earth. It’s because of you and God I am who I am today; a strong woman. It’s because of you mom my faith, hope and trust in God is strong. I’ve experienced and seen what he has done for you. He is really our father, maker, the almighty and most high God. Mom, through out the years you’ve prepared me for this day. Our memories are my life solace. I remember you used to think that you were a burden in my life, I remember you apologizing to me for me having to work endlessly to take care of you, you were so worried about me not being able to go to college and having a regular young adult life. What you didn’t know was I was happy, I took it as a blessing in being able to take care of you. You’ve done so much for your kids, what kind of child would I be to live her sick mom behind. You are irreplaceable.

I don’t regret anything I did for you, I did it for us. I can go on about the many lessons and life experiences I’ve learnt from caring for you but I’ll just thank God. It was worth it all. I want you to know and everyone else to know that I am grateful that God gave me a battle I thought I couldn’t handle. I didn’t know that I was so strong. This battle taught me more and more about god. After 21 years of battling this deadly diseases, with all the chemo and radiation taken. May 2nd 2019, God decided that he’s daughter, my mom has suffered enough. I am heart broken that you are no longer here with me physically but know you are right next to me in spirit. You are my guardian angel and I thank god that your suffering has ended.  You prepared me for this day throughout the years, thank you for giving me strength. I love you my warrior queen, ma fifin, ma faustina. I will miss you dearly. My queen, you will forever be the blood that runs through my heart. I love you so much. 

Proverbs 18:10 The name of the Lord is a strong tower; the righteous run into it and are safe. Nehemiah 8:10 Do not grieve, for the joy of the Lord is your strength.

Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God.

My mom had a big beautiful funeral. Everyone wore the colors that she always wanted pink (to represent what she had), purple (her favorite color) and white (for the angel she’s become). Thank you everyone who attended my moms funeral and helped out in every way. I now have a beautiful guardian angel.

Part 9 (Hospice)

At this point the doctors told me that my moms labs and vitals were getting worse. They could no longer do anything for her, the doctor told me that we had to prepare for the worse. She had a week to two weeks left. When the doctor told me the bad news I felt my heart dropped, it felt so heavy. They gave us an option to take her home or place her in hospice. After he explained to us in deep details of what specifically hospice provides, my brother and I decided that it was the best option. The doctor told us it’s a place for terminally ill patients to sleep peacefully and comfortably. (PS notice I said sleep and not die because it sounded better). 

A few days later my mom was transferred to Boro Park Rehabilitation and Nursing Center. The doctor and nurses there were so amazing. They made sure my mom was very comfortable and pain-free. Many friends and family visited my mom. It was a heart breaking situation for everyone. Her blood pressure started getting very low. After two days of her being at hospice, just before I came to spend the day with her I was out having something to eat with my aunt (her sister).

My moms nurse called me: 

Nurse: “Hello? Is this Trisha Maxwell?”

Me: “Yes it is”

Nurse: This is your moms nurse from the hospice, can you come right now?

AT THIS MOMENT I GOT SO SCARED, I STARTED SHAKING, I SPAT OUT MY FOOD.

Me: Whats wrong? What’s wrong???!!

Nurse: your moms blood pressure is very low, I don’t think she’ll make it for the next 3 hours. 

When I got there I sat next to my mom and she took her last breath in front of me. I cried and cried and cried. When I stopped crying I felt good. I felt good because I came to realization that my mom went to a much better place and she stopped suffering. I felt good that God took her to a better place.

Part 8 (Massive stoke)

The next morning after my mom got her stomach sanctioned of all the fluid I got an alarming call. It was approximately 8am I got woken up.  

ME: “Hello?”

DOCTOR: “ Yes hello, Is this Trisha Maxwell”?

ME: “ Yes it is”

DOCTOR: “ Are you sitting or standing? We would like you to please have a sit”

ME: “Yes I’m sitting”

DOCTOR: “I’m calling you to inform you that your moms status has changed. We found your mom slumped over her chair in her room this morning a couple minutes ago. She is unresponsive.”

My heart started racing and I started to panic. I didn’t know how to react or what to feel. Visiting hours are from 11 am – 11 pm so imagine how I felt during that time. Unable to go unless it was 11am or after. All I could’ve said was “mommy please wait for me please!!” I don’t live far from the hospital so from 10:30 I was already waiting for 11 am. It was the longest 30 minutes of my life.

When it was finally 11 am I rushed up to see my mom. The doctor told me she had pulled out her nasogastric tube and also her oxygen so they had to put restrains on her. Her left side of her body was completely dead due to the stroke. She was barely opening her eyes any more, and she was moving uncontrollably. Please keep in mind that my mom hasn’t eaten for nearly a month. The doctor told us they were no longer able to do her reconstructive surgery to her stomach because she had the stroke. The next option was to apply a tube to her stomach which they were unsure-of. A couple of days later my mom wasn’t getting any better.

To anyone wondering why do I apply these photos, when I started this blog I asked my mom before, including asking permission for displaying her pictures.

After stroke, nasogastric tube was replaced. Restrains were applied to arms.

Part 7 (Nasogastric Tube)

A few weeks after my mom got the Nephrostomy tubes everything changed for the worse. At this point the Retroperitoneal cavity fibrosis tissues was getting worse. My mom was no longer eating nor drinking. She was unable to do her daily routine. My mom could barely walk without breathing like she just ran a flight of stairs. She was getting weaker and weaker. My mom would moan and scream in so much pain all through the day and night. 

She drank many oxycodones but it didn’t help. She barely had any bowel movements and urination being done. We were in and out of the hospital, my mom would spend days there. They couldn’t find what was really wrong, she was in excruciating pain, only morphine worked for her. They changed her nephrostomy tubes but that didn’t help either. She had multiple cat scans and X-rays done, finally we got an answer. My mom had fibrosis tissue growing in her small intestines, her gall bladder was infected.

Being that her small intestines was blocked, there was no way for her fluid to pass through after her stomach. According to her doctor on the Cat scan her stomach was big as a balloon. This is why she no longer ate nor drunk anything and even if she did, minutes later she’d throw up. My moms Labs were looking really bad. Her stomach had to get drained out in order to continue with a next procedure which consist of her surgically getting her small intestines unblocked area reconstruction to the stomach. The other option was to place a small tube in the small intestines.

In order to get her stomach drain out my mom did a procedure called Nasogastric Intubation. This procedure had to be done in order to move forward with the reconstruction of her small intestines. Nasogastric Intubation is the process of inserting a nasogastric tube (which is flexible and plastic) through the nose, pass through the throat and down into the stomach. After this process is done a canister and is placed at the other end to suction out the fluid. Below are pictures attached.

Nasogastric tubes suctioning out fluid
Two litres suctioned 3 minutes after insertion of tube

Part 6 (Nephrostomy tubes)

Towards the end of 2018, my mom kept having back pains for a couple weeks. Every night I’d massage it with an ointment called Tiger Balm, but that wouldn’t help. She had her annual CAT Scan due, so we waited which was just a few days away. When my mom took the CAT Scan they told her that, her kidneys were swollen which would explain her lower back pains. To reduce the swelling she was prescribed Prednisone. Prednisone is a type of steroid that can help lower certain immune related symptoms, including inflammation and swelling. Two weeks later of taking the steroid it didn’t work. It actually did the opposite for my mom, she got all the side effects. She had swelling in her hands, feet and face, she was throwing up everything she ate, pain increased and increased sleeping. My mom was hospitalized after realizing and taken off the steroids because they weren’t working.

On valentines day I had to bring my mom back to the hospital because she was unable to get dress due to being in so much pain. On the 17th of February 2019 my mom got a Nephrostomy tube on the right kidney. Nephrostomy tubes is a catheter or you can say a thin tube. It’s normally placed through your skin into your kidney to drain out your urine. The nephrostomy tubes was placed in my mom because she had a blockage in her kidney which explains why both her kidneys were swollen. Three days after the doctor decided to put another tube on the left side but this time it would go through her skin and kidney all the way down to her bladder. The tubes were successfully place, there was a lot of urine being drained out.

Three weeks later my mom started having high fever, server pain, excess weakness, shortness of breath and sleeping majority of the day. I had to call ambulance because that was very abnormal. My mom would scream so much in pain. The tubes gave her an infection due to it being a foreign object to the human body. Since then my mom has been doing alright, her appetite is not quite there yet, and we have been in and out of the hospital but God is good ! I have attached pictures down below.

First tube inserted
weeks after tubes inserted
bags for urine to drain in.

Part 5 (Gamma knife surgery)

Now that my mom was fully recovered, everything was going good. We fast-forward to 2016, when my mom started having Transient ischemic attack (TIA/mini stroke). TIA is short stoke like attack that, despite recovering within minutes to hours, still requires immediate medical attention to distinguish from an actual stroke. Her symptoms would normally start off with numbness or tingling feeling on the right side of her body (arms and legs), they sometimes feel heavy, her speech would be slurred, her tongue and mouth would be lopsided and her breathing would get a bit heavier than usual. Seeing that all her symptoms happens on the right side, this usually means she has a temporary artery blockage to the left side of her brain. This TIA attacks happen because of her open brain surgery she had and her chemo therapy.

These TIA normally happens twice a week or sometimes three times a week, I always called the ambulance every-time it happened. At the hospital after running test; including lumbar puncture (spinal tap) which is to test a small amount go cerebrospinal fluid for cancer, according to the imaging as well she had lessons in her brain. Lessons in the brain appears as dark or light spots that don’t look like normal brain tissue. It may involve small to large areas of the brain. At this point I’m thing “ again? Just why? Why won’t cancer give up !!”.

My mom was given a referral to NYU Langone hospital where the treatment for the problem was better. At NYU Langone Hospital my mom had another CAT snack and MRI, and they saw the lessons as well. She was then schedule for a Gamma Knife Procedure. Gamma knife surgery is an almost painless computer guide procedure that delivers highly focused radiation to tumors in the brain. With this procedure the Gamma rays is target directly at the tumor/lesson in the brain. The day of the surgery my mom was prepped but before the surgery was started my mom had to do another MRI to ensure that the lessons were there. In results to the MRI the lessons were no longer there, therefor the surgery couldn’t be done. THANKS GOD !!

Three months later my mom had another MRI which also still showed up clear, to this day MRI are still being done. The TIA have also stopped. They happen once a blue. Below are pictures of the prepped Gamma Knife surgery, the brace was screwed to her skull. They were taken before finding out her MRI was clear. Despite everything that is going on my mom hasn’t shown any form of emotion, she is always happy and always kept a positive energy. Her faith in God is always strong, I’m a strong believer in that’s what keeps her going. She never forgets to thank him no matter what she goes through. I have to keep strong for my mom and my self. Keep the faith and fight the fight!

Prepared for GKS

Coping

In the past few blog post I’ve been speaking about my moms health, but today I’m going to speak on my mental health through the past few years. I’ve contemplated speaking on it because I’m not looking for sympathy. I’m sharing this for people in similar situation can relate to me and not feel alone. I’m also going to talk about how I handle my depression and I hope my method helps one out there.

Having parents with cancer is not an easy thing to deal with; from the constant therapies to surgeries, medication and fear is not. You never know when a test comes back saying “its positive”. It’s not only one parent but both. It’s been physically and mentally exhausting to me. With my dad wasn’t much part of my life I still feel a painful empty space from loosing him. My moms current situation is what hurts me the most, it makes me feel useless. We have such an amazing bond, I hate seeing someone I love so much in such pain. The side effects of cancer is not an easy site, you get to see a loved one lose their hair, loose excessive weight, go under surgery etc. It has not been an easy journey and will never be. There are nights I wake up crying cause and nights I struggle to sleep a bit. I’m not always okay, I’m very good at hiding my feelings. I sometimes feel like I’m in a dark space in life.

At some point I became anti social, I’d delete my social media accounts to stay away from people, I’d burn bridges with people for no reason. I have mood swings which are bad, my appetite is not always there. There are times I feel restless, useless and randomly I’d get very emotional. When my mom felt sick again I turned to the wrong people for support, I will never forget the way I was being treated by them. There are times I feel afraid. Up to this day like today I still feel some of this pain, in the future blog post you will know why. Despite everything I’m happy that I get to take care of my mom, I’m not able to finish college but I will someday. I’m happy I get the time I’ve lost to spend it with her.

Some ways I’ve dealt and currently dealing with my depression is writing (which is what I’m currently doing), started going gym or random walks, I did online free therapy with http://www.7cups.com (they were so helpful), I listen to music and most importantly I PRAY !! Always remember you can’t go through anything without praying to God.

“Heavenly Father, please strengthen our hearts, and remind us to encourage one another when the troubles of life start to overwhelm us. Please guard our hearts from depression. Give us the strength up to rise up each day and fight against the struggles which seek to weigh us down. Amen.” ~ John Barnett

Part 4 (Recovery)

Despite all the surgeries and therapy, my mom was better physically and good mentally. I’d ask her is she felt sad or down but her response is always positive. She always tells me ‘I feel normal, I’m not stressing it, the more you talk about it; the more you give it value and life.’ Her faith in God is always so strong. If you have faith in God, all things will work together for good. He works in mysterious ways; the fight is not ours it belongs to God.

Upon getting her surgical staples removed from her brain surgery, she went through another 6 rounds of radiation. The side effects she had included discoloration to her face and top part of her head, she had a bald spot and tenderness. Her long-term side effects include she can no longer stay on the phone for long neither listen to any sort of loud sounds. A few months later, after my mom recovered, the cancer is now stable and is considered as stage 4. She was prescribed seizure medications to prevent them from happening since she did open brain surgery but never took them.

Her oncologist placed her on a light chemo to prevent the cancer from coming back, this light chemo is call Herceptin. Herceptin (Trastuzumab) is a type of chemo used to treat breast (HER2 positive), stomach and esophageal cancer. It is use to limit the production that produce the HER2/neu protein. She’s also currently on chemo pills which are Tykerb (Lapatinib). This chemo pill can treat all types of cancer, including breast cancer. It woks by slowing down the growth of cancer cells. She currently receives the Herceptin once every three weeks and the taker is taken two pills, twice daily. These chemo therapy’s are to be taken for life. Through out the years my mom also developed high blood pressure and high cholesterol.

My mom received prosthetic breast since she didn’t want breast implants. In the pictures below you will see them displayed on her.

Receiving Herceptin chemo 2014 after recovering from breast and brain surgery and radiation.
Months after all radiation and chemo. Face is still darker than rest of body.
Summer 2015, hair is growing back, receiving Herceptin chemo.

To be continued ) 04/03/2019

Part 3 (Brain cancer)

After her radiation and chemotherapy her doctor told her that she wouldn’t be able to lift her hands up high anymore because of the bilateral surgery. He also recommended her to do hand therapy at home, in which she had to place her finger on the wall and make it slowly crawl going up. Eventually my mom was able to lift her hands up high again after weeks of trying this therapy. With all this going on my mom and I struggled a lot financially. I was just a few months away graduating from high school. People I thought that would financially and emotionally help me turned their backs away, but that was okay because. I am very thankful for you all, it meant a lot to my mom and I.

In the last week of January my mom started having terrible headaches. She’d drink painkillers, but they wouldn’t work. The headache was on going for a week now, under my moms eyes were very dark. My cousin who visited my mom told her that she wasn’t looking to good, so my mom decided next day to go to the ER. They didn’t look at it like an ordinary headache or migraine seeing that her record showed she has Metastatic breast cancer. They right away did an MRI and CAT SCAN of her brain. (Magnetic resonance imaging uses a strong magnetic field of radio waves to create detailed images of the organs and tissue within the body and  CAT scans are special X-ray tests that produce cross-sectional images of the body using X-rays and a computer). The results came back bad once again, she had a 3 cm tumor in the middle part of her brain. The immediately told her “do you want to move it today or tomorrow”? She couldn’t because we had a small fee to pay of $300 which we didn’t have. Thanks to my aunt who paid it within the same week.

While she was getting her tumor out I was in school, I was out of patience. I waited all day for the doctor to call and tell me that it was a successful surgery. After school a few of my classmates and I went to visit her. I almost didn’t recognize her with the band-aide and her face, it was swelled and bruised badly like someone had beaten her up. I wish I still had pictures to display for you to see. Her surgical cut was made from one side of her temple to the other side. Thank god my mom never endured pain after her surgery. She was released four days after surgery and yes the tumor was successfully removed. 

TO BE CONTINUED 03/30/2019

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Part 2 (metastatic breast cancer)

My mom was in remission for 13 years. My dad fell sick with spinal cancer a few years after my mom left for treatment. Since after my mom left he wasn’t apart of my life; I only saw him twice just before he’s death. I was in my early teens. I left to leave with my mom in 2010 and attended high school. September 2013 my mom went to her six annual check up which wasn’t what we expected. The skin on her breast was like an orange, she was sent to do a biopsy. A couple days after doing the biopsy we got a call that the cancer had returned in both breast. Also known as metastatic breast cancer (Its also called stage 4 or advanced breast cancer). Knowing that I lose my dad to cancer I didn’t know how to feel or what to do.

She had 15 rounds of strong chemotherapy for a period of 3 weeks. After her chemo treatment she had bilateral surgery (Surgical operations performed on both left and right part of the body at the same time) late October. The surgery was very successful. I cried so much during this time, especially seeing my mom on the hospital bed in ICU. My high school class friends visited my mom a couple of times which I was thankful for. I got very depressed during this time. I use to question God on why this was happening to us especially my mom. My life was in a dark place, it was very painful. I always took Benadryl and NyQuil to numb the pain everyday. The people I once thought were my friends were the ones laughing at me, turning me down, ignoring me and telling me things like ‘nobody wants to hear about your sad stories’. I isolated my self, never liked going outside unless it’s for school or to run errands. Nobody knows what you’re going through until they go through the same or even worse.

When my moms surgical wounds were cured she had to undergo 6 rounds of radiation therapy (It is used to destroy cancer cells and or tumors that have spread to the other parts of the body, also reducing the risk of cancer re occurrence). My mom didn’t like the radiation because it burnt her skin causing blisters. On this post I attached a picture after surgery and a picture of the first day radiation therapy.

To be continued…. 03/27/2019