Support groups

When I was diagnosed that I had a brain tumor, I was hurting more emotionally than physically. You see my mom died of breast cancer way back 1998 and I immediately assumed I was having the same fate as she had. God and the internet were the only companions I had that time. I would always talk to God and would blog what I feel or where I was those times. I showed everyone I am strong. I also drifted away from my relatives and friends as I did not want them to be part of the grief I was going through. I worked harder to compensate for my confusion and loneliness. Every day was a day of excruciating head aches. Then one day, I decided to live. If by any chance that I would have a shorter life, I would like to live it to the fullest. I opened myself slowly to life. I searched on support groups online. There isn't much of a big community of support groups in the Philippines but with the technology nowadays, you get to have those in all areas of the world. You'll see people with the exact same conditions and situations in life. You get inspired with their stories. You receive unsolicited encouragement from strangers. They make you feel like you are not alone, they know how exactly where you are and that there's more to life than the sickness or disease that we have. This year has been a good improvement for me in terms of my health condition, the way I see, live and love life. Here's an article I'd like to share about being able to find the right support group.

Finding the Right Cancer Support Network For You

By: David Haas

Cancer is not only a threat to one’s body; it’s also a threat to one’s emotional integrity. Family and loved ones can be sympathetic and supportive, but how can they really know what you’re going through? Peer support can be a vital resource for cancer patients. A new form of cancer patient peer support group has emerged in recent years, facilitated by the Internet, that help cancer patient’s support one another. These are online cancer support networks.

Cancer support networks can be formal groups affiliated with hospital and cancer centers, administered by medical cancer specialists; they can be informal networks, put together and managed by survivors; or they can be anything in between.

While some of these groups are geared toward emotional support alone, others are oriented more practically and offer support for both the practical and financial aspects of cancer survival that can sometimes be overwhelming, things like how to find assistance with transportation, food preparation, laundry, cleaning and even childcare if you’re in a situation where you don’t have a support system to help you with those things. Cancer support groups can also point you towards financial resources in case your insurance is inadequate to meet your medical and transportation needs. Cancer support groups can help you find 24 hour cancer support lines and medical information; they can even help you formulate questions to ask your health care providers that will yield the most useful replies.

The results of several research studies suggest that finding the right cancer support group can help patients cope better with all aspects of their disease which can actually help them live longer. Online support groups may be particularly useful for people who live in rural areas or who are immobilized because of their disease. There are even cancer support groups for patients with rare cancers like mesothelioma that can help these patients feel less alone.

How do you find an online cancer support group that’s right for you? Begin with talking to your doctor, your nurses or your hospital social worker. The American Cancer Society (ACS) maintains a registry of literally thousands of cancer support groups nationwide as well as of other cancer advocacy organizations that maintain online support groups. The National Cancer Institute maintains a similar database. Affiliated with the ACS, the Cancer Survivors Network is a sophisticated Internet forum with bulletin boards and live chats. There’s a cancer support network that meets your needs waiting for you to find it.

Needles to say...

I was reminded of  the time I had my brain surgery two years ago, I wasn't scared of the actual surgery. I was more concerned on the billings (hehehe) NEEDLES. That actually freaked me out and is still freaking me out. Before a surgery, you get to have the standard tests first like ECG, X-ray, stool & urine test and of course....blood works. That was the time I had my first dextrose. I was so stressed that I had something inside my skin, I think I slept for an hour or two after. Then med techs or nurses would be inside my room everyday to get blood from me and minutes after that I would doze off. The worse experience was a day after the surgery, the nurse removed my IV (not sure if that is what you call it) My nurse friend said it was a surgical needle based on the little or as she described it as a big mark it left. The nurse then was having a little chat with my cousin as he removes the IV. I was facing the opposite side as I might die of fear. Then I suddenly felt  a warm thick liquidish flowing on my arm & unconsciously I looked at it. There I saw blood flowing out of my skin with that nurse unaware of what was happening. I felt my body weakened even more but I managed to speak and catch the attention of the nurse and my cousin who was still chatting. I closed my eyes while I can feel them rushing in movements. Never talk to a nurse when they're poking or taking out pointed things inside your body. Eversince then, I let them do their jobs and never distract them. Here are some of my photos during my confinement in TMC.

I think we were laughing here because the tape was too small. The surgical rooms were full so I was placed at the pediatrics floor for 3 days and obviously most of the things are for kiddy size including the tapes.

Everyday, they would take blood 2 or 3 times.

These needles suck the energy off me. I would doze off for an hour or two everytime

That was not the end of my needle experience. No matter how I ignore the "blood donations" at our office and how they try to sell that it's healthy...I did not go for it. I even tried manning the event and I couldn't bring myself to go inside the room. So they placed me at the registration just outside the room but still, I was fighting that fear because I could hardly feel my knees.

Then I had to go through a routinary lab test that my neurosurgeon made me take. It's called the prolactin test. They just get blood 2 - 4hours upon waking up.  I have to pray and psych myself out a couple of days before I go to The Medical City's ambulatory services. Sharing some information on this:

Here's the reference interval of the count of a normal person:
Male: 69.54 - 417.22 mIU/L
Female: 68.69 - 617.34 mIU/L

Before the surgery, my count was like 2,000+ mIU/L
After the surgery, it went up to 10,000mIU/L (test done Feb 10, 2010)
I had to take Parlodel daily to lessen the count
After one month from the first test, it went down to 7,014mIU/L (test done March 30, 2010)
After six months, it went down to 1,858mIU/L (test done October 13, 2010)
After three months, it went down to 943.50mIU/L (test done January 10, 2011)
After six months, it's now down to 794mIU/L (test done July 7, 2011)

I'm happy with the development. I can't wait to give this report to my neurosurgeon. It did not go down that much but I am happy that we're almost near to the normal count. Hopefully, this would end my needle days.

Pain is my friend

kuyakim_atienza kim atienza

morning tweeps! intervals this morning with running coach. my mantra: "pain is my friend. pain is my friend" pag may pain, lalong gagaling!

 

 

This is a tweet I read from one of the people I get amazed at. For someone like me who feels pain (sometimes excruciating ones)  everyday, Kuya Kim's mantra made me think. I know he has a different situation and I know what he wants to say but it made me think of my situation. Pain is like a friend who is with me eversince the brain surgery. Pain is like a friend who sees me in times of my struggles and understands how intensed it is. But you know what...I don't want pain to be my friend. It's tiring. You don't fight a friend. You don't curse a friend. You don't wish a friend to leave forever. A saying "No Pain, No Gain" Not in my condition. My Lord is my healer and He is my friend. Everytime there's pain, the Lord is always there for me. He has a reason and I know I will be healed....and this I claim in Jesus Name :)

The surgery

For the type of tumor I have, it is the TRANSSPHENOIDAL Surgery that is recommended, The approach is through the sphenoid sinus, one of the air spaces in the nose. The opening is really small so it is aided by high powered operating microscope. The operating microscope allows binocular vision with extremely high quality optics. Surgery can take up to 3 hours. After, I was told me to be in the ICU room for 2 days but I was bored already on my first day and was showing good signs. They released me from the hospital 2 days after.



Taken after the surgery. I looked terrible here. I looked like I just had a nose job.



The tumor

*taken from the book Living with a brain tumor and the internet*

With the help of my very informative neurosurgeon, nuero optha and other resources (book and internet), I was able to understand what I have. I remember asking my surgeon if it was something to do with my cellphone that I place near my head pillow. He gave a short laugh. Just recently, a person asked me if I bumped my head. I wanted to laugh so hard on that. There are factors like radiation, chemicals, genes etc but science has no definite answer to the causes. Well, I will tell you my non-medical friends and readers as simple as I understood it & with the resources I have.

A brain tumor is a mass of abnormal cells growing in the brain. The cells can come from anywhere from the brain to any places in the body. I have a primary brain tumor where it developed from the brain itself & it's benign :) They grow slowly and do not invade the brain tissues. Though it still a threat as it may cause pressure n important areas of the brain 

I have Pituitary Macro-Adenoma. I have a tumor that has blown up and squeezed my pituitary gland and hit my optic nerves. It is macro because it is more than 10mm in size. The Pituitary gland is found at the base of the brain and is known as the master gland, which plays a critical role in hormones, growth and reproduction. I have the prolactin -producing macroadenoma.

The Findings



My first Brain MRI with contrast experience



As per my Brain MRI result taken April 2009 at The Cardinal Santos MRI Center:

A well-marginated mass was seen which was causing marked cmpression of the optic nerves. Fairly large 3.0 x 3.0 x 4.0cm and it is hemorrhagic mass. According to my neursurgeon, this was the reason why I was blinded almost 75% and since it was bleeding, it must be taken out immediately.

The confirmation

Apr. 3, 2009 I decided to go to American Eye Center because I could no longer see from the side. As in it was black. It has been for I think a month already and everyday, I see little. I did some test and the attending doctor said to come back the next day for another test. I said yes but I was a bit uncomfotable because he kept asking me about my menstruation period as to when I had the last one. Following day I came back, did the test and recommended me to a neuro optha. He was all weird when he saw me, asking again symptoms and my companion. I said I had none. He advised me tha next time I go to doctors I should have one. Then he blurted out "You might have a brain tumor" It took me a couple of seconds to react. Then there was just tears...He said to take the Brain MRI for confirmtation.

April 6, 2009 Took my first Brain MRI ever
April 8, 2009 I got the results but of course, I needed a neuro surgeon to read it and since it was holy week, I had to wait. Though my neuro optha confirmed it when I called him and read the findings and told me to see a neurosurgeon
April 13, 2009 I went to The Medical City and met a neurosurgeon. He said I had a tumor and it needs to be removed ASAP as it has blown up.

The symptoms

The first question people would ask " How did you know?" Aside from the obvious answer that the doctor told me :) of course they would base it initially on symptoms.

Headaches - everyone gets this and I have poor eyesight so I thought it was because of my eyes. Migraines would be usually the reason. But that year, it has been getting really worse and it visits me almost every day.

Menstruation period - I thought I was just one of those who rarely gets it.

Food and water intake - year 2009, I have noticed I wanted to eat and drink more than my regular intake. I was always thirsty. I drink like a liter of water before going to bed.

Lactate - not milk but just liquid but odorless

Vision - I lost my peripheral vision. Not blurry but totally lost it. As in, black.

Mid-Feb 2009, I started having problems with my left eye. But my dad had to be rushed to the hospital because of his heart problem. I decided not to go to the doctor because I wanted to make sure I had enough money if in case my dad needs it for his operation or medication. Good thing, he didn't need it. Week after week, I would plan to go to the doctor but things were just crazy in the office and just did not have time. I even made sure I watched The Eraserhead LIVE: The Final Set concert as it is going to be their last but was hard ,as I can only see very little. It was black from my peripheral side. Near to blindness. I am scared of doctors and what they may bring to me. I delayed things hoping that when I wake up, all symptoms will be gone. 
  

The purpose

I have been diagnosed having a brain tumor on April 04, 2009. Eversince, I have been repeating this story of my life with a tumor a hundred times to a lot of people. I don't get tired of sharing it because I want people to be aware of this disease, the pains and wonders I have been going through and how it can somewhat do something in their lives. Though lately, I have noticed how my memory is failing me. Not sure if it has something with the surgery, the anesthesia or I'm just getting old. It just worries me that one day, I may not remember the details. I blogged this before and I am just re-writting it. I will try my best to make it interesting :)

I hope that you would be with me on this journey. Feel free to make comments.