Bug Bites Post Cancer - Oct. 28, 2012 Day 2- Helpful Tip

OK- here is a helpful tip for anyone prone to Cellulitis caused by Lymph Edema:

 Have your doctor prescribe a standing antibiotics order and leave it on file at the 24 hour pharmacy. This way if you have a scratch or a bite that starts to look like cellulitis or MRSA you can take antibiotics until you can get in to see the doctor.

Don't do what I did and have your doctor order the prescription just in case and send it to a pharmacy that is closed Saturday Nights and Sunday!!!! (Brilliant ? )

I will have to see how I am in the morning, I suspect my error in judgement may cost me a trip to the Urgent Care or my doctor's office in the morning. I will let you all know....

Bug Bites Post Cancer- A Few Tips about Cellulitis & Lymph Edema

Here is one that my Oncologist completely "forgot" to inform me about: Lymph Edema and Cellulitis. Lymph Edema is a side effect of any type of surgery that removes lymph nodes from your body. The lymph system needs every lymph node you were born with to work properly. If you have lymph nodes removed, the lymphatic fluid under your skin cannot move through your body properly and toxins build up. I kept complaining of swollen ankles and feet when I was going through chemo and nobody at my treatment center clued me in to Lymph Edema. I found out I had it when I went for a second opinion with another Oncologist ( I just wanted to make sure my treatment was on track).

If you have had lymph nodes removed and you are swelling up, there is Physical Therapy you can get that will help you learn to manage this problem. I took several weeks of therapy where I learned to manage the issue. Please be aware before you ask to see a Physical Therapist for this issue that you find out what treatment will cost -- it is my understanding that so far NO insurance covers the bandages, casts and other things you will need for treatment. If you have my type of insurance- they will cover almost nothing at all!!!! Leaving me with an HUGE bill for treatment I could not live without. ( Negotiation is the way to handle this, talk to the billing department before you get treatment.)

What I cannot seem to get control of are some of the Lymph Edema side effects. On a limb that is affected with Lymph Edema you have to be VERY careful not to get cut, or poked, or bitten by any  bugs. I am training to be a Master Gardener so this is a tough one for me. I have found out that Fire Ants have no respect for bug repellent, or gloves, or long sleeves. When I get bitten the poison doesn't move up my limb and out like it should. I have to be very careful not to get an infection. I have learned that if the area gets red and hot, I need to head for Doctor and the antibiotics. The last infection I had covered my entire upper leg.

So of course, today I came home sprayed on some bug spray, put on my gloves and went out to winterize my Roses. Somehow despite being as careful as I could - I picked up several fire ants.
This photo is the result, 5 ant bites and my whole forearm is red, swollen, and gross. Hopefully, I got to the topical antibiotics, cortisone, and Benadryl in time...

Stay tuned to this blog to see what happens!

Survivor's Blog - October 26, 2012 The Power of a Great Example - Mike!

The past couple of weeks have been very dark for me. I have always tried to stay completely positive and up beat about this whole cancer thing (And I really do think I succeeded until the last couple of weeks). Personally, something has happened that feels like my foundation has been ripped out from under me. I am having a hard time getting myself to paddle in the right direction again.

To top it all off  I also found out that for some reason my cholesterol was too high to even be measured ( I think I probably am missing a body part related to processing cholesterol after all the surgeries). The doctor put me on a cholesterol drug that caused me to have a terrible physical reaction that put me back in severe pain for the past few days even after I stopped the drug.

I have been really angry and not too positive over all of this for a couple of weeks now (which is really unlike me). Today, I thought of my Cousin Mike and decided I should just wade through it and head toward the light. Mike has been my example through all of this cancer stuff. He was not only my cousin but one of my dearest friends. Mike was the person I called when I needed someone to tell me the truth. He could condense any situation down to the nuts and bolts because he had faced death and won ( several times) . He taught me how to live through Cancer with my head held high and my sense of joy and humor intact through his example. I never thought that a few months after he left us from cancer, I would be diagnosed with cancer too. I am now left with his memory and strength as my trail of bread crumbs through the dark and scary woods.

If I can only live up to Mike's example I will be the person I aspire to be through all this. Mike was seriously ill long before he had Cancer. He never made a big deal of it, in fact never mentioned it in public unless he had to. I truly believe many of his friends and acquaintances never did fully grasp his health situation because he had more energy and zest for life than anyone I have ever known.

Clearly I am unlike Mike, I cannot keep anything secret. I am not good at suffering in silence. My disease is so under diagnosed, underfunded, and misunderstood that  I feel I have to go as public as I can with my Cancer so that the women who come after me know that they are not alone. Maybe, in a few months I can use this blog to start to draw awareness to Ovarian Cancer. Who knows, maybe my survival can help someone else?

Eye Issues - some eyewear tips that would have helped me....

I am always puzzled by the things no one tells you when you go into cancer treatment. The American Cancer Society gives you a book with some helpful tips. However, it is a bit on the cheerful  side and does not elaborate on some of the things that happen to patients that are not so nice. A prime example of this is what chemo does to your vision. Here is what happened to my eyes, I hope it helps you if you go through this.

This past week I went in last week to get new glasses because, as many of you know you cannot wear your contact lenses during chemo treatment. I am several months past my last chemo treatment. I  waited to get glasses for a few months after treatment because chemo  physically changes the shape of your eyes.  I picked up my new glasses and I was really disappointed with them. The eye glass technician talked me into  "Transitions" lenses after I told her how sensitive my eyes are post cancer. I clearly told the technician I would be using them for indoor and outdoor wear.When I got the glasses back, they are not dark enough to protect my eyes when I am out side, it hurts to be in the sun. When I came back to the store and brought this to the attention of the Store Manager she said this is the case for many post chemo cancer patients. She told me that I must now wear Polarized sun glass lenses in a large set of frames order to be comfortable. Why couldn't someone have mentioned this to me up front?

Here is what I learned about eye care during my cancer journey:


Tip #1- If you are pre chemo and you wear contacts make sure you have a pair of glasses to wear when chemo starts. I went around the hospital half blind for weeks since I had no glasses to change into and could not get my contacts in.

Tip #2- Make sure you not only have eye glasses for inside but, prescription sunglasses for out side wear prior to your first treatment. My eyes were so painful I wore sunglasses inside a great deal of the time.

Tip # 3- Have a bottle of Sensitive Eye Care treatment for dry eyes hanging around the house for bad days.

Tip #4- Make sure to be treated post cancer by a doctor and eye glass store that are familiar with the needs of cancer patients post chemo or radiation treatment.

Tip #5- Be persistent. Those silly transitions glasses cost me almost $100.00 more than regular glasses and then I had to order a pair of sunglasses anyway. I made sure I spoke with the store manager and she credited the cost of the transitions lenses towards my new sun glasses. Why should I lose money because some one was not properly trained? 

Tip #6- Since I had to get polarized lenses,  I had my Doctor officially prescribe them so that I could submit the bill to my insurance (they are now medically necessary).

Survivor's Blog- October 15, 2012 Laughter IS the best medicine...

OK, so I am still having a rough stretch. Recovering from Ovarian Cancer is not fun. I need to do something to lift me up and make me happy. So I hit favorites on my browser and took myself to my favorite Cake Website "Cake Wrecks".

 ( or second favorite after my own www.sweetcakesandsparklythings.blogspot.com ).

My friend Kim A. turned me on to this site years ago and it still makes me laugh so hard I almost pee myself. I am going to link you to my all time favorite blog entry at Cake Wrecks, " Happy Falkersatherhood " .   http://www.cakewrecks.com/home/2009/5/4/happy-falker-satherhood.html

Make sure you read the story and watch the follow up video.

Some times you just have to fake it until you make it, and laughter always helps.

This is just a sample of what awaits you.....

Survivor's Blog- October 13, 2012 .. Think Positive.

It is days like today that make me wonder how in the world I am going to make it through this Cancer Recovery thing. No one tells you how sick you might be when you are completely off of chemotherapy. No one tells you that Nueropathy in your limbs and extremities is normal, and no one has any idea when it will wear off. Or that Chemo causes you to lose a good portion of your short term memory!

So it is days like today when I really have to focus on something positive and just get through it!! Today I used one of Colin Powell's thirteen rules :

"It can be done."

That is it, I just focused on getting through until the end of my day. Sometimes, the end of the day is the farthest you can look forward and that is OK.

Me, a few months ago!!

( If you want all 13 of General Colin Powell's rules check out his new book "It Worked for Me".

Survivor's Blog- October 12, 2012 Finding People to Help You...

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.

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....

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?

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?

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?

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!!!

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.