Survivor's Blog- April 30, 2013- A little support please???

As everyone who has cancer knows, this disease cannot be managed alone. I was out and about a tiny bit today, just trying to run errands. I must have looked really pitiful because, I had a number of people stop me to tell me I was going to be fine! I also had one woman stop me just to talk because she has been going through treatment for Ovarian Cancer for the better part of 8 years. I find it amazing what strangers will tell you just because you look bald!!! I will say that I do appreciate the support and the help. A big thank you to the nice young man at Publix who unloaded my groceries on to the conveyer at the register, bagged them, and helped me get them all in the car!!! I had a hard time just making it up my stairs today-- so every little bit of kindness helped.

As Ovarian Cancer patients we also need another type of support.. physical support. Ever since they took out the tumor my stomach muscles have not been very strong. Normally, I would be at the gym working to get them tighter but, I am still in treatment and most days I am just to sick to do much.

I found a really simple solution to my puffy tummy - maternity tank tops. They have just enough support to help you feel like your gut is not crawling over the top of your jeans, without being so tight as to cause any pain. Maternity tanks are also longer that regular tanks so you have extra support if you have that big old hysterectomy scar hanging over your belt. If I could I would just wear Spanx but, the tummy control they have is actually physically painful while I am on chemo. The maternity tanks are the only thing I have found that I can wear comfortably.

The cool thing is we have a Ross store close to the house where I can pick up the maternity tanks for about $5.00 each. So this purchase is actually a "cheap thrill" too. ( See my other blog for coupon and shopping tips.)

Survivor's Blog April 28, 2013- How I chose to deal with my diagnosis and why...

It is almost 1 Am and I am still awake due to some lingering pain from chemo. Since I cannot sleep, and it has been a really tough week, I wanted to talk a bit about how I navigated my way to survivor . It is a long story but, I will relate here how I chose to deal with my diagnosis and why. I am certainly not implying that you have to follow my lead. I am just pointing out that it is your responsibility as a patient to decide how you are going to react to this diagnosis. Deciding how you will deal with Cancer keeps you from becoming a Cancer Victim, and allows you to become master of your own destiny.

I always say I came into the cancer game backwards, as I have most things in life. I never went to the doctor and had them say something like " Oh you have a lump.. lets send you off to find out what that is ? "  Only to find out later after some testing, that the lump they found was cancer. Instead, I was the patient that just kept getting sicker and sicker, and every time I went to the Doctor I was handed a different diagnosis and treatment. Every treatment I tried seemed to have the net result of making me sicker! I know my primary care Doctor,  Sean Fuller, believed I was sick. Despite his efforts to get me into the hands of a specialist who could figure out what the problem was.. no one ever figured out that I had cancer.

So in June of 2011, I landed in the emergency room with pain so strong I screamed for what seemed like the whole drive to the ER. When my husband finally got me in the building I barely got through the check in process. I spent the few minutes before they actually could see me in the restroom getting sick. During the check in process  they took a quick blood test and before I even got in to see the doctor they were taking my illness very seriously. Before I knew it the ER doctor was in front of me telling me that I was headed for a chest Xray because my blood work looked like was having a pulmonary embolism. Fortunately I did not have an embolism but, when the doctor looked at that simple Xray and surveyed the very bottom portion of it he could see a tumor. About 30 minutes after arriving at the ER the doctor came in and told me I had cancer.

I was immediately admitted to Lexington Hospital. Since they had no beds in Oncology, I ended up in the geriatrics ward. By the time I woke up in the morning - I had 3 oncologists assigned to me plus a bunch of residents monitoring me as well. Even though they could not tell me what kind of cancer I had, I knew it was deadly serious. I have always been a  realist. Who gets 3 oncologists???

I realized as soon as I woke up that first morning, that I had to decide how the heck I was going to navigate all of this? I  instinctively knew that how I chose to deal with this diagnosis and hospital  stay was going to impact the rest of my life. I decided then and there that I was going to be as positive as possible. The decision to be as cheerful as I could muster through this whole thing is partly due to my basically optimistic personality. The other half of  my decision actually came from the patient in the next room- who I could hear giving the nurses a really hard time every time they had contact with him. I would then see them come in my room with grim faces and dejected attitudes. I determined right there if I was not cheerful, I would fake it until I was cheerful... if for no other reason than to have the nurses take the very best care of me that they could. Oddly enough I found that " fake it until you make it" actually really worked. The more I tried to stay as positive as I could, the better I felt. the better I felt emotionally, the more sure I was that I would survive and thrive regardless of what the doctors told me.

I have had a very close family member tell me they thought I was in denial during my first bout with cancer. I can understand exactly why they thought I was in denial. Who in their right mind is cheerful and positive when they are given a Stage 4 cancer diagnosis? I can tell you I was cheerful and it was real. This does not mean that I loved being hooked to an IV pole and treated with chemo. Oddly enough,  as treatment progressed something strange happened.. I became really happy. And this really happy feeling was the happiest and most content I had ever been in my life.

You may wonder how the heck happiness is possible in the midst of sickness and chaos? I will tell you that a devastating illness stops your daily life completely and gives you time to think. Cancer also distills your life down to the simple things that matter: family, friends, home,  and faith. I will tell you that prior to my illness I was always very insecure about where I stood in life. I compared my life to others and I never measured up in my own eyes. I was very self absorbed and constantly striving and pushing my way through life. Cancer slowed me down. During those few weeks in the hospital, it immediately became apparent to me that I was deeply loved and valued by my family, my friends, and even my co workers. I was lucky enough to have people in my life who would go to the wall for me if need be. For the first time in my life, I was absolutely secure about my place in the world. Cancer stripped away the need to compare myself to others. I no longer find myself lacking! Through all this the Cancer and the revelations it brought with it allowed me to be truly joyful for the first time in my life.

So despite this new diagnosis of more cancer, I am still a pretty happy person.  Cancer may not be fun, but it is my path. I must walk down that path with as much assurance and grace as I can muster. After all, my greatest goal since this started has become the desire to help those women whose footsteps  follow mine down the cancer path.  So next week if you see me smiling and joking while I am in chemo, be assured the smile is not just due to all the great pain drugs!!!!

Chemo January 2012

Survivor's Blog- April 27, 2013 Surviving Flushing and Flashing... either way I am hot!!!!!

I am starting this blog entry at 2:30 am on Saturday the 27th. Once again, I woke up from a dead sleep with my pillow soaked in sweat!!Of course, every other part of my body is freezing!!!

My head is so hot... I am not sure whether I am flushing from chemo allergies or flashing from menopause? According to my chemo nurse, I should know if I am flashing or flushing because, I can be treated for flushing. I can't tell what I am doing! All I know is my  head is hot. I am pretty sure only my pillow knows whether I am flashing or flushing ( and trust me it's not talking!).

Of course, if it were all menopause and if I were a normal person I could have hormone treatment to help all this. As an ovarian cancer patient, I cannot have any hormones to help this process along.

Anyway, since this has been happening since 2011, I was forced to find ways to cool myself down.  The best one I use at night is a cooling spray I keep next to my bed. I also have a smaller spray bottle in my purse for emergencies. I first tried a cooling spray manufactured by Avon for sore tired feet.. I loved it. However, it was not inexpensive. When I looked at the list of ingredients I realized I could make it for pennies at home. Here is the recipe I came up with:

Tara's Cooling Spray

2 Cups distilled or filtered water                                         

Lavender is calming and cooling!

5 drops peppermint essential oil

4 drops lavender essential oil

Put all the ingredients in a clean spray bottle and shake it to incorporate the ingredients. I like to bottle this in the small spray/mister you get in the travel section at Walgreen's. The spray can be stored in the fridge or next to your bed as long as it is out of the sunlight.

*** Before you spray it all over yourself , test the spray on a tiny area of skin to make sure you are not allergic to the essential oils.


***** If you are on chemo as you try this spray- make sure the smell does not bother you. If it is bothersome you can dilute the mixture with water until it is not offensive to you and it will still help cool you down.

Survivor's Blog April 26, 2013 - The Blog is Catching On!!!

I am finally ending a tough week with chemo and headed into a few days of calm before the next treatment. I am happy to report that Scrambled Eggs is finally getting some notice. I did a post on PSI bands a couple of weeks ago and now they have posted my blog to their face book page with a wonderful note of encouragement! I also found out that my blog may be featured on a WIS story about dealing with grief. Hopefully, word will get out there and some more cancer survivors will join me in posting positive helpful thoughts and advice to the Internet.

Besides, someone else has to see the humor in having to resort to wearing pajama jeans and slippers to work!!! Look for more posts in the next few days with helpful hints and positive ideas. I start a new chemo drug on May 1, 2013 -- I am sure it will bring a wealth of new tips and tricks.

PSI Bands .. a life saver!

Survivor's Blog April 23, 2013- Look Good Feel Better a program for patients.

Just wanted to let everyone know about a cancer program that really helped me out. " Look Good Feel Better" offers classes and free personal care products to cancer patients during their treatment. This is a wonderful thing because, we cannot just wear any make up or cosmetics while we are in treatment. We have to be careful about keeping things sterile. Something as simple as mascara can cause a cancer patient to acquire an infection.

They also offer tips on how to cope with things like hair loss, eyebrow loss, and other changes in your appearance during cancer treatment.

So if you know a patient with cancer who needs a pick me up, or if you would like to help the cause check out their website:

http://lookgoodfeelbetter.org/

Survivor's Blog April 21, 2013- Never believe everything they tell you.....

Never believe everything they tell you, or as I read on a bumper sticker yesterday, " the more you disapprove, the more fun it is for me!" As many of you may have noticed, I have not had the best week ever. Despite my affirmations, and attempt at a very positive attitude, this week has taken its toll on me. For some reason my reaction to chemo also triggered an emotional storm that caused me some very negative thoughts along with a very typical allergic reaction.

So I had to stop and remember principles that have gotten me through this two year cancer process. I am hoping some of these principles might help you in your journey:

1. As a patient, you have the right to ask as many questions as you need to understand your condition. No matter who it bothers, or whom you drive crazy with phone calls  .. you have a right to understand what is happening ( or what will happen) to you regardless of whom it makes uncomfortable.

2. You have the right to say no! Ultimately, cancer treatment is designed to help you live a longer fuller life. If the treatment starts to cause you harm, or you feel uncomfortable it is your job to say no! Seek alternatives. Ultimately, your doctors and nurses are there to help you through this process, not make your health care decisions for you.

3. You have the right to a second opinion or as many opinions as you need. Your doctor may be in charge of your care but, he will not be offended if you seek the counsel of another doctor. Last time I sought a second opinion I did do the polite thing and inform my doctor of what I was doing and why but, regardless of what he ultimately thought, I went and talked to another oncologist.

This week while making this decision, I have sought the counsel of my General Practitioner and the Training nurse at SCOA. Before I make my final decision, I am going to speak to my counselor as well. When I am fully informed, I will make my decision prior to restarting chemo on May 1.

4. If family or friends are offended or worried about my decisions as a patient .. so be it!! I have been wrestling with the tough decision to continue with treatment or not. I need to decide whether to start a new type of chemotherapy that may have devastating side effects for an artist like myself or not.  Part of the problem with deciding whether to follow my doctor's advice has been how my family will feel if I say no to this treatment, when my doctor is saying it is my next best chance at a cure? Is my quality of life more important than the ultimate length of my life? I am still struggling with this decision. One thing I do know in my bones is that the decision is mine.. if it upsets folks so be it!!!


Ultimately, I need to remember that the choices lie with me not my family or my health care team.

Survivor's Blog April 16, 2013- Update and an ovarian cancer web site with a more positive spin..

Well, it has been another tough day here at Cancer Central! I went this morning to SCOA and found out that because of the reaction I had last week, my white count had dropped to 500. This probably explains why I have felt so crummy the last few days. I also was told that I have to go on a new chemo regimen , which will effectively be restarting chemo treatments. This means that instead of being done with treatment, I have four more chemos to go before I even get a PET scan.  As you can imagine, I am not too happy about any of this! However, when I get my head wrapped around it I will face it as positively as I can ( I am only human, I suppose I am allowed a momentary pity party!)

I promised I would not make this blog about me, so I will leave you all with a web site I really love. Ovations for the Cure of Ovarian Cancer and The Whisper Network,  is the most positive Ovarian Cancer web site I have found. They have a lovely outreach program, "the princess bead and bracelet".. if you are an ovarian cancer patient they will send you a beautiful bracelet to  cheer you and inspire you during treatment. Check them out at :

http://ovationsforthecure.org/programs/programs_princess.php

Princess Bracelet from the Whisper Network.

Survivor's Blog April 15, 2013- Chemo Update and tip for removing all that sticky black adhesive without removing your skin

Today I am still down from the chemo treatment last week. Seems like I do fairly well on the first three or four days after chemo as long as I am on IV fluids- the minute they take them away I have a couple of bad days. And believe me I am trying to get as much fluids and veggies down as I can stand. I am sure I will be feeling much better tomorrow. For today, I am tucked up in my bed with a big kitty on one side of me and a happy Labrador on the other.

Since I am not feeling as well today I thought I would give you a simple tip for coping with a problem that comes along with chemo: sticky adhesive all over your skin from treatment.

Remember, I am not a doctor, I cannot give medical advice, this is just what works for me!

 I have tried all sorts of methods ( baby oil, Vaseline, etc. ) to get this gook off my skin without causing irritation and a secondary allergic reaction. Here is the simplest, easiest method I have found:

1. Get out a cotton ball and some non acetone nail polish remover.

2. Soak the cotton ball in the remover and clean off the gunky area. The worst adhesive should lift right off.  ( Test a small area first to make sure you are not allergic to the polish remover).

3. Do not use this on any open wounds or open areas!!!!

4. Follow up the nail polish remover with a clean cotton ball  and plain water- make sure and rinse the area several times so that no nail polish remover is left on  your skin ( it can be irritating).

Adhesive gunk all over my neck &chest!!

No more adhesive gunk---yahoo!!!

Survivor's Blog April 14, 2013- I need to stop and say Thank You and spread some gratitude around.....

The past few weeks have been tough. I have had allergic reactions to my last two chemo treatments and they have made me sicker than I am used to being. If I had not had such wonderful friends and family I don't know how we would have made it through this crazy time. For now, I would just like to say how grateful I am that all of you are in our lives.

If I fail to mention your name here it is just because I am sick and forgetful, so many people have helped me since June 2011 it would be impossible to list them all.

First and foremost, I would like to thank my husband, Oscar, for putting up with me. He has cleaned house, cooked dinners, picked up prescriptions, and left work to come get me when I was too sick to drive myself home from treatment. We have had no vacations, and no time off since this all started. I know he did not sign on to be a full time nurse!!

Secondly, I would like to let my sister Erin know how grateful I am that she has come down and given up her time to be my chemo advocate. She has spent hours and hours in a very uncomfortable chair watching the nurses pump chemo into me. I am not sure how she stands it, especially since I become so loopy during the treatments.  I just want her to know how much I appreciate it.

 I would also like to thank Thomas and Courtney for making it possible for Erin to come down and care for me instead of them for a few days!!

I also owe a big debt to my employer Claude B, at Michael's and Kim A. who have kept me in a job during this whole cancer thing. The staff at Michael's has bent over backwards to make sure I am able to teach. And I owe a great amount to Kim A. who taught my classes for months instead of encouraging Michael's to hire someone else in my place. I would also like to thank the staff at OC Tech for allowing me to teach there as well during my illness.

And a big thank you to Oscar's co workers, our friends and  our neighbors who have helped out numerous times and never complained once!!

(And Carol, thank you for the best PJ's and the Kindle which is keeping me occupied on dark days. )

 

Survivors blog April 13,2013-Do something to brighten someone elses day...

I spent the better part of this past week  to an IV at the cancer treatment center. The staff here is wonderful, they go out of their way to be cheerful and helpful no matter what you throw at them.  Despite all their help, it is still hard to sit in room full  patients and be cheerful all the time. I look at  my cancer diagnosis as blessing . I was sick for so long that I was actually relieved to know what was wrong with me and be given a plan for treating it.  I am sure that my relief over the diagnosis actually threw my doctors at first.

 I have also noted that many of the patients next to me have had a much harder time processing their illness. So I decided to bring long a little cheer with me to treatment this week. While I was working at Michael's last week I used my discount  and picked up enough  bandannas for everyone in the treatment room. I then broke out  my plant gel and tulle bags and Erin helped fill and tie them up. That way during  treatment I could get up and hand a cooling scarf to everyone.

Turns out when Erin and I gave out the scarves it seemed to cheer everyone up  bit. I even had someone ask me to show them how to tie a silk scarf into a rose style head wrap like I was wearing that day. So I even spent a few minutes giving a scarf tying lesson.

Turns out the day that was brightened most was my own!!!

 ***Of course, I owe my friend and cancer mentor, Rebecca for teaching me how to make the scarves.

April 12, 2013- Simple Billing Advice

I would like to preface this post by saying that I am not a financial advisor,  please check with your creditors before you decide to use these tips to make sure they will not cause you to go into collections or have any other negative problems.

These are just simple tips I use to keep us afloat while I am in cancer treatment.

I did find out along my two year journey with Ovarian Cancer that there are a few things you should do to keep a handle on your finances when you are facing an uncertain length of time in medical treatment.

My tips for dealing with the massive and numerous bills that come with a cancer diagnosis:

Don't Pay any bill they send you the first time you receive it.

This is a tough one, I was always told to pay my bills promptly and in full. However, this is a case where if you do pay the bill promptly you may be sorry later.

Here is how I handle a new bill:

1. I check it first to see if it is actually a bill-
You are going to receive a ton of things that look like bills that are not bills. They could be insurance paperwork or a notification saying that the insurance has been filed for. Or they could be duplicate bills for the exact same service and procedure.

2. If it is actually a  bill- check to see if the insurance has paid their portion yet. If not, pay a small amount and call and ask the creditor for a payment plan. Once the insurance has paid, keep paying small amounts until you are sure they have paid in full. At this point you can stay on the payment plan or pay the whole thing off depending on what works for you. Otherwise, you may pay something that the insurance is supposed to pay( and that money will be lost to you forever).

3. If you have multiple bills from one creditor-  be proactive and ask if you can combine all your accounts and make payments. This way you can make sure the insurance pays on everything you are supposed to before you pay anything off.


Check and Double Check each bill:

 Make sure the bill is for the service you actually received. In my experience about 25 % of the bills I received were either duplications or had something incorrect on them. If you are unsure about something call the creditor or your insurance case worker and have them look in to it.

In the case of large procedures or surgeries you have to be especially vigilant- you may receive bills from several different entities for the same procedure. You are obligated to pay for the procedure but, I think they are hoping you will pay the multiple bills instead of just paying for the one procedure. Call and aks what your obligations are.

Get Help:

If you are overwhelmed or unable to pay the bills that are coming in get yourself some help. This does not mean borrow the money or sell the house. The help I am talking about can come from several sources, you want to make yourself a support team that can help you get through this:

A. Find a social worker- hospitals and most cancer centers have social workers on staff who specialize in helping you manage your care. They can help with filing disability if you need it, help with finding grants or programs that may help you, and they can help you navigate your insurance or medicare. All of these services are usually free. If not the American Cancer Society has folks that can also help  you with this aspect.

B. If you are too sick to deal with this at all, enlist someone to be in charge of your financial stuff. This does not mean give them power of attorney, it means having someone assist you so that you can do this together until you are able to handle your affairs again.

C. Make friends with the person at your cancer treatment place who handles the billing,  often these people are the ones who know about all the programs and assistance that is available to you.

Be Proactive

I know bills suck!! And medical bills are the worst because they are usually huge and incomprehensible. Take the process slowly and don't let it worry you or add stress to your life.
At this point healing is what you need to be doing, if you cannot pay, you cannot pay! Don't let debt make you sicker.

If you cannot pay something let the creditors know , sometimes they can " assign your bills" meaning write a portion of it off completely. Other times , they can postpone something until you are able to deal with it.

Keep in mind the creditors want you to stay solvent so that you can pay them- if you go under or declare bankrupcy or become insolvent they will get nothing. So it is in their best interests to help you, sometimes you have to point this out and then they will help you.

It never hurts to ask- and sometimes just asking for assistance yields huge results!!!

Negotiate

No one will admit this but, since the crash of 2008  everything is negotiable!!!

Polite persistent negotiation can yield huge results, I personally saved thousands of dollars by just asking to negotiate my bills.

And just like other negotiations you can negotiate up front if need be (before you do a procedure) or when you get the bill.

Survivors Blog April 11, 2013 - Bring an advocate with you!!

Once again I am strapped to an IV pole for fluids post chemo.  I was put on a new chemo yesterday and they drugged me pretty heavily to get it running at all, so I was asleep during most of my appointment. Then when they tried to run the second chemo, Cisplatinum, I had an allergic reaction which caused me to be the center of attention for a bit. The wonderful staff there got it all under control  pretty quickly. After yesterday, I thought I would give you a tip for maximizing your care.


Bring an advocate with you whenever you have an important appointment. You could also record your appointment on your phone if you are in  a pinch but, an advocate is better for a couple of reasons:

1. Two heads are better than one, sometimes your advocate will come up with questions you would never have thought of for the doctor.

2. If you are really to ill to make any sense or absorb what a medical professional is telling you , you must have someone prepared to ask the questions you need asked and to record the answers.

As for choosing an advocate, you must do some homework. I choose my sister Erin, because she has a steel trap mind, and she is not scared or worried by anything medical that is going on around her while she and I speak to the doctor. Most folks would choose their spouse but, in my case my wonderful husband has a really hard time coping with me hooked up to devices, or bleeding, or having an allergic reaction. So I have Oscar be my super support system at home and my sister be my advocate with the doctor stuff. If my sister is unavailable because she lives in another state, my backup advocates are generally Lauren or Eric, our neighbors.

You do also have a good second choice or auxiliary for an advocate if you have cancer. Every cancer center has a nurse navigator who is happy to help you keep track of all of the paperwork, help you formulate questions, and in my case explain all the medical jargon to my husband. My nurse navigators have been life saving helpers.  Eileen B. at my insurance company has always gone above and beyond to get me answers and assistance. Julie D. at SCOA has also been a huge help since she started as my new nurse navigator-- she even came down and visited today.

Now an advocate does not let you off the hook, you do make your own decisions which is why you have choose an advocate carefully. I also always have a note book on hand and a list of questions for my doctor, this way I get every bit of information I need to make informed decisions about my care.

Without Erin's help I would not  be teaching.

The best thing my doctor ever did for me!!!!

Hey Everybody,

If you know in my real life -- you know that I am hooked up to an IV pole today getting chemo. So for those of you with Ovarian Cancer I thought I would write a little bit about how a positive attitude and a life saving lecture from my doctor have kept me going for the past couple of years.

When I was hospitalized in 2011, I was awakened early in my first morning ( and  I mean EARLY) by the way too cheerful face of Dr. Terry Smith, who announced that he was one of my oncologists until they figured out what kind of cancer I had. Having an actual Oncologist was a bit scary but, I hit the internet and found out as much as I could about my doctor and learned pretty quickly that I was in good hands.

A few days later  in the hospital, Dr. Smith once again came into my room at some ungodly early hour and announced that he finally knew what kind of cancer I had: Ovarian Cancer Stage 4. He then sat down on my bed and took a look at my laptop sitting on the tray table next to me and he said a few words I will never forget, " do not research your cancer, don't look it up, don't ask anyone on the internet about it!!".

 I was floored, I am a logical kind of girl who likes to have facts and figures at hand. I have always had a positive attitude but, I always figured that the best part of succeeding in anything comes with research and preparation. Turns out Dr. Smith was right, he got all the tumor and I had a full year of good health before some minor glitches caused me to be in chemo again. Turns out positive thinking plays a huge roll in cancer survival..

If you don't believe me check out www.cancer.im  a website designed for cancer patients based on a recent European study that found that one of the biggest predictors of cancer survival is "quality of life". In other words if you are happy and stay positive.. you will live longer. I kind of suspect that holds true no matter what challenges you face in life!

*** If you are intersted in reading more about the study and cancer.im check out their free kindle book on Amazon.com, " The Cancer Patient User Manual" .

Survivor's Blog April 9 , 2013.. Chemo made my eyebrows look like Andy Rooney's, how do I fix them?

OK so one of the weirdest things that happened to me during and after my first bout with Cancer and chemotherapy was my eyebrows. Pre cancer I had the kind of eyebrows that every girl wants. My eyebrows were slightly darker than my natural hair color (strawberry blonde)  and had a nice shape to them. I never had to pluck or use a pencil to shade them in any way. During the first few weeks of chemo in 2011, the hair on my head all fell out. The next month out came my eyebrows, eyelashes, and everything else. As I finally worked my way back to health in 2012, my eyebrows started to grow back in.

When my eyebrows returned post cancer they were like something out of a horror movie!!! The first thing  I noticed as they were growing back in was the color.. a very light blond. Nothing wrong with light blond, except that my hair seemed to be coming back dark brunette.  At first, as my eyebrows slowly came back they looked just like my old brows except for the color. A few days later I noticed that they were just a little bit longer than my old brows, so I bought one of those eye brow and lash brushes with a colored brow pencil and some clear eye brow gel and started " shaping" my brows as I did my makeup. After about a week of shaping my brows I noticed that the hair just kept getting bushier. Every day the hair got a little longer and coarser it started sticking straight out. I was beginning to channel a very unhappy porcupine. And oddly enough, since I saw those crazy brows every time I passed by a mirror they started to bring me down. No amount of gel or shaping could do a thing with the hair that was coming back in. I was starting to look like Andy Rooney!!!

One day after a particularly tough brow and make up session I realized I had to take more drastic measures. So I called my local salon and asked what they would recommend. The first idea was a brow wax and a trim. Like all lymph edema and cancer patients, I had to nix that one since I have no immune system any more waxing could cause a nasty infection. So the salon owner suggested threading and a trim. I also had to nix that ( once again even the smallest injury can cause an infection). This left me with the third and final option a professional trim .. and gulp it would cost $30.00! I could not bring myself to pay $30.00 to have my brows trimmed especially since they seemed to be growing at such an alarming rate. There just had to be another solution.

I did a bit more research and found that you could buy a simple eyebrow trimmer at the drugstore for between $10 and $20.00. The first one I bought did not have a specific gadget for eyebrows, I followed the directions and the results looked like I was back in chemo.. too short. So I went back to the store and bought another device, the "Finishing Touch". This trimmer allows you to pick a trimmer guide in several different lengths, plus it has a light. In minutes I was able to figure it all out and use it to make my eyebrows look like those of a normal human and not a pissed off porcupine or fuzzy caterpillar.

Survivors Blog April 8, 2013 - Too tired to post ..

Today, I have a bunch of prewritten blog entries to choose from for posting. I am just too tired to make the whole thing work though. So instead I am just going to ask you all for positive thoughts and wishes for this Wednesday. I am starting a new type of chemo and I am a bit nervous about the whole thing. As always, I know I will be healthy and fine and the end of all of this. Days like today are a bit tough because, my only option is to stop and rest!!

So I am going to go enjoy another nap with my puppy and kitty. I  hope this day finds you happy and healthy. Go out and do something exciting because you never know when the time will come when you can't do exciting things anymore....

One member of my in home support crew.... Coaly!!!

Survivor's Blog April 7, 2013.. Setting up your home environment to get through this Cancer stuff!

I am a person who naturally likes to be positive and optimistic. I live my life that way. I am also very, very independent ( some might say wickedly stubborn) and I like to do things my way. However, I find that my way has had to change to accommodate days when I cannot leave my bed and days when I cannot be more than a few feet from a bathroom.  When you are diagnosed with something as life changing as cancer, you have to expect the best and prepare for the worst.

One of the things I recently did was have my office in the front room moved and reorganized. Since I have worked at home for years, my home office was tailored to my needs and it is in the room farthest away from our bedroom. I cannot sit in my office chair for long periods anymore, so I picked up a second laptop super cheap on eBay and have it in my room. Now my bedroom has a shelf that is dedicated to my laptop and office items. This makes it easy for me to work from my bed on days when I cannot get up.

I also organized my extra shelf to house all my medicines that I might need when I don't feel well. This keeps me from having to use my energy running to collect everything I need when I get sick from the pantry or the bathroom.

Finally, I organized my kitchen so that I have a bunch of easy to prepare options at hand. I have individual servings of things frozen so that if I need a meal and do not have the energy to cook it  I can just grab it out of the freezer.

 

I know this may sound silly but, when you are dealing with an illness it is the little things that sometimes make the biggest difference. For me it was letting go of my idea of how my home should function and just bowing to what works for now. I know the minute I am well there will be no "office" in my bedroom but, for now it works for me.

Survivor's Blog April 6, 2013 - A beautiful free scarf from France Luxe Good Wishes Program

I find it odd as a person being treated for cancer,  that there is not more help out there for folks who are sick. Don't get me wrong, a free wig from the cancer society is a blessing. But, I wonder with all the funds donated to cancer why we let so many cancer survivors suffer alone?  I regularly hear people in chemo who cannot pay their electric bills, or our losing their housing because they have to pay for cancer treatment. Even those of us who are lucky enough to be insured find ourselves fighting daily battles with insurance denials, crazy billing, and paying for all the incidentals being a cancer patient involves. You would think some of the money that all these charities collect would be allocated to help with the daily grind of cancer?  However, there is not much out there to really help with the day to day.

So today, I am focusing on a cool program that will at least cheer you up a bit if you are stuck at home with cancer. France Luxe is a corporation that has a heart. They make the most beautiful women's accessories including top of the line silk scarves. If you are a cancer patient all you have to do is call them at (888) 884-3653 or email goodwishes@franceluxe.com and they will tell you how to get a free scarf of your choice to wear. They even offer a special website you can go to to "shop" for and design your very own scarf. It is the coolest program out there.. they have specifically taken the charity aspect out of it ( so you don't have to be embarrassed asking for help). You just get to pick out your scarf and they ship it to  you.. they will also send you another little surprise in your scarf box ( but I won't spoil that for you here).

If you are not a cancer patient I encourage you to shop with them  so that they can keep this cool program going. Their website is www.franceluxe.com .

Reversible Silk Scarf from France Luxe

Survivors Blog April 5, 2013- Who the heck is Tara Robinson and why is she blogging about Ovarian Cancer?????

Hello Everyone,

I know since this blog is only six months old that so far the only people reading this are friends and family but, I wanted to introduce myself and share why this blog is so important to me!!

My foster daughter Angel and myself summer 2012

I am 46 years old, married and live in  the small town of Irmo, South Carolina. I am not a native South Carolinian, I am a transplant from California who kicked around the word for a bunch of years before I landed in Irmo. I have been chronically ill ( we will discuss this in a minute)  since about September of 2001 and that is what prompted me to become active in the online community seeking to help cancer patients and their families. When I am at work, I work for Michael's teaching the Wilton cake decorating classes and I also free lance teach at Orangeburg Technical College, Richland County Public Library, and other venues around town. When I am not at work I really enjoy my family and friends, cooking, gardening, and reading a good book.

Part of the reason I felt so strongly about doing something to help out in the cancer community is because when I went looking for meaningful simple things that would help me with my Ovarian cancer I did not find what I was looking for.

Here is what happened to me;  when I was 34 and newly married in 2000 I started to feel really awful. One day in September, I woke up in so much pain I could barely even breathe. I did not even really have a regular doctor here at this point so I hauled myself to the urgent care to get some help. They thought I actually may have injured my lower back in some fashion-- even though I could not remember doing so. I was sent off for an MRI and sure enough they found several herniated and ruptured disks in my lower back. I was sent to all sorts of doctors, pain specialists, and even the Medical University of South Carolina. I would always get a little relief but, never really enough to justify all the time and money I spent trying to heal my back up. As I moved through 2001 to 2002 the pain became more acute every month. I took a year off from the  job I loved ( and had worked my whole life for)  and stayed on my State Disability plan until it ran out. When I was out of disability payments, my doctor tried to get me moved on to regular disability but, I was immediately denied. I was much too sick and painful to go back to my career, so I reluctantly terminated my employment. I worked part time contract jobs whenever the pain permitted it and tried to maintain as normal a life as possible. Thank god for a very tolerant and loving husband,Oscar. I am not sure what would have happened without his support.

Sometime during this period of not working and trying to cope .. I was also diagnosed with hypothyroid, arthritis, and Fibromyalgia. I was well aware that when the neurologist diagnosed me with Fibromyalgia  it just meant he could not put a name to why I was in pain, or he thought I was completely crazy? The pain in my right side and  lower back just kept increasing exponentially, and I just kept trying to move forward.


After a few more months of not working, I realized we were not going to make it if I did not at least try to work a regular job on top of the contract work and eBay stuff I was doing. So I sucked it up and took a part time job in a property management office (pretty much diametrically opposite of any job I would have chosen had I been healthy). I knew I could only handle simple tasks and had to have a bunch of repetition if I was to keep a job and function with the pain I was in. It was still a huge struggle to go in there on bad days though- pain takes away some of your reasoning and logic skills. I was always making the stupidest mistakes in the world. I was very lucky in one respect though, my employer had also been diagnosed with Fibromyalgia and so she allowed me to adjust as needed. I stayed at that part time job for 5 years and each year the pain and symptoms grew. I made a pact with my regular doctor: he agreed to manage my symptoms and not send me to any more specialists, we would just do the best we could with what we had.

After 5 years, I had to leave that job as well. I just could not do it anymore and the physical part of it was becoming hard to do. ( You know you are sick when walking people through tiny apartments wears you completely out.) A few months later, I heard about a cake decorating instructor position at Michael's and applied for it. It took several months to get the job because, it takes you not only testing at Michael's to be approved, it also takes testing and being approved to work at Wilton too.   Never the less,  I have been at Michael's  for almost 4 years now and it is the best job I have ever had. Teaching has allowed me to become the artist I should have always been, and my students bring me joy every day!!

Me at SCOA January 2012

However, my " Fibromyalgia" kept progressing. One day in April of 2011 I had a ripping pain in my right side and back, it felt as if I had been hit with a bat! I went in to my doctor the next day and he sent me off for an MRI, they called me a couple of hours later and told me I had an ovarian cyst that had ruptured and that I must get to my gyno. immediately. I was in her office the next day, and she did an ultrasound to confirm the MRI. When the results came back they too said I had a ruptured cyst, the gyno assured me that usually they just absorb into your system in two weeks, so she scheduled another ultrasound for two weeks out and said to keep taking my pain pills until then. About a week later, I called and told them I could not wait two weeks. They said I should do so and reviewed my scan results just in case. The next day I was so painful I called them again, again I was told to wait or go to the emergency room if I was in pain. So I hauled myself to urgent care- the doctor there took one look at my vitals and hooked me to an IV and prepped for me to go to the hospital. When he reviewed my scan results and called my gyno. she told them I did not need to be admitted based on my scan results and scheduled me for a laparoscopy in two weeks just to make sure I was OK. Once again, I was sent home and told to take pain pills. Two days later, I had my husband take me to the emergency room. I screamed the whole way there with the pain. When we arrived it was 11 pm, thank god we arrived before the place became busy.

The doctor at the ER, Dr. Langley, ran some blood work and my vitals and decided that I was seriously ill ( thank god for a fresh set of eyes). He took one simple chest X-ray and 5 minutes later he came into the room with tears in his eyes and said " you have cancer, and it is everywhere!". He admitted me to the hospital that night even though the Oncology Ward did not even have room for me. I woke up the next morning in the Geriatric ward of the hospital.  By 5:30 am I was informed by an Oncologist that I did indeed have cancer and since they had no idea what kind of cancer I became the patient of 3 oncologists and I don't know how many residents. I was in that hospital a week before they could diagnose my cancer. Once they had the results they let me know that I had Ovarian Cancer stage 4, because the plum sized tumor had attached itself to all sorts of organs.

That diagnosis and all the misdiagnosis before it ( up to and including the scans I had in the month prior) are what led me to want to help others who have my condition. There is so much misinformation out there and so few concrete suggestions for taking care of yourself as you go through the maze that is cacner. I have looked down the barrel of Stage 4 Ovarian Cancer and survived. This past February I was again diagnosed with cancer, I have 3 tiny tumors in my belly. So once again I am in treatment for cancer and on chemo. I am a survivor  and this is the why behind " Scrambled Eggs" .....

Help with vomiting... Psi Bands

Since my diagnosis I have had a terrible time with nausea and vomiting. During my first round of treatments from June 2011 to January 2012 I lost about 40 pounds. Of course, part of that was a good loss, I was minus one tumor and a bunch of fluid (Ascites). The rest of the weight loss was from chemo induced vomiting and nausea. I was simply unable to keep anything down.

During my first round of treatment the doctor's had me on several drugs for nausea. I even took Marinol ( synthetic THC) to try and slow it down a bit. Of course, every drug has side effects and I found myself trying not to take the nausea drugs unless I just could not cope any other way because the side effects were so awful.

So far this time around I am doing a bit better with the whole nausea thing. I am sure partly it is because I am not that far into chemo. The other reason I am having less nausea is that I found a cheap solution to some of my vomiting.... Psi Bands. The Psi band is a little bracelet that you wear on both wrists to stimulate the psi acupuncture point on your body, this is a point that helps control nausea. They were designed for women with morning sickness but I am finding they are a very helpful tool in stopping my barfing.

I will admit I am still nauseated.. so they are not fool proof. They are keeping me from throwing up every time I turn around and I think that is well worth the $14.99 I paid for them at CVS.

You can also buy them at Amazon or on www.psibands.com

Survivors Blog April 3, 2013.. I found a very helpful website for patients.

When I came up with the idea for this blog I also thought I would create some kind of website to help Ovarian Cancer patients. As I was doing research on what my web creation would look like, I stumbled on www.medgift.com and wished I had come up with it.

The site was created by Diem Brown, a young lady who is now in her second round of ovarian cancer recurrence. She is sort of a celebrity, having been featured on MTV back when she had her first bout with Ovarian Cancer. Diem created www.medgift.com as a simple way to help cancer patients express their needs during treatment and beyond. Her web site allows a patient ( any kind of patient) to register on her site for free and create a profile. The idea is the site works like a gift registry. The patient puts in their needs and posts them on the site for friends and family to fill if they wish to do so. Genius!!!

She has freed patients from having to embarrass ourselves asking for help if we need it. The site provides a ready made list of things a patient might need and also lets you add your own items to the list of  options. Medgift  has all sorts of options for gifts ranging from monetary contributions (such as chipping in with a hospital bill) to gifts of time ( like pet sitting while the patient is hospitalized). She has also given patients a vehicle to express our wishes in our own time..when we feel well enough to do so ( I cannot tell you the number of times well meaning friends would ask .."Is there something I can do to help you? " and I was just too sick to come up with one single thing they could do to help!). Her web site allows your family and friends to do something much more meaningful and useful than sending flowers or a card.

This way when a friend or family member wants to help.. they can really do so!!!

So if you feel like helping myself and Oscar you can find me on www.medgift.com at Tara Dempsey Robinson.

Survivor's blog April 2, 2013....Do something to help someone.

Yesterday, I found myself once again in the waiting room at South Carolina Oncology Center . The staff  there is wonderful but, I find it so easy to sit there and be petrified about what is going to happen next. It is also a couple of short steps from sitting in the  waiting room to all out depression. I find it is really hard to let go, live in the moment, and let things happen as you go along. I always say that when you have cancer your "real" life stops and you are all of a sudden on your doctor's schedule instead of your own!

For me the simplest route to getting out of my own way is to concentrate on helping someone else. In  the past, the only charitable acts I ever did involved dropping of items to goodwill or donating a little money to charity (pitiful I know).  I felt we did not have enough of our own resources to be donating them to other people ( especially since I had been chronically ill for years before they finally found the real culprit.. an ovarian tumor.)  Cancer has completely changed my perspective. I  now I realize how blessed I am. I have a wonderful family, a supportive husband, and a home full of things that I love. So I try to focus on helping out when and where I can.

On bad days at S.C.O.A. I just try to do something small but meaningful,  like buying a Sprite for someone who looks like they were too sick to get out of bed in the morning. On good days, I try to use my couponing skills to help out my friends, family, and local charities with needed products. Amazingly with probably 15 hours of extra couponing effort, I was able to donate about half a truckload of food, personal care items, and pet foods to local charities or friends and family who needed them last year.  I also volunteered as a Master Gardener Intern and taught about 100 kids last year at Clemson Children's Garden.  Helping is actually what led me to this blog. If just  one entry  helps someone feel better or process what is happening to them, I will have accomplished my mission.

This week I am actually making some cooling scarves for all the ladies who will be in chemo treatment with me on April 10th. My mentor, Rebecca,  taught me how to make a simple scarf that will cool you down when you get the chemo sweats. Next week I will be bringing 10 of them to chemo with me for the ladies in the gyno. area with me. ( I will be posting an entry about how you can make some too in the next week or so.)

This was all donated to other families!!!
 

The point of all of this is not to toot my own horn! I want to
point out that no matter how sick you are, or how down you feel, you can help yourself by assisting someone else get through this cancer journey. It can be as small as a kind word or as big as you make it... 

Give it a try, you will be amazed at how good you feel.

Scalp Pain and Burning due to hair loss ... what helped me most.

Hi Everyone-

I am back! I have been off blog for several months because, I just was feeling too sick! Now I am on the mend and would like to get this blog rolling. My intention when I posted this blog was to help others who are having issues surrounding ovarian cancer. I wanted to put a positive, helpful, and practical guide out there that discusses the things that most helped me on my journey with Cancer. Soon I will be featuring posts from survivors and friends that hopefully will inspire you with creative ways to cope if you have cancer and help if you know someone who has cancer.

For today though, I want to dedicate my post to my new virtual friend Lisa in New York. She has just started treatment for cancer and maybe this will help her. Since I am just starting my new rounds of chemo these are tips I am using right now!! Remember I am not a doctor, this is just a list of things that I personally found helpful. Today it's all about hair loss due to chemo...

Here are a few things that my doctor did not tell me that really helped me through the hair loss process:

1. If your doctor tells you that you will be losing your hair...SHAVE YOUR HEAD NOW!!!
This may sound completely crazy but, I promise you no matter what emotions hold you to keeping your beautiful hair as long as possible. You will be happier if you just shave your head now. Sometimes when  your hair starts to break off and fall out you can develop infected hair follicles which are insanely painful. Also, if you do not develop infected hair follicles your head can still be very, very painful from the chemo and the hair loss becomes agonizing.

So I say shave your head and don't worry about it. You can always wear a scarf , a hat, or a wig!! If you are brave or just don't give a flip-- you can just run around bald like I do. I mean who really cares what other folks think of your bald head?

2. You can get a lovely wig for free. If you just have to have a wig, they can be very expensive if you go to the salon to purchase one. Most folks do not need the added expense of a wig on top of their medical bills. So you have a couple of wonderful options. The first is the American Cancer Society, they have local branches all over the country. Each branch has a wonderful selection of wigs for you to choose from. They also have free hats, scarves, and a bunch of wonderful folks to help you find just the right look for you.

The other way to obtain a nice wig is to ask your cancer doctor for a prescription for a " full head prosthesis" ( a wig) , most insurance companies will cover the cost of one wig in a lifetime. You can take your prescription to a wig retailer or a specialty shop for cancer patients and they will help you find the right wig and get it submitted to your insurance company for payment.

3. Clear up that painful scalp. If you are one of the lucky ones like myself ,who is in physical pain from hair loss contact your chemo nurse for suggestions. My nurse gave me several helpful suggestions that had worked for other folks and none of them worked for me. So I went to my second line of help.. my wonderful pharmacist. I was crying when I called her and she not only calmed me down, she came up with a super cheap simple solution....Neosporin for pain. When I went to Walgreen's to pick it up, I was even able to stack my coupons so that it was only about $1.00 for an entire tube.

 

 

 

That's it for today, I hope my tips help you out!!!