Sometimes the best thing you can do for yourself when you are dealing with Cancer is remember to network. No matter how sick you are, make a friend in the medical community who has got your back. If you can't do this, ask the most personable member of your family to do it for you. Think of who might be likely to go to the mat for you if they had to? If you can't think of any person to ask, keep your eyes open, someone from the medical community will cross your path who fits the bill. It doesn't really matter if this person is a Doctor or a CNA, they just have to be intelligent and resourceful. For me that person was Kandie, the Referrals Specialist at my General Practitioner's office.
Oddly enough, I really did not know Kandie before my Ovarian Cancer diagnosis. I may have talked to her a few times on the phone when calling in for an appointment or asking a question. I know for sure that she was not a person who I remembered when I left the Doctor's Office.
Our relationship changed completely after June 3, 2012. I hope this blog lets her know just how much her help meant to me both then and now. I am not exaggerating when I say that I would not be alive had it not been for Kandie's help! To this day I can call her and she listens, makes suggestions, and follows through with a positive attitude that keeps me going.
Here is why Kandie was so important to me. You will find when you are sick that many medical people will hit you with a number of different suggestions, directives, and commands that you will have to sort through. You and your family have the job to decide what information to ignore, what to file away for later, and what to do now. Keep in mind, just because a doctor tells you that you must do something does not mean you have to - your job as a patient is to decide what you are comfortable doing.
When my journey started I had no less than three Oncologists, numerous nurses, a General Practitioner, and a Gynecologist. Everyone had an agenda, and everyone had a list of things for me to do. I was really not sure who to trust? So I decided to ask the medical professional I had the longest most trusted relationship with if they would manage my case and all the paperwork. I knew going in that this Doctor was not the person who everyone assumed would be managing all my treatments. I decided that it was most important for me was to feel as if I had control. At the risk of offending everyone, I asked my General Practitioner to manage my case the minute I was released from the hospital the first time in mid June. Normally this is the role of the Oncologist. Fortunately, to his credit he said he would handle my case and any referrals I needed from his office.
The first task for all of us was to decide how to handle my upcoming hysterectomy and tumor removal? My Oncologist was doing the surgery in four weeks. I was already so sick from chemo that I was terrified that if I was left home alone after surgery on a daily basis I might not make it. I was informed by my Oncologist that I would need no nursing care during my recovery from surgery. The insurance company also told me that I did not need a nurse. I had a nurse after my release from the hospital the first time (when all I had was chemo) and I was puzzled by the fact that I would not have one after surgery? My husband works, my family works, and no one has a medical background. I mentioned my fear of being without any nursing care to my GP. He was able to suggest a way that I could have nursing care at home through a Hospice Program for people who were not dying. He told me his office would look into referring me.
A day later, Kandie the office Referrals Specialist called me at home. She asked me a bunch of questions. First and foremost she wanted to know why she was referring me to hospice if I wasn't dying? I told her what the Doctor and I had discussed and she told me she would get back to me shortly. She called me back the next day and told me that she had spent most of the day investigating programs for me. She said she finally found one she thought would work for me and told me they would be calling me soon. She is such a wonderful person, she told me if I did not like them or if I needed anything else I should call her ( and she sincerely meant it!) Kandie even checked in with me later to see if I liked the nurse that was assigned to me?
As my treatment continued, Kandie researched and found me specialists who could help me at every step in my journey. If I was too sick to talk, she called my husband. She found me a Counselor in my neighborhood who is only one of a dozen or so in the country who has a specialty in patients who are chronically ill. She found me a world famous Oncologist to give me a second opinion, and a lymph edema treatment center that was at the hospital I was comfortable going to ( instead of the one my Oncologist likes to go to). These are all services my Oncologists office could have done but she took them on because she took the time to learn what worked for me. She is also always available for a hug or moral support if I need it. She amazes me because she treated me like she would have treated her own sister!
The long and short of it is that you need to make sure that you use a positive attitude and make some friends among the people who are there to help you. It may not be the person who is assigned the job. It may not even be the person who should logically have the job. Simply figure out who you trust and move forward. Don't worry about what anyone has to say.
Please remember this article does not contain medical advice, it is just a helpful technique that worked for me during my treatment. You may find you want to follow the traditional channels and that is perfectly fine. The idea is to take from this blog what helps you and not worry about the rest.
Friday, October 12, 2012
Thursday, October 11, 2012
Survivor's Blog- October 11, 2012 - Art as Therapy
I have had a truly awful week except for my students and classes! So I thought I would post some of my recent work to show you how art works as therapy for me. Art can lift your spirits and take you away from what is happening with your health. Art can also help you process your feelings about all this Cancer stuff.
I still do not have feeling in the ends of my fingers. I can use my whole hand, but nueropathy from Chemotherapy treatments has caused me to have fingers that feel vaguely like I am wearing oven mitts all day long. I figured out early on that creativity was a great way to divert my attention from my chemo treatments and from the pain that comes with Ovarian Cancer. If I was too sick to do the art myself, I spent my time enjoying the work of others. During my first stay in the hospital my niece, Courtney, stayed with me the whole time. She spent her days making beautiful jewelry for herself and some of the nurses. As a jewelry maker, I was actually able to become absorbed in teaching her new techniques even while I was hooked up to an IV pole.
Those of you who know me, know that my first artistic love is cooking. I actually teach cake decorating and my students have been a huge part of my recovery. They teach me new things every day about technique, artistic vision, and patience. I was at work the minute I felt well enough. I let their artwork inspire me. ( If you would like to see what I mean visit my other blog www.sweetcakesandsparklythings.blogspot.com ).
In the meantime, I started feeling well enough to do a bit of work on my own. I am not up to my precancer level of craftsmanship but, that is OK! The disability is actually forcing me to think outside the box and explore new mediums. This little cake topper is my entry for the South Carolina State Fair this week. I used Fondant, Gum Paste, Cocoa and Royal Icing- all of this is edible. I won't win any prizes at our fair with this ( the subject matter is too dark) but, I do have the satisfaction of having completed my first artwork post cancer. Plus I figured out how to sculpt beautifully realistic pumpkins and squash....
I still do not have feeling in the ends of my fingers. I can use my whole hand, but nueropathy from Chemotherapy treatments has caused me to have fingers that feel vaguely like I am wearing oven mitts all day long. I figured out early on that creativity was a great way to divert my attention from my chemo treatments and from the pain that comes with Ovarian Cancer. If I was too sick to do the art myself, I spent my time enjoying the work of others. During my first stay in the hospital my niece, Courtney, stayed with me the whole time. She spent her days making beautiful jewelry for herself and some of the nurses. As a jewelry maker, I was actually able to become absorbed in teaching her new techniques even while I was hooked up to an IV pole.
Those of you who know me, know that my first artistic love is cooking. I actually teach cake decorating and my students have been a huge part of my recovery. They teach me new things every day about technique, artistic vision, and patience. I was at work the minute I felt well enough. I let their artwork inspire me. ( If you would like to see what I mean visit my other blog www.sweetcakesandsparklythings.blogspot.com ).
In the meantime, I started feeling well enough to do a bit of work on my own. I am not up to my precancer level of craftsmanship but, that is OK! The disability is actually forcing me to think outside the box and explore new mediums. This little cake topper is my entry for the South Carolina State Fair this week. I used Fondant, Gum Paste, Cocoa and Royal Icing- all of this is edible. I won't win any prizes at our fair with this ( the subject matter is too dark) but, I do have the satisfaction of having completed my first artwork post cancer. Plus I figured out how to sculpt beautifully realistic pumpkins and squash....
Saturday, October 6, 2012
Survivor's Blog- October 6, 2012- Being grateful a simple way to stay positive...
Here is what I am grateful for today:
I went to Five Guys ( a wonderful burger joint here in Columbia) to pick up a couple of hamburger's for dinner. I had worked really hard today and just could not face making dinner!! When I walked in the door of the restaurant I smelled this wonderful smell-- fresh hot french fries!!!
As I was standing in line I realized that I had not REALLY smelled french fries for a year. Since June 3, 2011 I had to hold my breath to order food and have them deliver it outside or have Oscar pick it up. The smell of fries was nauseating. I find it ironic that I am a foodie and for the last year food is the most likely thing to send me running for the nearest toilet bowl to throw up in .
So today I am grateful that for once fries smelled just like they should- yummy! Which brings me to my topic for today. How do you stay positive when your life is no longer your own? How do you resist getting grouchy as hell when people are poking and prodding you constantly? Without sounding like Sally Sunshine, I would like to give you a simple tip that helped me.
Prior to my illness, I was reading " The Secret" by Rhonda Byrne. I loved the concept of the book, the idea that you could "attract" good things to your life. I read a section of the book every time I felt really sick or down, just to bring my spirits up. I am not sure that I ever believed that you could attract good things to you. I just used the book to help me adjust my attitude. One of the things mentioned in " The Secret" is the concept of being grateful. Prior to my illness I would try to be grateful for everything I had. Like most of us, I usually forgot to do so until I picked up the book again.
When I got sick I had my husband bring the book to my hospital room. I decided I would do as the book directed and consciously be grateful for something every morning. So every day I woke up in the hospital I would start my day with " I am grateful for____________". Some days I was just grateful for pain drugs, others for waking up ALIVE. Oddly enough, as I practised faking being grateful, I actually became really grateful and really cognizant of the things feeling blessed and grateful can do for you. Being grateful for the many blessings in my life allowed me to make it through all that time in the hospital.
So today I am grateful for French Fries. How about you?
I went to Five Guys ( a wonderful burger joint here in Columbia) to pick up a couple of hamburger's for dinner. I had worked really hard today and just could not face making dinner!! When I walked in the door of the restaurant I smelled this wonderful smell-- fresh hot french fries!!!
As I was standing in line I realized that I had not REALLY smelled french fries for a year. Since June 3, 2011 I had to hold my breath to order food and have them deliver it outside or have Oscar pick it up. The smell of fries was nauseating. I find it ironic that I am a foodie and for the last year food is the most likely thing to send me running for the nearest toilet bowl to throw up in .
So today I am grateful that for once fries smelled just like they should- yummy! Which brings me to my topic for today. How do you stay positive when your life is no longer your own? How do you resist getting grouchy as hell when people are poking and prodding you constantly? Without sounding like Sally Sunshine, I would like to give you a simple tip that helped me.
Prior to my illness, I was reading " The Secret" by Rhonda Byrne. I loved the concept of the book, the idea that you could "attract" good things to your life. I read a section of the book every time I felt really sick or down, just to bring my spirits up. I am not sure that I ever believed that you could attract good things to you. I just used the book to help me adjust my attitude. One of the things mentioned in " The Secret" is the concept of being grateful. Prior to my illness I would try to be grateful for everything I had. Like most of us, I usually forgot to do so until I picked up the book again.
So today I am grateful for French Fries. How about you?
Friday, October 5, 2012
Survivor's Blog- October 5, 2012
Dear Breast Cancer Foundation,
I love the marketing job you have done this month! There is breast cancer merchandise everywhere. Many people have let me know that they will be walking this weekend to benefit cancer. Every show on day time TV is having benefits to raise money for the Breast Cancer Fund. Even my local Publix Super Market is hawking T shirts to support the cause.
While I fully support finding a cure for cancer.I am not happy that one type of cancer gets an entire month of marketing and national support. I feel totally left out - where is Ovarian Cancer Month??
Did you know that according to Cancer Research UK there are over 200 types of Cancer out there in the world? People are not even aware of many of them. I consider myself a well read, inquisitive person and I honestly did not know you could get cancer of your ovaries until the day I woke up in the hospital with it. No one told me about the symptoms or what to look for. (Not even my doctor's but, that is a subject for another day!)
Wouldn't it be nice if we could take a chunk of the donations that are funding all this advertising and endless pink T shirts and inform people about the less glamorous cancers too. What if some of that money was dedicated to researching alternative treatments? What if we earmarked our donations so that they supported education and choices that would actually help patients decide how they are treated? What if our donations made it possible for us to go to the hospital and have someone really discuss our treatment options with us instead of handing us a stack of cancer booklets we are too sick to read?
Don't get me wrong I really appreciated getting any help at all when I was in the hospital! As an independent person, I did not go into this expecting anyone to offer to help me . The American Cancer Society helped me with a tank of gas to get to treatment, they also provided me with new cosmetics so I could keep my skin healthy while I went through treatment, and they gave me a wig to cover up my bald head. I think that all of those things are fantastic and I am grateful for them. Their help was wonderful and it added a little cheer to some otherwise dark and depressing days.
I just want to make it my goal in the future to do something more. So I have been thinking..how can I make this illness of mine count? How can I help other people like myself, whose backs are against the wall.. while they fight for their lives?
I have a couple of ideas ( which I will unveil if I get them off the ground). For now I would like to hear your thoughts.. what kind of things can I do.. to make this easier for the people that come after me?
I love the marketing job you have done this month! There is breast cancer merchandise everywhere. Many people have let me know that they will be walking this weekend to benefit cancer. Every show on day time TV is having benefits to raise money for the Breast Cancer Fund. Even my local Publix Super Market is hawking T shirts to support the cause.
While I fully support finding a cure for cancer.I am not happy that one type of cancer gets an entire month of marketing and national support. I feel totally left out - where is Ovarian Cancer Month??
Did you know that according to Cancer Research UK there are over 200 types of Cancer out there in the world? People are not even aware of many of them. I consider myself a well read, inquisitive person and I honestly did not know you could get cancer of your ovaries until the day I woke up in the hospital with it. No one told me about the symptoms or what to look for. (Not even my doctor's but, that is a subject for another day!)
Wouldn't it be nice if we could take a chunk of the donations that are funding all this advertising and endless pink T shirts and inform people about the less glamorous cancers too. What if some of that money was dedicated to researching alternative treatments? What if we earmarked our donations so that they supported education and choices that would actually help patients decide how they are treated? What if our donations made it possible for us to go to the hospital and have someone really discuss our treatment options with us instead of handing us a stack of cancer booklets we are too sick to read?
Don't get me wrong I really appreciated getting any help at all when I was in the hospital! As an independent person, I did not go into this expecting anyone to offer to help me . The American Cancer Society helped me with a tank of gas to get to treatment, they also provided me with new cosmetics so I could keep my skin healthy while I went through treatment, and they gave me a wig to cover up my bald head. I think that all of those things are fantastic and I am grateful for them. Their help was wonderful and it added a little cheer to some otherwise dark and depressing days.
I just want to make it my goal in the future to do something more. So I have been thinking..how can I make this illness of mine count? How can I help other people like myself, whose backs are against the wall.. while they fight for their lives?
I have a couple of ideas ( which I will unveil if I get them off the ground). For now I would like to hear your thoughts.. what kind of things can I do.. to make this easier for the people that come after me?
Thursday, October 4, 2012
About my battle with Ovarian Cancer.. Day 2
So, I already told you about how I landed in Lexington Medical Center on the night of June 3, 2012. The life changing stuff just keeps happening on June 4 ( and really has not stopped since!) Basically, I was moved to a room sometime after midnight on the night of June 3rd. They have no room for me in the Oncology ward so I ended up in with the Senior Citizens a floor away from the Oncology Ward. As soon as I reach the room, a CNA comes in and drops a computer print out on my bedside table. She says to me "this is what you are admitted for:Ascites". She does not explain a thing- just leaves me with a couple pages of paper. I tried to read them but, all I could glean from the pages was that I had a bunch of fluid built up in my gut that was actually starting to shut down my organs. The pages don't say a thing about my cancer- not one word!
I gave up trying to understand my diagnosis and decided to sleep. The shock of the whole thing has knocked me for a loop.Strangely enough, I am actually relieved to know what is wrong with me! I was sick for so long and I felt like I was the only one who knew that something was really wrong. I am not sure if the Doctor's ever thougth I had anything serious was going on until the day I was told I had cancer.
I can't remember if Oscar went home or what. He may have called my sister- I was really fading in and out and don't remember everything.
In a short time, I am out like a light. I remember nurses coming in and waking me up several times that first night. Honestly I was just relieved to have some pain medicine on board, I had been sick for so long it was really rare for me to be out of pain ever!
Sometime around 4 Am, they woke me up to check me over and I could not get back to sleep. I kept thinking " how am I going to call my family in the morning and tell them I have cancer". I was terrified to make the call home to my Aunt Sue & Uncle Dick in Santa Cruz. They are my closest family and had just lost my Cousin Mike to cancer in November of 2011. We all missed him so much! After all the grief they had already been through how was I going to call home and explain that I too had cancer?
I gave up trying to understand my diagnosis and decided to sleep. The shock of the whole thing has knocked me for a loop.Strangely enough, I am actually relieved to know what is wrong with me! I was sick for so long and I felt like I was the only one who knew that something was really wrong. I am not sure if the Doctor's ever thougth I had anything serious was going on until the day I was told I had cancer.
I can't remember if Oscar went home or what. He may have called my sister- I was really fading in and out and don't remember everything.
In a short time, I am out like a light. I remember nurses coming in and waking me up several times that first night. Honestly I was just relieved to have some pain medicine on board, I had been sick for so long it was really rare for me to be out of pain ever!
Sometime around 4 Am, they woke me up to check me over and I could not get back to sleep. I kept thinking " how am I going to call my family in the morning and tell them I have cancer". I was terrified to make the call home to my Aunt Sue & Uncle Dick in Santa Cruz. They are my closest family and had just lost my Cousin Mike to cancer in November of 2011. We all missed him so much! After all the grief they had already been through how was I going to call home and explain that I too had cancer?
Tuesday, October 2, 2012
Survivor's Blog- October 2, 2012- Too Pooped to Post!
Too pooped to post tonight!!
9 months post chemo, I am still tired and working my way back from all the damage the treatments and surgeries caused.
On the upside, life is returning to normal. I actually was able to take my jellies down and enter them in the South Carolina State Fair today. Pretty cool, since last year I missed the fair entirely even though I did enter it. Definitely hoping to win a prize!!!
9 months post chemo, I am still tired and working my way back from all the damage the treatments and surgeries caused.
On the upside, life is returning to normal. I actually was able to take my jellies down and enter them in the South Carolina State Fair today. Pretty cool, since last year I missed the fair entirely even though I did enter it. Definitely hoping to win a prize!!!
Monday, October 1, 2012
Survivors Blog October 1, 2012- Practical help with medical bill day.
If you have read my previous blog entries you will know that I am tackling the story of my Cancer Diagnosis from my perspective today and my perspective of past events. I will continue the story of my diagnosis and survival on another day when I feel more up to writing. I do feel a little better every day. Today, I am just a little wiped out from my busy weekend. Probably even more tired than usual because today I tackled the medical bills.
As a cancer survivor you will find that you could work on keeping up with medical bills, insurance denials, provider forms and various other mountains of paper every day and still never catch up completely. This week I had all the usual stuff plus an appeal to the SC Insurance Board to force my insurance company to pay for one of my pre chemotherapy tests. Plus there was also a threat of garnishment from the ambulance company because the insurance claims they paid them and the ambulance company swears no one paid them?
Basically, if you let it get to you - you would be stressed out and pissed off all the time!
So here are a few things I have learned about dealing with all these companies who want more money and time than you will be able to give them in this lifetime. These folks can't pay your bills for you but, they sure can help you keep track of everything. Please remember, I am not offering you legal information or financial advice- these are just some common sense tips that helped me.
Ask for help
I am an extremely independant person. My Aunt always says we come from "Independant Pioneer Stock" and she is right. I was raised around women who supported themselves, ran their own businesses and didn't ask anyone for anything. It was very humbling to ask for any help at all.
However, when you get hit with something as financially devastating as Cancer is - you need to explore your options ASAP. So here are a few people who are dedicated to help you unravel the billing questions:
A. As embarassing and humbling as this is- your first line of help is usually asking a family member or friend to advocate for you. They can take notes, keep a calendar of visits and intercede with the creditors until you feel well enough to do so.
B. If you have insurance,ask your insurance company to provide you with a personal "Case Worker" - this person is usually a Nurse who is paid by your insurance company to advocate for you on any number of issues.
C. If you are hospitalized- ask for a " Case Worker" or " Social Services" representative. Like the Case Worker from your insurance company, this person is paid to help you with a number of issues relating to your illness, including referring you to people who can help you decipher the bills.
D. The American Cancer Society is also helpful. They have a number of counselors on staff and many volunteers who have been where you are. You just need to ask what resources they have to help you.
E. I also found that the Cancer Center I go to has a person who specializes in financial services for patients. She actually helped me to find a "scholarship" that would pay for part of the infusion treatment I needed each time I took chemo. She also found me a fund that would pay for part of the chemo that was not covered by my insurance.
F. Volunteers- every cancer center has a number of volunteers who are there to help you. They cannot offer you financial advice or help with organization. They can however direct you to resources in the Cancer community that are designed to help.
Bottom line- don't let all of this stress you! Your job is to remain as focused on healing and survival as you can.
As a cancer survivor you will find that you could work on keeping up with medical bills, insurance denials, provider forms and various other mountains of paper every day and still never catch up completely. This week I had all the usual stuff plus an appeal to the SC Insurance Board to force my insurance company to pay for one of my pre chemotherapy tests. Plus there was also a threat of garnishment from the ambulance company because the insurance claims they paid them and the ambulance company swears no one paid them?
Basically, if you let it get to you - you would be stressed out and pissed off all the time!
So here are a few things I have learned about dealing with all these companies who want more money and time than you will be able to give them in this lifetime. These folks can't pay your bills for you but, they sure can help you keep track of everything. Please remember, I am not offering you legal information or financial advice- these are just some common sense tips that helped me.
Ask for help
I am an extremely independant person. My Aunt always says we come from "Independant Pioneer Stock" and she is right. I was raised around women who supported themselves, ran their own businesses and didn't ask anyone for anything. It was very humbling to ask for any help at all.
However, when you get hit with something as financially devastating as Cancer is - you need to explore your options ASAP. So here are a few people who are dedicated to help you unravel the billing questions:
A. As embarassing and humbling as this is- your first line of help is usually asking a family member or friend to advocate for you. They can take notes, keep a calendar of visits and intercede with the creditors until you feel well enough to do so.
B. If you have insurance,ask your insurance company to provide you with a personal "Case Worker" - this person is usually a Nurse who is paid by your insurance company to advocate for you on any number of issues.
C. If you are hospitalized- ask for a " Case Worker" or " Social Services" representative. Like the Case Worker from your insurance company, this person is paid to help you with a number of issues relating to your illness, including referring you to people who can help you decipher the bills.
D. The American Cancer Society is also helpful. They have a number of counselors on staff and many volunteers who have been where you are. You just need to ask what resources they have to help you.
E. I also found that the Cancer Center I go to has a person who specializes in financial services for patients. She actually helped me to find a "scholarship" that would pay for part of the infusion treatment I needed each time I took chemo. She also found me a fund that would pay for part of the chemo that was not covered by my insurance.
F. Volunteers- every cancer center has a number of volunteers who are there to help you. They cannot offer you financial advice or help with organization. They can however direct you to resources in the Cancer community that are designed to help.
Bottom line- don't let all of this stress you! Your job is to remain as focused on healing and survival as you can.
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