Take Care of Your Co-Survivor/Caregiver

This is a very important yet very difficult topic for me to write about. I've been putting this off until the right time came around. I am writing about this because I'll always be an educator at heart and my blog is about keeping my loved ones updated on my life and to help anyone that wanders to this blog. This one is about taking care of the co-survivor or caregiver.

A co-survivor can be anyone that is close to you and goes through the cancer experience with you. A caregiver is a lot like the co-survivor. The caregiver is pretty self explanatory; they take care of the cancer patient through treatment, etc. I'll use these term interchangeably though I like the word co-survivor better.

Looking back at my cancer experience, I think I was pretty self sufficient. At times, I think I may have been too self sufficient. I've always been independent. After college, I moved to Tucson, AZ without knowing anyone. I've always believed that I needed to get a degree and not be dependent on a man to take care of me financially. I should have been more specific about what I wanted and needed.

RJ was my co-survivor. This was not a position he needed to take on but he said he would. He did the best he knew how throughout the diagnosis, surgery and chemo. Somewhere along the way we failed to take care of the co-survivor. He did not feel as if he could speak with his friends because they either would not understand or were insensitive. Because of this, he did not vent his fear, anger, concern and issues with many people. With everything I was going through I did not check in on him often enough. I also needed to validate him more. (I've learned a great deal from Dan Shapiro PhD and his session on Couple's Communication. Both Dan and his wife were diagnosed with cancer and at different times. Sadly to say it was after the fact but it helps me help others.) RJ was a ticking time bomb ready to explode...and he did, beyond repair to our relationship of almost six years.

With respect to RJ, I will not delve into great details. I will, however, share what I've learned:

1. www.youngcancerspouses.org is a great online forum for young cancer spouses. It gives helpful tips to deal with the emotional rollar coaster, appointments, loved ones and most importantly the cancer spouses. I met Matt, the founder, at an MD Anderson conference this summer. He lost his young wife to cancer and is now researching cures for cancer at the Texas Medical Center. The online forum is amazing because men typically have a harder time expressing themselves with others. The online forum allows men to have access to other men around the US to post questions and fears.

2. Men really do want to talk. They just need an appropriate forum for it. Through the Pink Ribbon Cowgirls we hosted a caregiver appreciation event and events that were opened to our co-survivor. They may feel "forced" to attend at first but we always got positive feedback at the end of each event. Men need activities or things to do rather than feel as if they were expected to sit around in a circle and pour their hearts out. RJ was always hesitant to attend these events but I had to drag him from away at the end of the night.

3. Don't hesitate to see a therapist or counselor, preferably one that has experience with cancer, couples, and/or major illness. See one before it's too late. Most insurance companies will cover this.

4. Do nice things for yourself as a couple. Take a vacation. Go to the spa together. Try to keep normalcy but remember that life is short so live it up!

5. Communicate, communicate, communicate with each other! Talk about things that are beyond regular day to day things. Have the hard talk about life, death, sexuality, friendship, anger and fear. Validate each other. Establish new roles during treatment. Check in on each other at least once a week. Hold a "business" meeting and schedule one official date night a week. No business allowed during the date night.

6. Communicate with others going through similar experience. Refer back to number 1 and realize that there are other young people going through this too! As for the survivors, there are many, many online forums. The Pink Ribbon Cowgirls are a great one for those in central Texas. Planet Cancer and Young Survivor Coalition are two great forums that are nationwide.

7. Be aware of alcohol or substance abuse. Other problem behaviors may occur too like food, rage, spending, gambling, working too much and affair.



I took a great deal of notes while I was listening to Dan Shapiro.

Relationships are already difficult. Throwing in a cancer diagnosis does not make it any easier. Couples have even more things to deal with. Realize that couples and the co-survivor does not have to go through this alone.

The Waiting Game

I'm two days away from my exchange surgery and we still do not know if I will have it on Friday. After many months anticipating this surgery, I woke up Monday morning with a sore throat. It's cold and flu season. I've been on the go. Apparently my immune system is not the best.

I've been pushing the fluids since Monday. I've had soup for both lunch and dinner since Monday. I've consumed a great deal of orange juice and green tea. I've drank herbal immune fizz. I've added garlic, basil, cayenne and cilantro to my soups. HEB had coffee infused with Echinecea and I had a cup this afternoon.

My doc took a throat culture. He's 90% sure it's not strep. He's thinking it is a viral throat infection that may lead to a cold but we won't get those results until tomorrow at 2pm. My plastic surgeon is giving me the green lights as long as it is not strep. However, it's the anesthesiologist that gets the final call since that person is the one looking down my throat! I'm fine with having my surgery Friday as long as it does not compromise my health.

If I do not have the surgery on Friday, I'm uncertain when the next availability will be. Though work has slowed down, other aspects of my life will be need to be focused on. I'll blog more about that soon. So...here's when I really need everyone to send along all the best vibes. I'll keep you posted and wish me luck!

October is Breast Cancer Awareness Month

Phew, what a month! October 12th was our 13th Annual Champagne Brunch at the Renaissance Hotel at the Arboretum. The theme was "Magical Moments." The event was a great success and I was able to invite Cara, her mom Julia and Shelley. This group is a huge supporter for me here in Austin in my roller coaster cancer journey and I wanted to share this event with them. The remembrance ceremony was very touching. Names and faces of those that passed away in our 13th year of existence scrolled on screen. Some of these women were in their 30's and one just passed away the weekend before. There were many magical moments that day. Julia won the Green Egg BBQ in a raffle...magical moment indeed! We were down about 6% from last year but it was probably due to the economy.

October 8th was not part of the "Pink" month but it's still cancer related. Planet Cancer asked two other young survivors and I to represent Planet Cancer at a gathering. Those that attended were supporters of Planet Cancer but we were there to let them know how Planet Cancer has benefited us. Of course I highlighted the fact that I get support from those that are my age because my personal job is to support others. Everyone there was very passionate about the cause.

October 13th was declared Metastatic Breast Cancer Awareness Day in Austin. We had a tea at our main office for our metastatic survivors. Metastatic means the cancer has spread to a location beyond the initial starting point, in this case the breast, to another part of the body like the liver or brain. We had many women that were just newly diagnosed to those that have survived this for over five years! What warriors!

Bill Bastas compiled a book last year "The Smile Never Fades." I blogged about it how he lost his wife to breast cancer a few years ago. He's a photographer and decided to dedicate this live to raise money and awareness. I was in book one. Book two focused on cosurvivors and the survivor. I wrote a tidbit on my Pink Ribbon Cowgirls. Of course, my Cowgirls were all over that book. They are NOT shy at all! We had a wonderful time at Bill's book release party on October 15th. The atmosphere was wonderful. The music was fantastic. The food was delicious and the love was tremendous! Below is a presentation of what it means to have encountered the BCRC and PRC:

October 21st was Shop for a Cure. A fellow Cowgirl wanted to raise money for the BCRC so she invited vendors like Pampered Chef, Arbonne, MissBevery Designs, etc to sell their products. A percentage of the proceeds goes to BCRC and women can have fun and get a head start on holiday shopping. Another fellow Cowgirl is coming out with a book soon. I'll be sure to post the info on here. It's about a single thirty something year old with cancer. She's calling it Off the Rack. She has a great logo for it and I had to purchase one of her shirts of course! I'm just doing my part for the economy.


October 25th was the LiveStrong 5K. I walked with a small group of Pink Ribbon Cowgirls this year. This is my third time as a survivor participating and race day is always so electrifying and full of warmth as you see thousands of people out there participating for their loved one.

Komen sponsored many events too. I usually participate in more but this month was wonderful but tiring. One big event that I do with Komen is Race for the Cure. It's November 2nd and I'm team captain for team Pink Ribbon Cowgirls. We had over 60 participants last year. I think we're coming close this year. So far my team is in the top 100 for raising the most money. This event is always so special...it amazes me that I participated twice before I was diagnosed. This will be my fourth time participating but my third time as a survivor.

The Sun Eventually Sets

I spent September 12th to the 14th at The Crossings in Austin. Above is a picture of the sun setting and depicts the beauty of The Crossings. It's hard to believe that The Crossing is about 10 minutes from my house. Planet Cancer, www.planetcancer.org, hosted a retreat for those that are 25 to 40. A little history about Planet Cancer is that it was started several years ago when Heidi Adams was diagnosed in her late twenties and had no one to reach out to. They focus on an online forum and retreats to support those that were diagnosed in their 20's and 30's.

Let me back track a bit. I work and support the Pink Ribbon Cowgirls www.pinkribboncowgirls.org or www.pinkribboncowgirls.ning.com through the Breast Cancer Resource Centers of Texas www.bcrc.org. The PRCowgirls are close to 100 amazing women. I love what I do. I support newly diagnosed women and women that are further out of treatment. I coordinate activities for our group and I manage the online forum. I get a great deal out of it and so do the women I support. However, some personal events have happened to me in the past year that I will blog about in a later time. From this I realized that I needed support for myself and to start taking care of me.

Heidi and I have been trying to touch basis for some time now. We finally connected and there I was all signed up to go on the retreat. The retreat was great. There were 30 some young cancer survivors from all over the US there. There were breast cancer survivors to melanoma survivors. There were people from stage I to stage IV to incurable. It was a very humbling experience to be around everyone. There were many tears the were shed but spirits were high and there were also a great deal of laughing and joking around.

One of the most powerful thing for me was our last day there on Sunday. Heidi walked a group of us to the labyrinth. It was time for reflection. It was a time for us to reflect on the grief we have experience for our self and those that we care about. It was time to remember those that we have lost along the way to cancer, a horrible disease. She asked us to take as much time as we needed. From there, we were to choose an object we found on the grounds and then to walk the labyrinth. Once we reach the center of the labyrinth, we were to place the object we picked up in the center.

I grieved for the devastating changes it has done to me both physically and emotionally. Cancer has changed my life in many ways. There have been both positive and negative changes. It has changed my relationship with my body, food, friends and significant other. I grieved for those that I support that have recurrence or metastatic cancer. I grieved for the new friends that I met that had an incurable cancer.

Cancer is removed through surgery. The hair grows back after chemo. Cancer "goes away" but the stigma never leaves. Grieving is a normal process. I've learned to allow myself to grieve more.

Exchange Surgery: November 7th

"Slow and Steady Wins the Race" is a quote a former student of mine chose from a book of quotes. He's an amazing student and person and I stand to learn a great deal from him.

I changed my surgery date to Friday, November 7th. I spoke with the nurse and she said I would run a higher risk of blood clots, especially if I'm traveling on a long flight. My flight isn't too long but why chance it? Also, they don't think I'll need drains but they won't know until they get in there. If I get drains, I'm screwed. There's no way I can fly with drains. Drains run a much higher risk of infection and we know how contaminated the airport and plane is.

I forgot that I have the LiveStrong and Race for the Cure on back to back weekends. My first free one is November 7th. I've waited this long to get this done what is another few weeks? Besides, it will be an early 32nd birthday and 3 year survivorship present for me.

Send me good vibes, wishes, air hugs...you name it, I want it! I'll have many things to be thankful for this Thanksgiving. I will finally say my health, family, friends, job and my sense of wholeness.

Almost Done!

Well, I met with my plastic surgeon this morning. So far so good! He will exchange my expanders with my implants by making an incision underneath my breasts. He will use some of the skin from that area to reconstruct my nipples. He must place the nipples either above or below my original incision. That means my new nipples will be slightly higher or lower than they are supposed to be because they need to keep the oxygen supply alive and they cannot do that over the scars. My nipples will probably be fairly small since I don't have that much skin to spare. However, when they tattoo, they can go around it to make my areola appear larger. Wow, my very first tattoo ever!

He originally told me that I would have to have my nipples reconstructed at a later time but not so! I will have to return in three months to do my tattoo. One step closer to being done!

The next two months are crazy for me. I was in Houston last weekend for a conference. I have a retreat the following weekend. October is already busy between flying in for my sister's wedding to our biggest fund raiser of the year with work. My only possible opening to get this done soon is September 25th. If not, it won't be until end of October. The good news is that the recovery for this surgery is supposed to be much, much easier. He will devote about an hour to each breast. I spoke with two fellow Cowgirls today and they said they were up and about shortly after. If I have my operation on the 25th, I have to fly out to NM October 2nd. That would only give me seven days to recuperate. I should be able to do this as long as there are no complications from my surgery and I'm not too swollen. I need to double check with my doc tomorrow. I didn't discuss this with him because I didn't know his availability until after we finished up. He said I shouldn't need to stay over night and most likely I won't have to have drains put in. However, he won't know about the drains until he goes in.

Decisions, decisions! I'll keep you posted. Just wish me luck and send me good luck for a smooth surgery and speedy recovery if I go with the 25th!

It's Smokin' Hot Here in Austin

Happy September! School is back in session. Fall is around the corner. The days are starting to get a little shorter...but it's still smokin' hot here in Austin! It has been over 100 degrees with the humidity here. It's also chile season where they import green chile from Hatch, NM. I just had some and my mouth is burning. Hot but yummy!

Great news! I did have my chest, abdomen, pelvic and bone scan last Friday. All clear! It's worth drinking the massive amounts of Barium they make me drink and eat. The "pudding" is the worse. It lingers in my mouth and throat. It made me want to throw up. The Barium is to provide contrast during my CT scan. They also inject it through IV while I'm in the machine. It gives you a warm sensation, almost as if you urinated on yourself. They make you hold your breath and it's all over in about 10 minutes. You're supposed to fast prior but I goofed and had some food. I only get this specific scans once a year and I get it confused between the requirements for the MRI and the pelvic ultrasound and they didn't remind me.



As for the bone scan, they inject radioactive tracer in you and it travels into my bones. A special camera takes pictures of the tracer in my bones and it takes about 30 minutes for the actual scan. There's a great deal of waiting time in between. I was there from 11:45 to 4:45 pm.

Also, I haven't been able to sleep very well in August. I would fall asleep and then wake up four or five hours later tossing and turning. I tried melatonin, Valerian root and Ambien. I was getting desperate and found an article in the Natural Solutions concerning sleep. They recommended other supplements so off to Central Market I went. The person that worked there recommended Edge Effect by Eric Braverman. The book is on how there are four lobes in our brain and we can either be deficient or have access of dopamine, serotonin, GABA or acetylcholine. I'm apparently GABA dominant because of my love of stability. (50% of the population is GABA dominant.) I apparently have been deficient of it recently. I took a supplement that included GABA, magnesium, Reflora and L-Theanine. 4 out of past 5 days I've sleep better than I have in August. I need to do more research about these guys but getting sleep is an amazing feeling! His theory in a nutshell. He also has a website too, just Google him. I like this one because it's to the point. http://www.createvibranthealth.com/NT.htm

I see my oncologist in November but I'll probably email the nurse and pick her brain about these supplements. The great thing about this book is that he recommends meds for severe people. Then he would like to ween you off to supplements and then get everything from your diet only.