Setting Boundries

Amy is a minister’s wife and up until she received her cancer diagnosis, was a Mary Kay director.  Because of her ‘people’ personality, she has many friends who know and love her.  She has always been easily accessible by phone and has always welcomed people into her home.

However, when she received her cancer diagnosis, I witnessed a change in her accessibility which I initially respected, but have come to admire.  Amy decided that she could not repeatedly talk to everyone who called about her cancer.  She could not welcome every guest who wanted to drop by to express their concern.   She knew that her number one priority was to beat cancer and conserving her physical and emotional strength is a necessary part of her recovery.

Therefore she seldom answers the phone or doorbell.  She answers emails when she feels like it, and she keeps a journal on caringbridge.com.  If a church member wanted to support Amy and Brent with food, they coordinated it with one person rather that just dropping it by the house.

Let me be clear here. It is not that Amy is shutting people out of her life.  She does talk to people, but she does it on her own terms, i.e., when she has the strength, or when it is convenient.   She keeps people up to date on how she is feeling and how her treatment is going by way of  journal entries.  Amy is still just as much a people person as before, and she totally appreciates all the cards, emails, comments left on Caringbridge, and so many other ways support and love is shown to her.

I appreciate  Amy setting this type of example for us.  We do not have to be a ’slave’ to the telephone and doorbell.  We do not have to let it drain our emotional and physical strength.  We can choose to walk down the path of cancer or serious illness at least to some extent on our own terms.  We can choose to do what is best for us.

You go, Amy!

Families Who Have Cancer

You know them.  I know them.  Perhaps your family is one of them.  Families who have been touched by cancer. I think that having small children would make having cancer more difficult.  Not only is just doing the every day tasks more difficult, but the emotional facet of perhaps not seeing your children grow up must be factored into the stress of the situation.

Of course, that is not to say that having cancer is any easier for those of us who have grown children.  There are always grandchildren we would like to see grow into adulthood.  Yes.  Cancer is difficult for everyone.

We are not given a choice in life about what diseases we will and won’t have.  Our genetics and lifestyle can and will influence our health, but for the most part we just don’t get to choose.  Famlies are part of the illness and the recovery.

As we pray for the folks in our lives who are will, don’t forget to pray for their families.

Don, Jo Ann, and Non Hodgkins Lymphoma

Don and Jo Ann are precious dear friends.  They are members of my Sunday School Class, and have been examples of strength, courage, and faith as they once again journey down the cancer path.

Several years ago, I remember that JoAnn had breast cancer.  It was found early.  She had a lumpectomy and was treated with medication to prevent its return.  Her cancer has been in remission since then.  In fact, she may be classified as cured.

Don and Jo Ann watched a grandson, Sage, fight and lose his battle with rhabdomyosarcoma, a fast growing cancer in children.  At the age of 12, Sage was told, after enduring cancer treatment, that nothing more could be done.  During his remaining two or three weeks of life, Sage showed strength, faith, and grace that could only have come from God.   Yes, Sage may have lost his battle with cancer, but he was victorious in the way he faced death, inspiring everyone who knew him.

Don has battled Non Hodgkins Lymphoma three times.  This form of cancer is treatable, but not curable.  Don has been a patient at MD Anderson Hospital in Houston, and the two of them have made countless trips there.

Lymphoma first appeared in 1997,  in a testicle. It was small, the size of a BB. In 2003 it returned in the form of a volleyball sized mass around Don’s right kidney.  After four chemo treatments, this cancer when into remission.  Don was placed in a stem cell transplant clinical study.  His blood was enriched with neuprogin injections and then his own stem cells were harvested.  After another procedure in which they ‘burned him out’, he was reinjected with his own stem cells.

Don’s remission this time lasted only 3 1/2 years, and returned in Nov, 2007,  in his lower abdomen.   Once again the cancer has been put in remission by chemo treatments, and there is a possibility that he could have another stem cell treatment.  This time, however, the cells would come from Don’s brother who is a perfect match.  Don may decide to wait on the stem cell treatment, because hopefully this cancer treatment will keep the lymphoma in remission for a long time, and there is always a danger of rejection with stem cells even from a perfect match.

Don has one more chemo treatment to take which is basically an ‘insurance’ treatment, just in case the scans missed some malignant cells.

The challenge for Don with this recurrance is that his body is not recovering from the chemo treatments as quickly as it once did.  His blood counts and platelet counts have been very low, and they have been very slow to come up.  Normal platelet counts are from 140,000 to 440,000.  Don’s counts have been as low as 4,000.  He has had a total of 29 transfusions of blood and platelets since Dec, 2007.  In fact, his last treatment is being delayed due to low platelet counts.

It is so amazing to watch the faith and courage they both display to all of us. Even when blood tests don’t come back with the news they hoped for and prayed for, they know that God has all things in His hands, and they rest in His Peace and Comfort.  Oh, yes.  They have had a wonderful sense of humor about all of this also.  I know that has helped.

Please pray for Don.  Pray that his current state of remission will last, that his cancer will not return.  Pray that his blood counts and platelet counts will come up so that he can have his last chemo treatment.

Pray for Jo Ann. She is truly an amazing person and I consider it an honor to know her.  I know that she has times of exhaustion, frustration, and fear, but she is so very in tune with God that His Strength and His Grace meets her needs day by day.  Those of you who have been caregivers know what she needs and you know how to pray for her.  Please do so.

Kenny: “God is infinitely good.”

I received this email last night giving the latest information on Kenny and his response to an experimental cancer treatment using a drug called Reolysin. Here is a portion of his email:

Helen and I are so thankful about the way things have gone for us. We are so grateful for everyone’s prayers and support. We would not be where we are today without all of you. God is infinitely good.

The sponsoring pharmaceutical (Oncolytics) has approved extending treatments “indefinitely”. As long as I tolerate it well and I continue to receive benefit from the drug (as measured by CT scans), and God leads that way, we will continue to go to San Antonio about every four weeks for another round.

There is a new article that was published in the University of Texas Health Science Center San Antonio’s (of which CTRC is a part) news publication. The link:

http://www.uthscsa.edu/hscnews/singleformat.asp?newID=2663

If you haven’t seen me on YouTube yet, where have you been? You can find me at:

http://www.youtube.com/watch?v=53YlBK4XNfc

If you are interested in checking out press releases from Oncolytics Biotech (the makers of the experimental drug), you can find them at:

http://www.integratir.com/newsrelease.asp?ticker=t.onc

Some of you may like to go to the website of the clinic where we go for treatment:

http://ctrc.uthscsa.edu/wps/portal

We are totally in awe of God’s grace in our lives and are so thankful for all He has done and is going to do.”

I spoke with Kenny just before writing this post. We talked about the emotional roller coaster that we ride when traveling down the cancer path. Kenny mentioned that your emotions can be totally different when you are waiting for the results of a test than they are after you receive the results a few minutes later. He also mentioned the ‘peace that passes all understanding’ that can only come from God.

Yes. God is blessing Kenney, but because of Kenny, God is also blessing us.

Updates on Wayne

It has been a while since I shared with you any news about Wayne.  As you may remember from previous posts, he is my Sunday School teacher and deacon in our church.  He was diagnosed with pancreatic cancer several months ago and has been undergoing chemotherapy and radiation treatments since then.

His radiation treatments are completed as are his first round of chemotherapy.   He is currently taking his second round which began about three ago.  He seems to be feeling better and is even gaining back some of the weight he had lost.  Low white cell and platelet counts are a problem and have delayed some of his treatments.

He hasn’t had any new scans since this round of chemo has begun so we don’t know what the cancer is doing, but we are praying that it is shrinking and that Wayne will be restored to health.

He continues to teach Sunday School, sing in the church choir and is even helping to build the new addition to our church.  We are so grateful that he feels well enough to do those things

Wayne and his wife, Glynn, are such an inspiration and blessing to each of us.  We pray for God’s hand to continue to be on them, comforting, strengthening, guiding, and protecting them as they travel down this very difficult path.

Not “Cancer Survivor”, but “Cancer Warrior”

    When my grandmother, Mom, was in the hospital by back in September and October, I met a lady who defines the term “Cancer Warrior”.  I don’t remember her name or any specifics about where she lives.  However, I did get permission to write about her in my blog.  For whatever reason, I just had not written about her until now.

This amazing woman has gone to battle with cancer 39 times and each time has been victorious!  I can not give you the info about all the different types of cancer she has had, and undoubtedly many of those cancers are related.  I learned about her when I met her daughter in the hospital cafeteria, and then I visited her in her hospital room.

I found her to be a strong spirited woman with a quick smile and a hearty laugh.  Her ready sense of humor was immediately evident and has no doubt contributed to her ability to deal with the stress of having cancer time after time.  She also showed strength of spirit and determination to live and love life to its fullest.  There was not a hint of self pity in her speech.  Instead she had a spirit of thankfulness and gratitude for every day she lived.  She was totally amazing.

Her husband was equally amazing.  He also had  a great sense of humor.  However, what I saw in him was a determination that she would not die from cancer.  He was her support and sometimes her advocate.  He researched her cancers and became a source of knowledge for her.  His own health problems did not take away his attention from her.  However, I did not get any indication that he was neglecting his own health at all.  I think he realized that he could best help his wife, if he were healthy.

Meeting this family was definitely a God moment for me.  I don’t know where they are at this time, and as I mentioned above, I don’t remember their names, but they impacted my life and gave me a new understanding of what it means to go to battle with this disease we call Cancer.

Strength For the Day

When you are the caretaker of someone with a long term or perhaps even terminal illness, how do you ‘keep going’? How do you, day after day, do all the things that need to be done? Unless you have walked in those shoes, you don’t know how difficult it is. You can’t imagine how intense the physical and emotional fatigue is when there is no relief and seemingly no end in sight.

Some of you reading this blog are facing this type of situation. Perhaps you are in the midst of such a storm in your life, or perhaps you have finally reached the light at the end of your dark tunnel. If so, then you also have your words of wisdom, things you have learned or allowed God to teach you. Be willing to share your wisdom with other caretakers in your ‘circle of influence’.

God’s Grace is sufficient for the day. That is all we need. His Grace for today. His strength, His Wisdom, His Comfort, His Peace, just for today. Tomorrow will take care of itself. There will be a day when life begins to return to normal and when the physical and emotional stress is less.

Taking care of parents with cancer is not unusual. Many many people have been afflicted with this disease. What was unusual for my sisters and I was that both our parents had stage 4 cancer at the same time. They were both intensely ill and required a tremendous amount of attention. It was thus far in my life, the most difficult period of physical and emotional stress I have every endured.

It was by allowing God to be for us what we needed each day, that we found this time, however difficult it was, to be filled with moments of sweetness and love, providing us with last experiences with our parents that we will cherish for the rest of our lives. Only God could do that.

He can do the same for you. Allow Him to be for you what you need for the day.

Kay

Cancer and terminal illness touches all our lives.  We all have friends and/or family who is or has been afflicted with serious illness.  As Dr. Phil said, “When one family memberhas cancer, the entire family has  cancer.”  This also applies to other terminal illnesses  as well.  Not just cancer.

Kay is a relatively young woman, not yet 50. She is married and has two sons ages 19 and 21, I believe. Oh, yes.  She also has a daughter who is grown and away from home.  She is a friend of my and has been for several years.  Her parents attend my church.

About eight months ago, I believe,  she was diagnosed with an aggressive form  of bladder cancer.  This particular kind of cancer is rare in women.  It usually appears in older men, her doctor told her.

Shortly after her diagnosis her bladder was removed and she began radiation and chemotherapy.  About a month ago she had another surgery to rebuild a bladder for her.  During this surgery several things were removed, ovaries, uterus, more lymph nodes, etc.  When the pathology report came back, Kay and her family learned that cancer cells were found in every thing that was taken out.  Not a happy day.

After speaking with Kay’s father I learned that  the doctors are saying that Kay may have 2 years to live.  That is not long, my friends. If you had two years to live, what would you do?  What things would you need to get in order?  How would you help your children prepare for the time when death happens?  How would you prepare them for life afterwards, without a mother?

Kay is being very open about her situation.  I understand she is taking radiation treatments, but not chemo.  Please pray for her. God has become very real in her life through this illness.  Pray for her husband and children as they share her experience.  Pray for her parents who are already grieving, but are looking to God for comfort.

Teach Your Children How to Make Good Decisions

    Why?  Because one day they will be making decisions for you.  Yes.  That is the reality of life.  If your children outlive you, then one day they will begin to make decisions on your behalf.

For some families it happens gradually.  The parents slowly lose their ability to decide the large, then the small day to day dilemmas.   For other families, this transition is almost shockingly quick.  Seemingly one day the parents are self-sufficient and handling life as it comes, and the next they need help making a grocery list.

This became reality for me when my parents had cancer.  I suddenly found myself making decisions that they had made for themselve just days earlier.  Big Decisions.  Small Decisions.   Decisions that would be difficult for me to make for myself, and here I am making those decisions for my parents.

It was a shock to realize that my parents were no longer capable of handling life on their own and would probably never be able to again.  Coming quickly on the heels of this shocking realization was a second equally shocking one.

One day my children will be making decisions for me. Big decisions. Small decisions. One day I will no longer be capable of handling life on my own.   I am not being pessimistic, just realistic.

Therefore, teaching your children how to make good decisions is not only in their best interest, it is in yours as well!

The Pendulum Swing of Emotions

Think of the swing of a pendulum. Its swing in one direction is equal or almost equal to the swing in the other. Our emotions during a time of crisis such as a terminal illness swing back and forth from despair to elation, depending on the events of the moment.

Last week when Wayne and Glynn were facing a series of scans and tests which would show whether or not Wayne’s pancreatic cancer was responding to the chemotherapy and radiation treatments. They were scared, nervous, emotional, worried, and any other negative emotion you can name. The morning they left to go to Dallas to have these tests run, Wayne looked bad. He was weak. He was pale. His eyes filled and overflowed with tears frequently.

Once they received the results of the tests and learned that the cancer had not spread, their pendulum of emotions swung back to the other side. The degree to which they were worried corresponded directly to the degree to which they were excited. The next time I saw Wayne, he had a big smile on his face. He no longer looked pale and he was about to eat a big plate of food.

Whenever you are in the midst of physical trauma such as this, your emotions will experience the same trauma. You may be very sad, filled with despair and without hope, and then something positive will happen. It doesn’t have to be something big. It may be a small as one meal that tasted good, or a test that came back with good results or at least no bad results. Then your emotions will ‘latch on’ to that one positive thing, and immediately swing to the other side of the pendulum.

I remember thinking about my emotions when my parents were sick. At that time I compared my emotions to a roller coaster ride which is not an inaccurate description. I remember saying that I had experienced every emotion you could name while Mother and Daddy were sick, especially during the 3 months when Daddy was in the hospital, with Mother also being in the hospital 5 weeks during that time. It was horrible.

Once we understand that these emotions will be there, we can not fight them, but instead seek to control them. It was during those times that I had ’scheduled cries’, moments when I could let my sadness, despair, frustration, anger, hopelessness, rise to the top of my mind and heart and flow out the tear ducts in my eyes. By giving my emotions space to be in control for a while, then once I finished crying, I could then control my emotions, for a while at least.

Your emotions are going to be part of what you are enduring. You are going to feel everything you are going to feel on both sides of the pendulum. You can’t stop it. Instead you should expect it and accept it. Then you can control it.

And oh, yes, get all the ‘mileage’ you can out of good news. Yep. Let the good news carry you as far as possible. Smile. Laugh. Tell it to everyone.