Archive for October, 2009

Infection

Friday, October 30th, 2009

Leave it to Garrett to come up with something out of the ordinary…I developed an infection two and half months AFTER radiation.  Typically, the infection shows up within three weeks of treatment….not me…I wanted to be different.  The only signs I had that something was amiss was redness around the area where the catheter had been inserted.

Yes, I went to the doctor and was given some antibiotics which didn’t phase the infection.  We went through 8 weeks of on and off again antibiotics, which didn’t work.  Finally I went back to the doctor ready for some action.  My options were to continue as we had been doing or have a mastectomy.  WOW…how could we go from an infection  to a mastectomy.?  I thought mastectomies were for cancer patients.  I didn’t realize it could be from infections.

My dear doctor was more concerned about the removal than I and he assured me I could do reconstructive surgery.  I let it be known at my age, I doubted I would go for another surgery because prothetics would work just fine for me. If I were in my thirties or forties I would have a different mindset but not at 64 years old.

Surgery was July 27th and all is well with me.  The healing process is taking longer than I had anticipated, but I have my health and life is good.

Lesson learned:  it is not how you get there but it is what you do with the journey along the way.

Challenges

Tuesday, October 27th, 2009

Once I knew I could do the radiation for 5 days, I was thrilled because I didn’t have the time for the 6 week program.  The doctor inserted the first catheter and when I went to the radiation oncologist, he informed me my skin was too thin.  Now, what was I going to do?  He discussed with me additional options and by this time, I was so confused and devastated because I wasn’t sure I was still a candidate for the radiation fast track program.

The radiation oncologist assured me there was another catheter, which I was a great candidate and he wanted to use it on me.  I didn’t care as long as it was only 5 days of radiation.  Whew…missed the 6 weeks bullet of radiation.  All went well with the 5 day program and my team became great supporters.  In fact on the last treatment, one of the team members told me he was sorry we had met under such circumstances but he had enjoy getting to know me.

Lesson learned:  look for the humor, wear the red clown nose, get plenty of giggles because it makes the treatment and time go faster.

Treatment

Wednesday, October 21st, 2009

When meeting with the surgeon, I was apprehensive, but knew my cancer was not going to be as intensive as Gene’s…mine was going to be a walk in the park. The surgeon and I discussed my options and decided on the lumpectomy, followed by the new procedure of having radiation 5 days a week but twice a day.

However, once he removed the lumpectomy, he called with the report.  When he mentioned pathology report, I froze over the phone because no one had mentioned this  to me.  From my previous experience with Gene, I knew this was not a good thing.  I do not remember what the doctor said, but I heard  him ask me what did I want to do and did I have any questions?  I realized he needed an answer from me, so I asked him what my game plan was going to be.  He told me to come into his office the next day for further discussion.

When the shoe was on the other foot, I asked questions on the spot with Gene’s doctors but when it concerned me, I couldn’t think of the first question.  However by the next day I had two pages of questions for the surgeon.  He spent plenty of time with me answering all of my concerns and then came up with a game plan.

However, he was going to have to go back in and remove the nipple because the tumor was located right behind the nipple…so I needed to have a second surgery….bummer.  After the 2nd surgery, now I could concentrate on the treatment, which was radiation for 5 days, twice a week.

Lesson learned:  ask plenty of questions.

Breast Cancer Diagnosis

Monday, October 19th, 2009

I have been called Betty Boob all my life and didn’t make the connection until later  when I was diagnosed with breast cancer in Dec. 2008.  It had been two years since I had had a mammogram but it hadn’t been on my radar because I was taking care of my 89 year old mom and running two businesses.

When I went in for my first mammogram in Nov. 2008, they called me back because I was so photogenic…yeah, right.  After the 2nd mammogram, they asked me to return for a needle biopsy.  I began to get a little concerned because this sounded suspicious to me.  They had found a very small tumor right behind the left breast and wanted to do more testing.

Just so you will know, one out of every three women will be diagnosed with breast cancer.  But keep in mind, there are over 2.5 million breast cancer survivors today.

I don’t mean to scare any one about the needle biopsy but it was one of the most difficult procedures I have ever had to experience…and probably will not do this again.  I was pulled, squeezed, mashed, and tortured that when the doctor came in, he replied the needle might sting.  I looked at the doctor and said…Doctor, this tit is so traumatized I am not going to feel a thing…but let’s get one thing clear.  You had better get all you want and all you need because you are NOT coming back for seconds…do you understand?  He got the picture.

Yes, I was diagnosed with DCIS, one of the best cancers to have because it is non invasive and not life threatening.  Lesson learned:  as my husband said when he was diagnosed: Betty we are going to play out this hand that has been dealt.  Guess what…these were my thoughts as well.

Get rid of the guilt

Thursday, October 15th, 2009

Yes, this was the hardest thing for me to do with Gene because I wanted to be with him all the time, but I knew I had to take care of myself.  Even if I wanted to take a five minute break and just go walk around the block, I didn’t do it at first because it may appear that I was NOT doing my job or I didn’t love him.

As the journey continued, I knew, I had to get over this feeling.  He might need a reprieve from me too!  Thank goodness my parents lived close by so I could call them to come over and have Dad stay with him while Mom and I would go shopping or even go to the grocery store.  One time when Gene’s son came to visit, I allowed myself to go see a movie just to get out of the house.

There were times I would call some of my girl friends to have lunch with me.  This was fun because I got to feel “normal” again and feel human.  Once again if the inevitable happen, I had no control over this…and would feel this was the way it was supposed to happen.

Give yourself a break and rid your thoughts of the guilt.

Look for the humor

Tuesday, October 13th, 2009

Humor is what is going to get you through this passage.  It may be a little on the dark side but if it gets you a giggle why care?  I will never forget the time when Gene has lost quite a bit of weight and I decided to go on this cooking spree to fatten him up.  One night as we were lying in bed, I raised up and told Gene were we going to have to sleep in separate beds. Of course this floored him and he wanted to know what was he doing to cause me to go to another bed?  I replied…do you know those fat cells you are losing, they are finding their way to my side of the bed to my rear and he had better stop it.  Yes, we got a huge laugh out of this. So look for the bright side and enjoy the moment.  Forget about the what if’s, and live only in the moment.

If you are lacking in the creativity aspect, look for the red clown nose and you can have a lot of fun with it.  Doctors do not know what to do when they walk in and find a red-nose caregiver in thier office.  They love it because it breaks the ice and causes them to realize they are human, too.

Record your thoughts

Thursday, October 8th, 2009

One of the things I used during Gene’s journey with esophageal cancer and my breast cancer diagnosis was to use a journal for my thoughts.  I found it helped a great deal to record my inner most thoughts because once I got them on paper, it relieved the pressure from within.  This was an avenue I could release some stress even though there were times I was too tired to think much less write.

It was comparable to a healing process for me to get my thoughts on paper and not carry them inside me.  Some people will use a legal size note book, composition book or a fancy pretty  journal you can purchase at a book store in different sizes.  In this case presentation isn’t everything.  Use what is more convenient for you at the time.  No one is going to read it unless you allow them to.  Do you remember the diaries we used to use when we were younger and we wrote our teenage thoughts in this book?  The only difference now is that we are a little older and our thoughts are more adult in nature.

Choose your attitude

Monday, October 5th, 2009

Choosing your Attitude is one of the most critical aspects of being on this incredible journey. Look for the things you can control and forget the rest. You cannot control the weather nor the diagnosis but you can control your thoughts.

Be grateful for your friends and family members realizing they are going to help you during this difficult time. Remember it is a position of honor to be asked for help This is going to be a team effort so why try to do it all. As Peggy Collins, author and professional speaker, says, “by doing it all, it will do you in.“ You cannot be the best advocate and caregiver for your loved one if you are exhausted and tired all the time.

One of the things I did was review the talents of my friends and made assignments accordingly. I had a friend who loved to cook, so I asked them to bring a casserole over for a particular evening. One of my friends took it upon herself to buy me stamps and thank you notes. So it truly is a team effort and it is not a sign of weakness to ask for help; it is a sign of strength.

The Beginning

Thursday, October 1st, 2009

My husband, Gene, had been having severe bouts of hiccups whenever he ate. He finally had an endoscopy and was diagnosed with esophageal cancer in April 2003. We thought this couldn’t happen to us because no one in Gene’s family had ever had cancer.

Our first round of treatment included five weeks of radiation and chemotherapy. Halfway into our ordeal, Gene began dropping weight; it was difficult for him to eat and he just didn’t have an appetite. I cooked myself into oblivion. Nothing worked; food was not appealing to Gene. I felt I had failed my loved one. He wasn’t eating though he knew he had to eat for energy. We tried Ensure, Glucerna and Boost to gain weight, all to no avail. Finally, we discovered Frusion from Dannon, a liquid yogurt he could tolerate and drink without too much fuss. Mission accomplished. Whew!

As we continued on this path, there were numerous trips to doctors’ offices, and there were trips to the emergency room due to dehydration, low blood count and fatigue. At times I didn’t know if I would make it to the next day. Gene’s surgery was in July of 2003 and was a huge success.  He made it through the 9 ½ hour ordeal with flying colors, but his caregiver was running on adrenaline. Gene was released after 2 ½ weeks from the hospital to come home. He was given a clean bill of health. He was cancer-FREE!!

By November of 2003 Gene was eating on his own. He had lost 30 pounds and wasn’t putting any of it back on. (It is amazing how those fat calories found me instead of him!) Nothing tasted good but he continued to have a great attitude and tried different concoctions to appease me.

Digestive problems began again to plague Gene in early 2004. We sought consultation to find this was “normal” and not to worry. Finally in April 2004 a CAT scan and an MRI were scheduled to see what was happening. They discovered the cancer had returned with a vengeance. Gene had lesions in his liver, behind his stomach, on the adrenal gland and two spots on the frontal lobe of his brain. How could this happen? We had received a clean bill of health in October 2003! We were devastated. Our second round of radiation and chemotherapy began. But this time, I knew I needed help. I did not have the energy or wherewithal to deal with this alone.

I called Baylor University Medical Center at Dallas to get the schedule for their support group for caregivers only to learn Baylor did not offer such a program. I went to several Baylor staffers with topics in hand asking for assistance. The more information I could garner, the better the caregiver and advocate I could be for Gene. Baylor listened! The support group for family and friends of cancer patients began in October 2004. This group became my therapy; and it carried me through some very tough times.

The more involved I became with Gene’s medical team, the better caregiver AND advocate I became. One of life’s nuggets I learned was to listen to my intuition: 99% of the time, I was right. I knew this patient better than the doctor of record. I had to be aggressive and recommend changes especially when the medicine was not working properly or when fatigue became unbearable. This was a hard lesson. I do not have a medical background…merely a degree in the school of hard knocks.

Unfortunately, my precious Gene lost his courageous battle with cancer November 2004.  Yet, his spirit continues to shine because the support group for family and friends is paramount. My promise to Gene is to continue with the support group because it is so vital for the caregiver’s well being. I was just like you when our journey began in April 2003—scared of what was happening and afraid of the unknown. However, I have gained strength while helping others cope with this roller coaster ride. We had angels guiding us and helping us cope throughout this journey — the friendly valet guys, the upbeat receptionists, our medical team, the compassionate nurses and even the mail room guys — all greeted us warmly and made us an extended family member of Baylor.