May's Stage IV Cancer Journey
Donation protected
This is my story (if you're not interested, please skip):
It started as what looked like a canker sore on the right side on my tongue. After about a week or so, though, it kept getting bigger and not going away. I had a dentist appointment coming up so I decided to have him check it out. When I saw him, he said it looked unusual and recommended me to an oral surgeon. I knew he knew something was wrong because he said we need an immediate biopsy. This was right before Thanksgiving of 2014. Shortly after Thanksgiving, he had me come in and gave me the news. I went in and the oral surgeon told me to take a deep breath and said, "I am sorry to be the one to tell you....the biopsy report came back...positive. Positive for Squamous Cell Carcinoma and it is malignant." I just looked at him blankly...completely ghost-like. I majored in Molecular and Cellular Biology at the University of Arizona; so I knew that was bad. I learned about it...it's cancer. "It's Oral Cancer." I sat there and just cried. I cried going home. I woke up my mom and my sisters and sat them down and told them. We all cried together. I then told my boyfriend and then my best friend. I didn't know what to do.
Because I didn't have good insurance (I had it because it was cheap....but because it was cheap, nothing was covered), I couldn't get into any ENT doctors. No one could see me. I had no choice but to wait. Finally, the new year came and I had new insurance; I finally found an ENT, who is great in Arizona and I had my surgery in Febuary. However, since I waited so long, it had spread to my lymph nodes on the right side of my neck. My ENT surgeon had removed 18 lymph nodes; however, only 1 was cancerous.
Since it affected my lymph node and the cancer basically bursted out of the "capsule membrane" (lymph nodes are surrounded by a membrane) so cancer may have still be left in the cells on my neck, I was at labelled at Stage III and had to do radiation and chemotherapy.
I went to do a CT scan and they saw something on my left side that looked concerning; a lymph node. They took local biopsy of it and it came out negative for cancer. I was happy. I only had to do my right side. So my mouth wouldn't be as dry and it wouldn't be as bad as doing my whole neck.
I had high dose of Chemotherapy 3 times for 7 weeks, along with radiation everyday. I lost almost 30 lbs., half of my hair, I was balding on my bottom right side of my head, and my right side of my neck looked burnt. I looked like I was ill. I threw up, couldn't eat, felt super fatigued and took weeks off of work.
After everything was over, I thought that was the end of it. Then, a month or so later, I saw my lymph node on the LEFT side now (the side that was negative for cancer) swell up. I didn't worry too much for it because I thought maybe I could be sick and lymph nodes swell up when that happens. However, it wasn't going away. It wasn't getting bigger but it was just there. So I decided to go back to my ENT doctor and he did a local sample of it in the office. I was scared. He said normally, Oral Cancer wouldn't "jump" to the other side, but in my case, it did. Long story short, it was postive. My oncologists and ENT surgeon had a discussion and recommended surgery first, then another round of chemo/radiation. I was devastated. I told myself after the first round, THAT WAS IT. I don't want to do radiation and chemo. It was HORRIBLE. I wouldn't wish it on ANYONE.
I finally decided to do the surgery because I want it gone.
The surgery was worse than planned because the cancer had "lingered" onto my nerves...it was nearly impossible get all the cancer out. When I woke up, I was in pain and it was hard to calm me down. They finally did with some nice pain killers but the recovery time led an outpatient surgery to an inpatient overnight stay at the hospital.
I did not decide to do radiation and chemo after surgery to just see how everything was. However, three weeks after a CT scan of my head and neck, I started swelling like crazy, my face was hot and it looked like something was wrong. I did another CT scan and in the matter of the three weeks, I went from being totally "curable" to "my life is on the line". New masses formed in my throat, and close to my ears. It was so aggressive that I had to start chemo and radiation on the same day of my follow-up report. Now I have had to do weekly chemotherapy and radiation [for what I thought was] 6 weeks...have to do one more week so 7 weeks total. I went from Stage III to Stage IV Cancer.
Because I haven't been too active, my arm veins are not as prudent compared to when I was. Nurses and doctors have been missing my veins resulting in mulitple bruises on my arms. Chemo also is really hard on veins, causing blockage and damage. This meant I had to have another surgery to put an importable-port or a port-a cath on the right side of upper chest. You can feel it but can barely see it (slight bump). It is so much better than receiving more bruises and pain than I need.
This year has been tough.
I fell into major depression and I was in a lot of pain and couldn't eat and drink.
(Somewhat) END of Story!
As of today, I just finished my 6th week of Chemotherapy and Radiation. I have one more dose of Chemo next week and I have 2 more daily doses of radiation (yay! almost done).
Took a non-pay break from work as of Monday so I can focus on my road to my recovery.
I hope by Christmas, I will be okay to spend time with my family and not be ill.
Therefore, after three surgeries (counting my port), my medical oncologist wants me to get a PICC line (a.k.a. a FEEDING TUBE...yes, you read it right) because I haven't been drinking and eating much. However, I have since convinced her I don't want one. Firstly because it is yet ANOTHER surgery; secondly, I can still eat and drink...forcefully. LOL. I am trying. On the side note, I've lost about 20 lbs so far, my hair is still coming off...slowly but surely...although, I'm trying so hard not to wash my hair so it isn't too bad [I have a wig waiting for me just in case bought for me from my lovely coworkers], my left side of my neck is balding and radiation has made my skin dark, I have lost my voice for the past few days...drinking water is a bit tough, I keep coughing afterwards. Continuing, two rounds of intensive chemotherapy and radiation, multiple CT scans/PET scans, seeing many, MANY doctors, not being able to work, now taking non-pay medical leave, trying to apply for government help (they take forever to respond), having a working mom who works really hard, two sisters who are full time students, a boyfriend who works full time and has a child, and so many more. I have to admit: I need HELP.
Normally, I am not the type of person who asks for money or begs for anything. I am the type who tries to help as much as I can. I used to volunteer(because of my sickness, it is hard to find somewhere to volunteer without really being too tired or exposed to anything beause my immune system is week), I tried to be involved in the community, etc. I love to make everyone happy because I want everyone to smile. A smile is more pleasing to see than a frown. You smile, I smile. So I try to be as optimistic as I can be.
If you know me, though, you know how sensitive I am. I cry over everything: sad/happy movies, people crying/sad, when I cannot help, people saying cheesy things, people complimenting me (yes, saying how strong I am....I cry); I AM SO EMOTIONAL.
But I am in debt. I have school/auto/insurance/credit/MEDICAL bills, etc.
It would mean so much to me, even a small amount, if everyone would help. I know it's the holiday season and everyone is tight on money but I wouldn't be asking if I truly did not need this. This would be the biggest stress reliever not have to worry about money. I am blessed to be alive. I am blessed I am here.
Thank you for reading this. Please share this, and even if you can't contribute, I am thankful for you. Maybe just keep me in your blessings. That's more than anything.
Thank you.
It started as what looked like a canker sore on the right side on my tongue. After about a week or so, though, it kept getting bigger and not going away. I had a dentist appointment coming up so I decided to have him check it out. When I saw him, he said it looked unusual and recommended me to an oral surgeon. I knew he knew something was wrong because he said we need an immediate biopsy. This was right before Thanksgiving of 2014. Shortly after Thanksgiving, he had me come in and gave me the news. I went in and the oral surgeon told me to take a deep breath and said, "I am sorry to be the one to tell you....the biopsy report came back...positive. Positive for Squamous Cell Carcinoma and it is malignant." I just looked at him blankly...completely ghost-like. I majored in Molecular and Cellular Biology at the University of Arizona; so I knew that was bad. I learned about it...it's cancer. "It's Oral Cancer." I sat there and just cried. I cried going home. I woke up my mom and my sisters and sat them down and told them. We all cried together. I then told my boyfriend and then my best friend. I didn't know what to do.
Because I didn't have good insurance (I had it because it was cheap....but because it was cheap, nothing was covered), I couldn't get into any ENT doctors. No one could see me. I had no choice but to wait. Finally, the new year came and I had new insurance; I finally found an ENT, who is great in Arizona and I had my surgery in Febuary. However, since I waited so long, it had spread to my lymph nodes on the right side of my neck. My ENT surgeon had removed 18 lymph nodes; however, only 1 was cancerous.
Since it affected my lymph node and the cancer basically bursted out of the "capsule membrane" (lymph nodes are surrounded by a membrane) so cancer may have still be left in the cells on my neck, I was at labelled at Stage III and had to do radiation and chemotherapy.I went to do a CT scan and they saw something on my left side that looked concerning; a lymph node. They took local biopsy of it and it came out negative for cancer. I was happy. I only had to do my right side. So my mouth wouldn't be as dry and it wouldn't be as bad as doing my whole neck.
I had high dose of Chemotherapy 3 times for 7 weeks, along with radiation everyday. I lost almost 30 lbs., half of my hair, I was balding on my bottom right side of my head, and my right side of my neck looked burnt. I looked like I was ill. I threw up, couldn't eat, felt super fatigued and took weeks off of work.
After everything was over, I thought that was the end of it. Then, a month or so later, I saw my lymph node on the LEFT side now (the side that was negative for cancer) swell up. I didn't worry too much for it because I thought maybe I could be sick and lymph nodes swell up when that happens. However, it wasn't going away. It wasn't getting bigger but it was just there. So I decided to go back to my ENT doctor and he did a local sample of it in the office. I was scared. He said normally, Oral Cancer wouldn't "jump" to the other side, but in my case, it did. Long story short, it was postive. My oncologists and ENT surgeon had a discussion and recommended surgery first, then another round of chemo/radiation. I was devastated. I told myself after the first round, THAT WAS IT. I don't want to do radiation and chemo. It was HORRIBLE. I wouldn't wish it on ANYONE.
I finally decided to do the surgery because I want it gone.
The surgery was worse than planned because the cancer had "lingered" onto my nerves...it was nearly impossible get all the cancer out. When I woke up, I was in pain and it was hard to calm me down. They finally did with some nice pain killers but the recovery time led an outpatient surgery to an inpatient overnight stay at the hospital. I did not decide to do radiation and chemo after surgery to just see how everything was. However, three weeks after a CT scan of my head and neck, I started swelling like crazy, my face was hot and it looked like something was wrong. I did another CT scan and in the matter of the three weeks, I went from being totally "curable" to "my life is on the line". New masses formed in my throat, and close to my ears. It was so aggressive that I had to start chemo and radiation on the same day of my follow-up report. Now I have had to do weekly chemotherapy and radiation [for what I thought was] 6 weeks...have to do one more week so 7 weeks total. I went from Stage III to Stage IV Cancer.
Because I haven't been too active, my arm veins are not as prudent compared to when I was. Nurses and doctors have been missing my veins resulting in mulitple bruises on my arms. Chemo also is really hard on veins, causing blockage and damage. This meant I had to have another surgery to put an importable-port or a port-a cath on the right side of upper chest. You can feel it but can barely see it (slight bump). It is so much better than receiving more bruises and pain than I need.
This year has been tough.
I fell into major depression and I was in a lot of pain and couldn't eat and drink.
(Somewhat) END of Story!
As of today, I just finished my 6th week of Chemotherapy and Radiation. I have one more dose of Chemo next week and I have 2 more daily doses of radiation (yay! almost done).
Took a non-pay break from work as of Monday so I can focus on my road to my recovery.
I hope by Christmas, I will be okay to spend time with my family and not be ill.
Therefore, after three surgeries (counting my port), my medical oncologist wants me to get a PICC line (a.k.a. a FEEDING TUBE...yes, you read it right) because I haven't been drinking and eating much. However, I have since convinced her I don't want one. Firstly because it is yet ANOTHER surgery; secondly, I can still eat and drink...forcefully. LOL. I am trying. On the side note, I've lost about 20 lbs so far, my hair is still coming off...slowly but surely...although, I'm trying so hard not to wash my hair so it isn't too bad [I have a wig waiting for me just in case bought for me from my lovely coworkers], my left side of my neck is balding and radiation has made my skin dark, I have lost my voice for the past few days...drinking water is a bit tough, I keep coughing afterwards. Continuing, two rounds of intensive chemotherapy and radiation, multiple CT scans/PET scans, seeing many, MANY doctors, not being able to work, now taking non-pay medical leave, trying to apply for government help (they take forever to respond), having a working mom who works really hard, two sisters who are full time students, a boyfriend who works full time and has a child, and so many more. I have to admit: I need HELP.
Normally, I am not the type of person who asks for money or begs for anything. I am the type who tries to help as much as I can. I used to volunteer(because of my sickness, it is hard to find somewhere to volunteer without really being too tired or exposed to anything beause my immune system is week), I tried to be involved in the community, etc. I love to make everyone happy because I want everyone to smile. A smile is more pleasing to see than a frown. You smile, I smile. So I try to be as optimistic as I can be.
If you know me, though, you know how sensitive I am. I cry over everything: sad/happy movies, people crying/sad, when I cannot help, people saying cheesy things, people complimenting me (yes, saying how strong I am....I cry); I AM SO EMOTIONAL.
But I am in debt. I have school/auto/insurance/credit/MEDICAL bills, etc.
It would mean so much to me, even a small amount, if everyone would help. I know it's the holiday season and everyone is tight on money but I wouldn't be asking if I truly did not need this. This would be the biggest stress reliever not have to worry about money. I am blessed to be alive. I am blessed I am here.
Thank you for reading this. Please share this, and even if you can't contribute, I am thankful for you. Maybe just keep me in your blessings. That's more than anything.
Thank you.
Organizer and beneficiary
AMayzing Phon-g
Organizer
Gilbert, AZ
Quyen Hoang
Beneficiary
