Survivor's Blog September 29, 2013 - The Warning Signs of Ovarian Cancer...

I was going to do a page on the symptoms of Ovarian Cancer but,  I found this page done by W2W Magazine, I could not do a better job than they have done here.

Ovarian Cancer is the 5th largest cancer killer among women yet many doctors are not even aware of all of the symptoms. Those of you that have followed my progress with this disease know that at least 5 doctors looked right at my tumor and misdiagnosed it. So knowing your risks and the symptoms is up to you!!!!

Survivor's Blog September 28, 2013- On Happiness....

A life threatening cancer diagnosis causes strange things to  happen. In my case, I have had so many people help me and my family, that it is hard to know where to start thanking people. If I had to write Thank You's to everyone it would probably take me a week to do. Before cancer, I was never sure where I fit in? I felt like I was always on the outside of life looking in. I was  always striving for more and never fully happy. Of course, some of that is my California upbringing. We silicon valley kids are taught to keep striving for bigger, better , and more in life regardless of where we are in life. Sometime in July 2011 during my hospital stays.. I discovered that I was truly loved. Not only was I truly loved but, my family was valued and loved deeply as well. This discovery changed my whole being.

More people than I can even list or mention, went out of their way to help us in both small and large ways. People we were only remotely connected to, stepped up and helped us in surprising ways. All of this help and support manifested in my life and caused a profound change in my life and way of being in the world.

For the first time in my life, I was truly happy! I know how crazy that sounds.. how can a person be happy, content, and even joyful with a stage 4 cancer diagnosis hanging over their head? I cannot explain fully, how the change in my emotional life came about, only that it did. I do know a small part of the positive change did come from finally knowing for sure what was wrong with my physical body. I had been really, really, sick for over 10 years  with no real diagnosis. The relief that comes from knowing what was wrong and receiving the proper treatment for it was nothing short of a miracle! I think that the rest of the emotional change came from finally knowing what my place was in the world. The change did not stem from people doing things for me or helping us out. It stemmed from finally being able to see clearly where I fit in. Oddly, Cancer gave me permission to jettison all the silly stuff and just get down to the core of who I am and what I want. Cancer allowed me to finally be myself... appearances be dammed.

So if you see me out and about, be reassured that I am happy as I have ever been. I am grateful for my friends, family, and lifestyle. I am not unhappy about my cancer, so there is no need for worrying.. life is sooo good.

Therapy Dogs- my favorite day at SCOA .. Phoenix day!

OK, I will admit it.. my favorite nurse at SCOA is not really a nurse!!!

He is a volunteer  therapy dog named Phoenix. He comes in with his Mom, Kathy, to cheer people up. It certainly works for me! Who can resist this big Great Dane coming and putting his head down in your lap for a pat on the head?

SCOA actually has a number of human and doggie volunteers who help the patients out on a daily basis. Each and every one of them has certainly earned a great big Thank You!!!

Survivor's Blog September 26, 2013- As a patient you have the right to ask questions...

Hello Everyone-

Quick update for those of you who are checking on me. My chemo went well yesterday, I am still riding high on the steroids so I am pretty OK today too ( outside of a little nausea).Nothing else to report health wise.

So I wanted to do a post based on a discussion we had yesterday about Cancer Care and health care in general. I think many people feel strange about this topic and it is why I am going to address it in my blog:


Patients have a right to question their doctors!

We have a right to say "no" to any treatment we are not comfortable with.

We have a right to ask for pricing and insurance coverage before we say yes to a procedure.

For those of you that have not met me, I live in the US in the deep, deep south. The prevailing patient attitude here is that Doctors are all seeing and all knowing. As a patient this translates to following your doctors orders to the letter without question. Many of he folks in treatment alongside me don't even seem to be clear on their diagnosis, they are just following the doctors recommendation for treatment! If you are comfortable with not knowing what is going on with your health, this is definitely the way to approach treatment. As a Cali girl, I  grew up with the California attitude.. Question Authority. I come to every doctors appointment with a note book and questions. I want to be very clear on both my diagnosis and the options that I have. After I have finished the appointment I save my notes and go over them later for clarification before I make any decisions about what treatment I will approve and what I will research.  My oncologist was extremely offended by this at first, we had several battles over my questions. I finally told him, I am not looking to contradict you, or offend you I just want a clear understanding of what my choice are and how those choices will affect me. That was our final battle about my questions and notes, he now comes into the room and just takes the notebook from my hands - he patiently runs through each question with me and then he presents his agenda for the appointment.  If I am too sick to ask questions, I bring someone with me who will --and I also have them take notes.


You also have a right to say "No" to any treatment you feel is not for you emotionally, health wise, or financially. For example, when I am on chemo. treatment,  my hemoglobin often drops way below average levels. I can actually tell before they test me that it has dropped because I feel so awful! The standard treatment for this is either a shot of a medicine called Aronesp, or a blood transfusion. Either option comes with risks. For me personally, I can accept the risks of the shot if I so sick that I need a quick fix. I personally feel that if I have to have a transfusion to keep me going, we have pumped more chemotherapy into me than I can handle. If this is the case, I think it is time to stop chemo for a while and let me heal,  not have a transfusion! My doctor does not agree with me .. but, he is not the one in chemo, I am!!! So I say no to transfusions in this case.. it is my right and everyone has been made aware of my choice.

Finally, you also have the right to ask questions about cost and insurance coverage before they do any treatment on you. You also have the right to negotiate!! Please be aware- you may be quoted three different prices for the same procedure! Medicine seems to be like the used car dealers, they charge what they think they can get you to pay and they have no shame about an aspirin costing $40.00!!! It is your job to ferret out the financial option that works for you. I am aware that for some of us our costs are so high it seems like nothing will work ... this is when you need to pull out your negotiating skills. You can make this work.. you just have to remember they do want to help you get well.

Survivor's Blog- September 25, 2013 Chemo update...

Today is chemo day, I am already hooked up to an IV. Hopefully, this means I will be able to leave as soon as possible. Believe it or not, the past two weeks have been fairly good.  So far on this chemo I feel a bit better than I have in the past few months.

Erin came down for a couple days to take me to chemo and help me out with my crazy house. I am so grateful she was able to come down and help me!!


Prayers please for my friend Donna who is still awaiting her biopsy results today.

Survivor's Blog- Some helpful products if you have Neuropathy or Foot Pain

I have been on chemo for almost a year this time, if you add the chemo I did in 2011, I have had 16 months of chemotherapy in the last two years. That much chemotherapy means you are bound to have some really nasty reoccurring side effects. This morning I find myself reminded of my treatment by severe pain in the bottoms of both of my feet. It is really going to hurt to get out of bed today. Despite the pain, I will get out of bed and go on about my day. I have a Gum Paste Flowers class to teach today and my advanced students always cheer me up and inspire me! On top of that my wonderful sister, Erin, is taking a week of her time off and spending it with me starting after class today.

So here are a few tips that I use to short the pain receptors in my feet and get on with my day:

1. Cooling slippers- The Sharper Image sells a "cooling slipper" that is designed with cool gel in the foot bed. The slipper soothes painful feet and provides lots of padding to help you get around.

Sharper Image Slippers from Bed Bath and Beyond.

2. Pain relieving gel or creme- I use either a Ben Gay type cream or a Bio Freeze and roll it on my feet before I sleep at night and after I take a bath in the morning. I like the relievers that are as close to all natural as I can afford. The ones with Cayenne in them seem to work the best for me.

3. Hot bath- I use hot baths to help with pain as often as I can. It helps if you can occasionally use Epsom salts in the bath. The other soothing bath I like to use is with Johnson's Baby Bath in it- I like the one with Lavender for sleep. For some reason the lavender helps ease pain.

4. Diabetic Neuropathy Cream- You can find this with the diabetic supplies at your local pharmacy. I do not have diabetes but, I do have Neuropathy. This condition either causes my hands and feet to be completely dead and numb or they become very , very painful and sting for hours. The cream just helps ease some of those symptoms. If I use it , I skip the Ben Gay.


I hope these tips will  help you out. Please remember I am not a doctor, these are just things that have worked for me in these long months of treatment.

Survivor's Blog- September 21, 2013 How Cancer has been a theme in my life...

In some ways, I think I was destined to become a Cancer Patient. I know for sure, that Cancer has been a strong recurring theme in my life. This blog will tell you how Cancer first made an appearance in my life. I think that my diagnosis may have been a way for the universe to push me in the direction of becoming a Cancer Advocate. No matter how hard I try in life I cannot come at anything the easy way or the typical way.  For some reason it always takes me longer to see my path in life than the next guy. So here I am blogging when I can, trying to get the word out there about Ovarian Cancer. My next goal will be to do some public speaking on the subject when I get done with Chemotherapy treatments. So if any of you need a fledgling inspirational speaker look me up.

Maybe I should start today by telling you all why I think Cancer is one of the themes of my path in life. Those of you who know me from childhood, know that I grew up in an oddball home. I had parents who loved me but, could never express that love in a normal healthy way. When my parents separated I was 13 years old. They were so busy fighting, bickering, and tearing down what they had built during their marriage that they left my sister and I to fend for ourselves. Regardless of anything else in my life, I became responsible for myself at age 14. I ended up running my life with little or no supervision from the adults in my world. As with most kids that this happens to, I was in a tailspin that first year. I tried drugs ( many drugs), ran with a rotten crowd, and generally did anything I could to get anyone to notice me and do what adults are supposed to do when a child is clearly having issues. Fortunately, god blessed me with a functioning brain and I started to come down to earth and back to normal when I was 15.

I owe a large part of my journey to the friends I had at the time: Carol D., Liz S., Karl T., Valerie B. and Yvette M.. All of these amigos had wonderful parents, who saw what was happening with me and stepped in to raise me. I know for sure if Carol's Mom had not semi adopted me, I would never have lived through high school. Gloria D. was the woman who made sure my parents paid for school clothes and supplies, and took me shopping to get them. Liz's mother and Yvette's mom both allowed me hundreds of sleepovers. Liz's Mom let me tag along on trips out of town with  her family, she helped me get to my SATs, and took me to do things I never would have experienced with my parents (like Highland Games).  All of them gave me a glimpse at what a normal life should look like.

As I grew up and left the small town I was raised in , I had many people stand in for my parents and made many friends. Cancer became a recurring theme in my life from age 14 forward. The first experience I had with Cancer was when my childhood friend, Valerie B.  was diagnosed with Cancer our Freshman year at Lost Gatos High School. Valerie was one of the smartest, most dynamic people I knew. She was in advanced classes and when she wasn't at school she was a ballerina. She was the kind of athlete that was on toe shoes and aiming to go to ABT if she had a chance. We hung out in 4-H club together since we both had a love of showing and raising Rex rabbits. We had joined 4-H together at age 9 and it was the glue to our friendship.

Otherwise , I was so absorbed with trying to take care of myself that I did not take very good care of her. She was so brave. I remember one afternoon as we were leaving school together to carpool home she decided to run to the car. As soon as she took her first running step.. her wig flew off. I will never forget her laughter at being bald in front of the high school. There I was mortified for her, and she thought the whole thing was too funny. In retrospect, I can see the road map she gave me for dealing with Cancer with as much dignity as you can muster.

 I of course, had my own demons to fight at the time. I was growing apart from Valerie simply by geography. I had to live with my Father in San Jose  and she had a wonderful life with her family back in Los Gatos. As we went through high school she had to stop taking classes on campus and take classes at home. Our relationship dwindled down to phone conversations and the occasional activity together. Her disease scared me, I did not understand it. I was too young and narcissistic to have any empathy for her. As far as regrets in life go,  I don't have many. My failure to do more for Valerie is probably the one thing I would go back and change if I had a chance.

Valerie actually made it through those four years of high school. We graduated together in 1984 and she proudly walked at graduation with our class. She died about 2 weeks later from a brain tumor that the doctor's had failed to diagnose . I had no one to support me and take me to her funeral, so I did not go.. it scared me too much. To this day I regret not being there for her family and for her.

Valerie, wherever you are now, I want to thank you. You taught me that you can be happy regardless what happens to you. You taught me that you can move forward in life no matter what your circumstances. And finally, you taught me that good friends are not to be discounted. We don't get many chances in life for true lasting friendship. We get even fewer chances to help our friends transition from life to death with dignity and happiness. I blew my first chance and have been making it up ever since. I hope wherever you are that you can see how you changed the course of my life here on earth.


The photo is a  1976 Photo of our 4-H
Field Day!!

Survivor's Blog September 20, 2013- Nail Care during chemo ( more things your doctor does not tell you...)

Hello Everyone-


I am feeling a little bit better today, still exhausted but, better! I decided I had the energy to give myself a manicure and pedicure. Every girl should be able to feel feminine once in a while. For me it is very hard to feel beautiful or even presentable during chemo. After all, I have no hair on my head, my limbs are all swollen and so is my face! I also have a very visible set of scars. One of my scars actually covers an implanted port. My nails look awful! I tried Sinful Colors Polish in Grey Leather and it was beautiful at first. Now it is a big eyesore! As a cancer patient, I cannot go to the salon to get my nails done- the risk of infection is too high. So I have to do all my beauty routine at home.

I thought today might be the day that I let new cancer patients in on a few things your doctor will never tell you about your nails:

1. Depending on what type of chemo you are on your nails will flake like crazy.

2. Certain kinds of chemo will cause your nails to try and leave your fingers on a regular basis. They lift up just as if they were acrylic and leave you with a sore, sometimes bloody mess.

3. If you have Lymph edema in your legs or arms you can no longer cut your nails, trim your cuticles, or do anything that might cause a cut!!! If you do cut yourself you run the risk of a big infection that will not heal  because your lymphatic system no longer functions.

4. Your salon routine is a thing of the past. You cannot go to the salon during chemo due to the risk of infection. If you have lymph edema you may never be able to go to the salon for a mani/pedi again!

So here are my tips for giving yourself a manicure or pedicure during chemotherapy treatment. These tips are ongoing for anyone who has Lymph edema ( since you will still have Lymph edema post chemo treatments.

1. If your nails are actually lifting, wear rubber gloves anytime you have to have your hands in water for more than a minute. When my nails were at their worst I even wore gloves in the tub

2. If you can trim your nails- keep them as short as possible.

3. If you cannot trim them due to lymph edema, invest in one of those three sided Emery boards and keep them filed as short as you possibly can.

4. Keep a coat of polish on at all times- this slows the flaking and the lifting.

5. Use a super concentrated thick hand cream on a regular basis, so that you keep from getting hang nails or dry cuticles that could become infected.


I hope these tips will help someone out! Please remember, I am not a doctor. The tips I am providing are just tips I used to help myself during my treatment.

As a Cancer Patient it is important to set some goals...

This past week, Oscar's employer switched insurance companies. Normally, this is not an issue but, when you are a cancer patient everything is exponentially harder. The change in insurance caused me  to chase around several billings that were posted to the wrong insurance company, re certify a procedure that I needed to have in two days, and most importantly I lost my beloved case worker Eileen B. If you are a cancer patient and you do not have a case worker provided by the insurance company call immediately and get one- they are invaluable! Eileen helped me with everything from side effects to billing!  She also called and listened to me on days when I was desperately sick, or down. Basically, I was able to tell her all the things you don't want to burden your friends and family with. Since she is a nurse, she was able to provide me with some creative solutions. One of the things Eileen helped me to do was maintain some goals through all of this cancer "stuff"- so that I could always keep my eye on the ball.

Yesterday, I finally got to know my new case worker, Lisa J. a bit better. Once again I had to come up with some goals for myself. As a patient with stage 4 cancer, you may think that your only goal should be:

Survive!!!!!

I think that if you really want to live and do it well- you have to do more than just survive your cancer treatment!! So here are the goals we made for the next few months:

1. Find local research studies that I might be eligible for? ( in case I choose to go off chemo in 2014)

2. Research new and alternative methods of treatment that are available in our area. ( qualifier:these have to be covered by our insurance and close enough I could drive there)

3. Figure out and complete all  Medicare Paperwork- find out how this affects our current insurance coverage and our family financially.

4. Get this cancer to a manageable level so that it can be treated like a chronic disease. ( this is not pie in the sky- it is my Oncologists goal for me as well).

5. Live to a ripe old age as a productive member of society!!


If any of you would like to help us with our research, I would be happy to put you to work. Much of this involves studying and reading which is really hard for me right now due to the chemo. I have lined up a few allies to help me but, I could always use a few more.

These are goals that we are working on together as a team. I figured if I posted my goals for all to see, it would be easier to stick to them. If nothing else, you can remind me of what I am supposed to be doing.

Survivor's Blog- September 17, 2013 - Chemo update

Hello Everyone-

Just a quick update for those of you who have been checking in on me. I had my chemo last Weds. and I actually had a couple good days following the treatment. Apparently, this is one of those chemos that makes you so tired that you don't even want to move. Hopefully, I will be out of this "exhausted" phase shortly. Even talking on the phone makes me tired!!! It is hard to get anything done.

Steroids and Chemotherapy- the stuff your doctor does not tell you...

The past few weeks have been up and down for me, I took at 3 week break from chemotherapy to decide if I wanted to try a new treatment. By the end of the first week off, I was miserably sick.  The pain up under my rib cage ( where I have a small tumor) was excruciating and I had abdominal pain that took my breath away. I suspected it was from the lack of steroids in my system.

The doctor's fail to tell you that the way they force your body to accept chemotherapy which is essentially a poison, is to also add large doses of steroids to  your treatment. So while you are sitting there getting chemo. you are also getting a large dose of steroids.

Usually this dose of steroids is the reason for people feeling so good the first few days after chemotherapy. The steroids give you boundless energy. They also help with any pain a patient may be experiencing. The doctor will not tell you that when the steroids start to wear off you are going to start getting sick, sick , sick.

The problem for me seems to be that I have been getting steroids for a year, so when you take them away I become sick. My doctor and nurses sort of shined me on when  I mentioned the lack of steroids as possibly causing my pain? Yet when I restarted my chemo this Wednesday and got dosed up with steroids, my gut pain slowed up considerably.  Today is Friday and the only abdominal pain I have is up under my rib cage.

I wonder if there is any research out there on this phenomenon? If you have heard of any literature on how to get through withdrawing from steroids when you finish chemo I would appreciate you sending it to me.

***Once again I need to mention I am not a Doctor - this is just my interpretation of what is happening to me based on my physical experience.

Survivor's blog September 12, 2013 - Chemo update

Hello Everybody-

I apologize for abruptly stopping my blog posts last month. The final round of Topetecan Chemotherapy was pretty brutal and I was just completely worn out. Finally, at the end of August, I had a doctor's  appointment to evaluate the 3 months of treatment. Turns out the past 3 months of chemo did not work, my tumors grew slightly and my blood work is once again moving the wrong direction. I was really disappointed because the Topetecan was the first drug I have been able to tolerate since starting this process in January 2013.

The recommendation of my doctor was to do more chemotherapy to eradicate the tumors. I have to say I had to take a break of a couple weeks and think about it. I am emotionally and physically exhausted! I finally did make a decision to let them try one last type of chemo on me. So yesterday I had the first of three treatments with a new set of drugs Gemzar and Avastin. So far I am doing fine-- no allergic reactions. I just have a wicked headache!!!

For those of you trying to keep up with my schedule - this treatment is given once every two weeks for a month then I have a doctors appointment the following week to check my progress. This means my next chemo will be on 9/25 at 8:00 am.

I would like to thank all of you for your support and help this year. Oscar and I are both so blessed to have you all in our lives!                                               

Tara