Caregivers – a world of difference

If you’re new to cancer or serious illness you may hear a new term, caregiver.  Caregivers can come in many forms.  They can be a friend, a spouse, a parent and even a child.

My primary caregivers were my husband and my daughter.  They were both amazing.  They helped me with anything and everything from sharing kind words to bringing me water to cooking meals and helping me out of bed when I needed it.    Besides helping me with the daily tasks my husband went with me to doctor visits and chemo appointments.  He helped make me as comfortable as possible during my treatments and gave me words of encouragement that kept me going, he was my cheerleader!

My daughter was eight years old when I was first diagnosed.  I wasn’t sure how she would respond but she blew me away.  She did have a few moments where she wondered what it meant for her to have a mom battling breast cancer but her primary concern was for me.  She worried for my comfort, she made sure I had enough to drink, she tried to find something for me to watch on TV.   She helped me pick out clothes and put on make-up to help conceal the yellow skin and missing hair.  But what helped me the most was the love she showered on me each and every day.  It helped me remember what I was fighting for.  I was fighting to be her mother,  I was fighting to see her grow up, graduate high school and college.  I was fighting to be there for her when she needed me.

I know not everyone is lucky enough to have a caregiver, especially not two.  But if you know someone that is fighting a serious illness, ask yourself; what simple, little thing can you do to make life just a little more pleasant for them?

Healing – an on-going process

Healing is a process, a process that can take months or even years.  As I mentioned in an earlier post I’m still healing from my first surgery almost two years later.   Physical healing is dependent upon many factors; the procedure, your overall health, how hard you’re willing to push yourself, even your attitude can play a big role.  Of the two mastectomies I’ve had, the modified radical mastectomy has been the most challenging to recover from.  I didn’t realize how damaging a modified radical could be until I had the surgery.  They not only remove the breast tissue but also most of the lymph nodes under the arm and the lining of the pectoralis major (the large chest muscle).  Because I lost so many lymph nodes, 24 in all, my body had a hard time processing the extra fluid that resulted from the wound.  I needed to be diligent emptying the drains and clearing the lines to try to keep up with the fluid.  I was so eager to have the drains removed that I feel like I influenced my doctor to remove them a little too early.  The result was that I blew up like a balloon and had to go in to have the surgeon use a needle to drain the excess fluid that built up a week later.

I also had to be faithful with my exercises.  My under arm was very sore and I could barely lift my arm to get dressed.  I started stretching as soon as the doctor gave me permission.  The first and easiest exercise was just walking my hand up a wall as far as I could, pushing a little further each day.  I did that at least three times a day.   Once it healed a little, and I had permission from my doctor, I began driving.   Just turning the steering wheel was a workout.   The more I used my arm, the better it felt.  It did take several weeks and I had to be careful not to push it too far but I was successful in regaining most of my motion.

The emotional healing is another story.  It took several months to see that I was still the same person.  I realized that being diagnosed with breast cancer and having a breast removed was not the end of the world.  The chemo and radiation also complicated things but I’ll go into that at a later date.  Healing is a personal journey.  You need to prioritize it any way you can and know that you’re not alone.  There are thousands of women who have walked the same path.

Surgery – first step of the cure

For me, surgery was the first step of the cure.  Having never had any major surgery it was a scary prospect.  The first mastectomy I had was a modified radical.  This meant that the surgeon would be taking lymph nodes.  He planned to take 4 or 5 nodes but once he was in there he felt he needed to take more, it turned out to be 24 in all.  The nodes were enlarged and he was worried that they were cancerous.  Having dimpling of the skin, a tumor that looked to be about 2 cm and was less than a millimeter from the chest wall gave him reason to believe the cancer could have metastasized into the lymph nodes.   Fortunately for me, all 24 nodes were clear.  But this made for a slow and sometimes painful recovery. It’s been almost two years since the first surgery and I’m still healing.

The second mastectomy was almost a year to the day from the first, it was a Simple Mastectomy.  This time the surgeon only took one lymph node, which was clear of cancer.   The complication with the second surgery, I believe, happened when I was coming off the anesthesia.  When I woke up the nurse was saying she was trying to get my blood pressure down, all I can remember is that one of the numbers was over 200.  Later that day I started to swell up in the shoulder near the incision.  The nurse that night kept putting ice on it saying we needed to get the swelling down.  I told her it wasn’t helping, I was blowing up like a balloon.  One of my drains had stopped flowing several hours earlier which I later realized was a tell-tale sign.  The next morning the surgeon came in asking if I was ready to go home.  I said I am, but I wasn’t sure he would be when he looked at my shoulder.  As soon as he heard what was happening he called the nurses in and they unwrapped me as fast as they could, took my breakfast away and I was told I would be going back in for surgery as soon as they could find a slot.  It turned out to be a hematoma, a very large one.  The surgeon went in, cleaned up the bleeding and I was sent me home the next day.

The second mastectomy healed much faster, I had lymph nodes to process the excess fluid which made a big difference.  I still have a pouch of fluid from the first mastectomy and lymphedema in my arm.  I’m still working to reduce the fluid but it may be a battle I fight for a long time, maybe even a lifetime. I do feel surgery was necessary in my case.  I’m not sure how long it would have taken for my cancer to spread but I feel confident that it would have, especially given that I had new cancer appear the second year.  Surgery is not something to take lightly but until scientists come up with a real cure I see it as viable solution.

Resources – too many to count

There are so many sources of information for cancer patients it’s hard to chose just one to recommend.  A few of the resources I found helpful were the American Cancer Society, National Cancer Institute, the hospital where I had surgery, my cancer center where I was being treated, and a program called Bag It! .

The American Cancer Society was helpful in providing the opportunity to call and discuss my diagnosis and possible treatment.  I was able to compare what my doctors were recommending and what the national standard of care was.  It was very reassuring to know I was getting the recommended treatment for my type and stage of cancer.  I also enjoy their annual community event, Relay for Life.  I felt honored and understood at the event and they also showed appreciation for my Care Givers.  I liked that my whole family could participate and that it gave them an outlet for their emotions.  The American Cancer Society is a volunteer organization and their services pop-up almost everywhere.   An amazing organization!  Find them at Cancer.org

The National Cancer Institute is also a great source for information about all types of cancer.  You can also find out about the latest clinical trials, cancer statistics, research and funding and just about anything you’d like to know about cancer.  I found their material very comprehensive, it helped me to understand my types of cancer and how they affected my body.  I also found it very comforting that our government was so involved with cancer research.  I think we could use more funding in research, I’d love to find a real cure before my daughter may be faced with it, but I was glad to see more involvement than I knew about.  Visit their site at Cancer.gov.

If you require surgery your hospital will likely have information for you regarding your cancer.  They might also have other items made by volunteers that may help you.  My hospital gave me a little apron to hold my drainage bottles.  This came in very handy after surgery, I wore the first one out!

DrainApron

My cancer center had printed material too (you will receive more brochures and pamphlets than you can imagine).  More valuable though were the donations and free classes that were offered from various volunteer groups including the American Cancer Society.  Look Good, Feel Better is a class they offer to chemo patients.  You’re given a small makeup bag and tips for applying make up when you’re showing the side affects of chemo such as hair loss and yellowish skin tone.   They also offer wigs to patients that want one.

Another source of information came from a friend.  She gave me a bag of materials from a group called BAG IT!  It was a bag filled with pamphlets and a notebook to organize and document your treatments and doctor visits.  For more information on the program visit www.bagit4u.org.

These are just a few of the many sources of information available to cancer patients.   Look around and find the sources that help you the most.

 

Diagnosis – waiting Is

Waiting for your diagnosis can be excruciating and the anxiety can feel like it’s going to kill you.  It’s hard to understand how no one seems to have the sense of urgency that you do.  No one seems to understand the importance of your potential diagnosis.  Expect to wait.  Some things will move very quickly, but others will seem to take forever.  I found the best way to use my time was to do research and formulate questions.  I made lists of questions for my doctors.  One list for a positive diagnosis and a second list for negative results.  I also tried not to dwell on the possibilities because without the facts the worrying does no good.  I cleaned house and did laundry just in case, I tried to prepare myself for possible surgery and down time.   I spent time with my family, enjoyed meals together and discussed things that we all felt good about like past outings and funny things that had happened with each other or our pets.  I talked to family and friends, I shared my anxiety with them and they shared similar experiences.  Sometimes it helps to know you’re not alone and others have felt the same way as you at one time or another.  You will get the results, once you do you will need to be ready to make choices.  Remember they are choices for you to make, not requirements, but choices that you need to be informed about and ready to act on.