One thing I won't be able to avoid is taking a variety of medications throughout my treatment. :-(
This week I refilled my normal prescription. I am diabetic, therefore, I take two types of insulin, a blood pressure med, something for cholesterol, metformin, and baby aspirin. Plus, I need the needles, blood sugar test strips, lancets, alcohol swabs, etc.... My co-pay for all of that is around $70 p/month. I got to the pharmacy and my oncologist had ordered several more meds which came to over an additional $50. I barely had enough to pay for my regular meds and I had to reject the cancer meds--no idea what they were or are for. I figured I' be able to go back on Friday, once I get paid, and purchase the new drugs, but I also knew that doing that would mean juggling rent and other bills.
Yesterday, after work and after my nap, I found I had a voicemail message from the oncologist. She needed to know which pharmacy I use, because she needed to order a couple more medications before I have the port installed on Thursday.
I do not know how I am going to do this.
I am trying to be positive. I'm told those happy thought and good vibes are key to successful healing. I am told to avoid stress.... but how can when I am not making enough $$$ to support El Jay and myself? I need these drugs as part of my treatment, but I can't afford them.
I see the surgeon on Monday. The port will be put in place on Thursday and it looks like I start chemo on Febr. 3rd.
Saturday, January 25, 2014
Friday, January 17, 2014
Being a BOOB
Why is it that every time I tell someone that I have breast cancer,
they look down at my boobs?
When they stare too long,
I want to ask,
"Would you like to feel how big the lump is?
Would you like to touch it?"
When they stare too long,
I want to ask,
"Would you like to feel how big the lump is?
Would you like to touch it?"
No Treatment Plan Yet
Yesterday I was scheduled to meet with both the surgeon and oncologist. It is a long story and I know I need to record it, because it was another one of those "It Only Happens to Tina" things.
Basically, the surgeon was running late and forgot about me. I had been taken to the an exam room and forgotten. People went home, the office closed..... when she did see me it was to say that I'd have to reschedule because I was never on her list of appointments. Hogwash. How did I end up making it thru check in, asked for a co-pay, my vitals taken, and eventually left in the exam room? I don't remember what I said. At that moment, I felt exhausted and drained.
I think I said, "But that means it will be two or three-weeks longer before I can begin treatment and it has already been twelve-weeks."
She said she hadn't seen the films from all of the testing, but she had glanced over the written reports and she was going to recommend I start with chemo, because she would rather shrink the tumor before surgery. She said, "You really don't want to disfigure your breast unnecessarily, do you?"
I answered that I didn't want to have cancer, but would do what I had to to get rid of it.
Then she made a comment that went over my head at the time, but has come back to haunt me. It was something about from personal experience recently she had operated at the wrong time and would rather not do that again. HUH? Maybe..... I should find a different surgeon. She repeated that i would have to reschedule, but she had already decided she did not want to operate yet.
I asked how she could know that without doing an exam. So, she asked me to get on the examining table. I said, "Without changing?" Sure, just pul your top up. So, I did as asked. She left me sitting up, she felt, she probbed, she said the tumor was about 2.5 centimeters and the one lymph node was very small.
The other doctor walked in right then. They had a discussion and the surgeon left. The oncologist went over the results of all the procedures and she said she had been worried they would not be as good as they were, but the cancer has not spread yet and my heart is strong enough to handle chemo. She examined me. We discussed chemo. I met the nurse practitioner who is her assistant. The oncologist said they would reschedule the surgeon, because she felt the tumor was closer to 4.0 centimeters and that she felt more than one lymph node was involved and that they were quite swollen and matted together.
So again, I am back to waiting. I must see the surgeon before anything else can be done.
I suppose if we start chemo first, the soonest the port can be put in will be in about three weeks with chemo starting on February 10th.
Basically, the surgeon was running late and forgot about me. I had been taken to the an exam room and forgotten. People went home, the office closed..... when she did see me it was to say that I'd have to reschedule because I was never on her list of appointments. Hogwash. How did I end up making it thru check in, asked for a co-pay, my vitals taken, and eventually left in the exam room? I don't remember what I said. At that moment, I felt exhausted and drained.
I think I said, "But that means it will be two or three-weeks longer before I can begin treatment and it has already been twelve-weeks."
She said she hadn't seen the films from all of the testing, but she had glanced over the written reports and she was going to recommend I start with chemo, because she would rather shrink the tumor before surgery. She said, "You really don't want to disfigure your breast unnecessarily, do you?"
I answered that I didn't want to have cancer, but would do what I had to to get rid of it.
Then she made a comment that went over my head at the time, but has come back to haunt me. It was something about from personal experience recently she had operated at the wrong time and would rather not do that again. HUH? Maybe..... I should find a different surgeon. She repeated that i would have to reschedule, but she had already decided she did not want to operate yet.
I asked how she could know that without doing an exam. So, she asked me to get on the examining table. I said, "Without changing?" Sure, just pul your top up. So, I did as asked. She left me sitting up, she felt, she probbed, she said the tumor was about 2.5 centimeters and the one lymph node was very small.
The other doctor walked in right then. They had a discussion and the surgeon left. The oncologist went over the results of all the procedures and she said she had been worried they would not be as good as they were, but the cancer has not spread yet and my heart is strong enough to handle chemo. She examined me. We discussed chemo. I met the nurse practitioner who is her assistant. The oncologist said they would reschedule the surgeon, because she felt the tumor was closer to 4.0 centimeters and that she felt more than one lymph node was involved and that they were quite swollen and matted together.
So again, I am back to waiting. I must see the surgeon before anything else can be done.
I suppose if we start chemo first, the soonest the port can be put in will be in about three weeks with chemo starting on February 10th.
Wednesday, January 15, 2014
RIP Abuelita
El Jay's Abuelita passed away today. She was 90-years old and had suffered from Alzheimer for as long as I knew her. I can honestly say that I loved my x-mother-in-law. She was a beautiful person inside and out. She only had an elementary school education and never learned to speak English, but she was intelligent and hardworking. Back when Avon didn't make catalogs in Spanish, she still managed to be one of the top Avon sales people in he Los Angeles area.
I am grateful that becaus eof her alzheimers she didn't understand what was going on with her sons. I think she would have been appalled if she had known that at least one is now a registered sex offender. She didn't deserve the terrible care another son gave her, as he slowly killed her by neglect. She didn't deserve having her son steal the money she worked so hard to save. I am glad she was in good hands during the last two years.
For awhile, while we lived next door to her, at night i would dream that her spirit would come to me and take my hand and say, "Come with me. Come meet my friends. Come dance with us." And together we would travel and she would joyously greet her first husband, Ignosio and they would dance. She was always so radiant and happy in these journey's we took together. I always loved that at these times there was no language barrier.
One night I asked her why she always came and got me to travel with her in our dreams and she said that she knew I would take good care of her and always make sure she came home. My reply was that she could stay and dance in the stars with Ignasio, that she didn't need to come back to Earth. But no, she told me, it wasn't time for her yet.
Last night I dreamed that same dream again, after so many years, and this morning she was gone.
RIP Josefina Perea Reyes.
This is the last foto of took of Abuelita. Somewhere in storage I do have a few pictures of her when she was young.
I edited this to add the photo we took at Abuelita's celebration of life. I wanted El Jay to have a picture with his dad's family. They insisted I be in the photo too. We used his little camera and I used photo-shop to improve it. I didn't crop the dog out, because he is part of the family too. From back left--me, Pat, Marco, Sabrina, Dante. Front row, El Jay Rey, and Tio Jose (Joe). Joe is El Jay's dad's middle biological brother. SUB was the youngest brother. In addition to his two bio brothers, he had two older half brothers. One from his dad's first marriage and one from Abuelita's first marriage. El Jay has two full Reyes cousins only, Marco and Sabrina (Sabrina is married to Dante and they are expecting their first baby in May.) El Jay also has one half cousin through Abuelita's oldest son and that cousin, Stevie, has a son who is 7 or 8 months younger than El Jay, named Nathan. Plus, several half cousins through SUBS Dad's oldest son--but we have never met them. I think it is sad that he has family on his dad's side that he will never know.
I am grateful that becaus eof her alzheimers she didn't understand what was going on with her sons. I think she would have been appalled if she had known that at least one is now a registered sex offender. She didn't deserve the terrible care another son gave her, as he slowly killed her by neglect. She didn't deserve having her son steal the money she worked so hard to save. I am glad she was in good hands during the last two years.
For awhile, while we lived next door to her, at night i would dream that her spirit would come to me and take my hand and say, "Come with me. Come meet my friends. Come dance with us." And together we would travel and she would joyously greet her first husband, Ignosio and they would dance. She was always so radiant and happy in these journey's we took together. I always loved that at these times there was no language barrier.
One night I asked her why she always came and got me to travel with her in our dreams and she said that she knew I would take good care of her and always make sure she came home. My reply was that she could stay and dance in the stars with Ignasio, that she didn't need to come back to Earth. But no, she told me, it wasn't time for her yet.
Last night I dreamed that same dream again, after so many years, and this morning she was gone.
RIP Josefina Perea Reyes.
This is the last foto of took of Abuelita. Somewhere in storage I do have a few pictures of her when she was young.
I edited this to add the photo we took at Abuelita's celebration of life. I wanted El Jay to have a picture with his dad's family. They insisted I be in the photo too. We used his little camera and I used photo-shop to improve it. I didn't crop the dog out, because he is part of the family too. From back left--me, Pat, Marco, Sabrina, Dante. Front row, El Jay Rey, and Tio Jose (Joe). Joe is El Jay's dad's middle biological brother. SUB was the youngest brother. In addition to his two bio brothers, he had two older half brothers. One from his dad's first marriage and one from Abuelita's first marriage. El Jay has two full Reyes cousins only, Marco and Sabrina (Sabrina is married to Dante and they are expecting their first baby in May.) El Jay also has one half cousin through Abuelita's oldest son and that cousin, Stevie, has a son who is 7 or 8 months younger than El Jay, named Nathan. Plus, several half cousins through SUBS Dad's oldest son--but we have never met them. I think it is sad that he has family on his dad's side that he will never know.
Monday, January 13, 2014
CT SCAN
The fourth and last of the imaging tests I needed to do is complete. This one went smoothly. I have terrible veins, though, and it took three pokes to finally get the IV started. The actual test took less time then doing the IV.
I meet with the surgeon and oncologist on Thursday. Hopefully, they will have the information they need to decide on a treatment plan and we will be able to get moving. I am ready, now, to do this thing.
On my way home from the UNM Cancer Center I stopped at the UNM Main campus. Spring semester begins soon and I still have much to do to be ready. I had several questions, but the advisor insisted we start with the issue that I did not complete Math 102 and I have an "I". That was a good place to start, however, she couldn't help me. She had no idea how this was to be handled. I told her what I had already been told, but I had forgotten the letter with this info. She insisted I had to go to the Math Advisement office and have it resolved there. I had told her I had cancer and I was hoping to get some answers about this semester, but she had no clue what to do. She did say there was no way I could take my final Strat Comm class by independent study. She said that until I resolved the Math issue we could not move forward with anything else.
At that moment, I made a decision to give up on college. I am so tired of school and graduation will not happen in May, unless.... people start helping me thru this experience. I told her that. Her answer was to have faith in God. That if I gave Him my tribulations, He would be there with the answers. I started to cry and as I walked out I told her she had answered my question about dropping out. I felt at that moment that the only answer was to give up. Taking a semester off is not the answer for me. I fear if I don't graduate this semester that I will never finish, even if all I have left are two classes.
I meet with the surgeon and oncologist on Thursday. Hopefully, they will have the information they need to decide on a treatment plan and we will be able to get moving. I am ready, now, to do this thing.
On my way home from the UNM Cancer Center I stopped at the UNM Main campus. Spring semester begins soon and I still have much to do to be ready. I had several questions, but the advisor insisted we start with the issue that I did not complete Math 102 and I have an "I". That was a good place to start, however, she couldn't help me. She had no idea how this was to be handled. I told her what I had already been told, but I had forgotten the letter with this info. She insisted I had to go to the Math Advisement office and have it resolved there. I had told her I had cancer and I was hoping to get some answers about this semester, but she had no clue what to do. She did say there was no way I could take my final Strat Comm class by independent study. She said that until I resolved the Math issue we could not move forward with anything else.
At that moment, I made a decision to give up on college. I am so tired of school and graduation will not happen in May, unless.... people start helping me thru this experience. I told her that. Her answer was to have faith in God. That if I gave Him my tribulations, He would be there with the answers. I started to cry and as I walked out I told her she had answered my question about dropping out. I felt at that moment that the only answer was to give up. Taking a semester off is not the answer for me. I fear if I don't graduate this semester that I will never finish, even if all I have left are two classes.
Foto taken at the old UNM Pump Station at Yale and Central.
Saturday, January 11, 2014
Grant Writing
I have trudged all over the UNM Main campus to ask questions to advisers and other people. In each instance I have been very transparent that I HAVE BREAST CANCER. And that if it is at all possible I still want to graduate in May. No one seems to know how to deal with me and for the most part I have been told to consider taking this semester off. I cannot do that. I can't. If I take a break for any reason, I feel I will never go back. I have worked hard and I am so tired of school and... I am ready to move on.
There seems to be a consensous about a few issues though.
1) there is no way I can make my final Strat Comm class work as an independent study class.
2) I should take the semester off
3) I have been given the business card for Agora twice (this is a suicide/depression hotline.) I have been told to go to the Women's Resource Center. I have been asked if I have been to the Student Health Center because they have counseling there. I am told, "You may want to call them, maybe they can help." I have cancer. I have a therapist already. I am not going to kill myself. But thank you anyways. It seems that everyone, so far, wants to avoid dealing with me.
I am working on writing a proposal for doing the Strat Comm Campaigns class as an independent study. It will mean putting together a group of people to help me complete each project. My focus will be on the Sisterhood of the Bras. This team will create branding, logos, and at least two campaigns to promote specific projects--like Jennifer the Traveling Bra. We will create a news letter, business cards, a brochure, perhaps. I will rebuild my websites and blogs. I am hoping the professor will decide to let me give this a try.
We will do a fund raiser to help me out financially during my treatment.Until I have accepted a treatment plan and we have begun the radiation or done the surgery and later started Chemo, I do not know if I will be able to continue to work at Joy Junction or if I will need to take time off. I will need a way to pay bills and take care of El Jay. Because my car was totaled, I imagine I will need to buy another car, which will mean a car payment and increased insurance. I figure El Jay and I can live on $2000 a month. I get $650 for child support. I need a way to bring in about $1400 a month even when I cannot work. I need to fill those gaps.
I will even write a grant and ask people and businesses to help support this project. Actually, I created a set of documents that might be asked for when writing a grant during a grant writing class two years ago, I am updating them now and I have one foundation I will send them to. I plan to request funding to help with the initial start up costs, a little overhead, printing, etc... the biggest cost is for money to replace my camera. The project is not possible without camera. I want to have this grant submitted by January 15th. As a group we will come up with other grants to apply for. I hope I get it, not just for the money, but because it will look good on future resumes that talk about this project.
Instead of people discouraging me, i need to be surrounded by positivity. I need people to say, "Yes, you can do this and we will help you. We believe in you. We believe in the Sisterhood. They say healing is easier if you have a good attitude. i believe that, but doubt creeps in. Plus, there have been so many road blocks, so many reasons not to believe in myself and to be discouraged. I want to heal and to do that I need to be surrounded by good things and people who believe in me.
Breast cancer isn't a little thing. It is a huge hurdle to get over. There will be many little things during this ordeal, with a few bigger ones, that I will look back on and smile as I remember how it was those things, and those people, that got me thru this time in my life.
There seems to be a consensous about a few issues though.
1) there is no way I can make my final Strat Comm class work as an independent study class.
2) I should take the semester off
3) I have been given the business card for Agora twice (this is a suicide/depression hotline.) I have been told to go to the Women's Resource Center. I have been asked if I have been to the Student Health Center because they have counseling there. I am told, "You may want to call them, maybe they can help." I have cancer. I have a therapist already. I am not going to kill myself. But thank you anyways. It seems that everyone, so far, wants to avoid dealing with me.
I am working on writing a proposal for doing the Strat Comm Campaigns class as an independent study. It will mean putting together a group of people to help me complete each project. My focus will be on the Sisterhood of the Bras. This team will create branding, logos, and at least two campaigns to promote specific projects--like Jennifer the Traveling Bra. We will create a news letter, business cards, a brochure, perhaps. I will rebuild my websites and blogs. I am hoping the professor will decide to let me give this a try.
We will do a fund raiser to help me out financially during my treatment.Until I have accepted a treatment plan and we have begun the radiation or done the surgery and later started Chemo, I do not know if I will be able to continue to work at Joy Junction or if I will need to take time off. I will need a way to pay bills and take care of El Jay. Because my car was totaled, I imagine I will need to buy another car, which will mean a car payment and increased insurance. I figure El Jay and I can live on $2000 a month. I get $650 for child support. I need a way to bring in about $1400 a month even when I cannot work. I need to fill those gaps.
I will even write a grant and ask people and businesses to help support this project. Actually, I created a set of documents that might be asked for when writing a grant during a grant writing class two years ago, I am updating them now and I have one foundation I will send them to. I plan to request funding to help with the initial start up costs, a little overhead, printing, etc... the biggest cost is for money to replace my camera. The project is not possible without camera. I want to have this grant submitted by January 15th. As a group we will come up with other grants to apply for. I hope I get it, not just for the money, but because it will look good on future resumes that talk about this project.
Instead of people discouraging me, i need to be surrounded by positivity. I need people to say, "Yes, you can do this and we will help you. We believe in you. We believe in the Sisterhood. They say healing is easier if you have a good attitude. i believe that, but doubt creeps in. Plus, there have been so many road blocks, so many reasons not to believe in myself and to be discouraged. I want to heal and to do that I need to be surrounded by good things and people who believe in me.
Breast cancer isn't a little thing. It is a huge hurdle to get over. There will be many little things during this ordeal, with a few bigger ones, that I will look back on and smile as I remember how it was those things, and those people, that got me thru this time in my life.
Please, believe in me.
Wednesday, January 8, 2014
MRI
Today I completed the 3rd test to determine how far the cancer has spread. I had an MRI.
It may be a week or two before I am able to replace my Azul Carito. My friend Manny gave me a ride.Once I got to the UNM Breast Cancer Center things began going down hill. I had gotten there early, because I was told I needed a blood draw before I do the CaT Scan next week. However, I didn't need a blood draw, because they could use the blood from the draw on Dec 26th. So, I went to the imaging desk to check-in. The lady said my UNMH Care had been canceled and my Centenial Care was still pending. Briefly, I had a jolt, thinking I would not have insurance coverage for the scan or any procedures until these wonderful changes being forced upon us by the government. The lady helping me showed little interest or compassion and asked for my co-pay. I have to say that that made me shake my head and wonder if anyone knows what is really happening. With the timing of my cancer, I feel like I will be a poster child for Obama-Care.
I was sitting there waiting. A few minutes after the time for my appointment the lady came over and told me that the MRI people were running about thirty minutes late. When I go to doctors appointments I always figure on extra time. However, I was already feeling frustrated. Finally, I was taken back to the changing area. I was given a gown and pants to change into. I tried to put on the pants, but they were too small. I had stripped down to just my panties when a male patient opened the curtain into my cubical. I looked up. He gasped and quickly closed the curtain. I shook my head and thought things like this are destined to happen to me. He was more frightened and shocked than I was, I am sure. When I told the imaging tech, her response was, "Yeah, these things happen." I think it will be one of my crazy Tina stories as I share this journey. I can laugh about it already.
When a breast MRI is done, you lay on your tummy on that narrow table/bed and your breast are put thru an opening and left hanging down. There is also an opening for your nose and mouth, so you can breathe. They place headphones over your ears to mask the sound of the machine. They try to make you as comfortable as possible, but total comfort is impossible. In my case, the earphones began slipping immediately--which was uncomfortable and did little if any good at blocking the sound. Plus, the face opening was not positioned right and my mouth was over the vinyl and that got slippery and wet, adding to my discomfort. I moved slightly at one point, which necessitated retaking that image.
I have been thru a lot since I discovered the lump. I have been emotional a lot. It was while laying there, face down during a few moments of inactivity that I felt something emotional in me snap and I started crying. I did not want to have to do these tests any more. I didn't want to deal with meeting with doctors, more tests, surgery, radiation, chem.... I didn't want to keep dealing with the car situation and I knew I had to and that this was just the beginning. And I was afraid and so tired of my life.
When we were done, the tech came in and said the male assistant would remove the IV line and she left. I told her that earphones had slipped and her responce was, "Yeah, that happens." The assistant removed the IV and told me I would need to wait til the dressing room was free and he too left. And that was it. Where as my other procedures have gone well and the staff was kind and compassionate, this group were just jerks.
It may be a week or two before I am able to replace my Azul Carito. My friend Manny gave me a ride.Once I got to the UNM Breast Cancer Center things began going down hill. I had gotten there early, because I was told I needed a blood draw before I do the CaT Scan next week. However, I didn't need a blood draw, because they could use the blood from the draw on Dec 26th. So, I went to the imaging desk to check-in. The lady said my UNMH Care had been canceled and my Centenial Care was still pending. Briefly, I had a jolt, thinking I would not have insurance coverage for the scan or any procedures until these wonderful changes being forced upon us by the government. The lady helping me showed little interest or compassion and asked for my co-pay. I have to say that that made me shake my head and wonder if anyone knows what is really happening. With the timing of my cancer, I feel like I will be a poster child for Obama-Care.
I was sitting there waiting. A few minutes after the time for my appointment the lady came over and told me that the MRI people were running about thirty minutes late. When I go to doctors appointments I always figure on extra time. However, I was already feeling frustrated. Finally, I was taken back to the changing area. I was given a gown and pants to change into. I tried to put on the pants, but they were too small. I had stripped down to just my panties when a male patient opened the curtain into my cubical. I looked up. He gasped and quickly closed the curtain. I shook my head and thought things like this are destined to happen to me. He was more frightened and shocked than I was, I am sure. When I told the imaging tech, her response was, "Yeah, these things happen." I think it will be one of my crazy Tina stories as I share this journey. I can laugh about it already.
When a breast MRI is done, you lay on your tummy on that narrow table/bed and your breast are put thru an opening and left hanging down. There is also an opening for your nose and mouth, so you can breathe. They place headphones over your ears to mask the sound of the machine. They try to make you as comfortable as possible, but total comfort is impossible. In my case, the earphones began slipping immediately--which was uncomfortable and did little if any good at blocking the sound. Plus, the face opening was not positioned right and my mouth was over the vinyl and that got slippery and wet, adding to my discomfort. I moved slightly at one point, which necessitated retaking that image.
I have been thru a lot since I discovered the lump. I have been emotional a lot. It was while laying there, face down during a few moments of inactivity that I felt something emotional in me snap and I started crying. I did not want to have to do these tests any more. I didn't want to deal with meeting with doctors, more tests, surgery, radiation, chem.... I didn't want to keep dealing with the car situation and I knew I had to and that this was just the beginning. And I was afraid and so tired of my life.
When we were done, the tech came in and said the male assistant would remove the IV line and she left. I told her that earphones had slipped and her responce was, "Yeah, that happens." The assistant removed the IV and told me I would need to wait til the dressing room was free and he too left. And that was it. Where as my other procedures have gone well and the staff was kind and compassionate, this group were just jerks.
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