The Hospice Path, Once Again

The doctors at the VA in Albuquerque decided that, considering the gravity of Ronnie’s health, and the decisions I had made regarding his treatment, the hospice unit would be an appropriate placement for him. I agreed.

So here I go again. Once again completing the paperwork, talking to the nurses, meeting the chaplain, and on and on.

My emotions at this point were just whirling. I was feeling a great deal of grief, because I knew my uncle’s life as he had been living it was over. I felt guilty because I was the one who made the decisions that took him from his home. I felt grateful and thankful because things had worked out so that I could be close to him. I felt some anger at Ronnie because his decision to smoke all his life had resulted in his body being consumed with cancer. Yes, I felt a complete range of emotions with clear reasons that I could articulate about each one.

Having been down this path though has helped me put whatever I am feeling into perspective. I am not the person in the midst of this crisis. Ronnie is. My feelings are secondary to his situation. He is the person who is ill, facing pain and death. My life will go on. His will not.

 

Here He Comes!

Some moments you never forget. The image of the elevator doors opening and my Uncle Ronnie just “appearing” there, lying on a gurney wearing his signature plaid shirt, his worn out cowboy hat and boots, will be forever a clear memory in my mind and heart.

it took about a week for all the paperwork to be completed, but the VA expedited my request to have Ronnie transferred to a VA near me.  They arranged for him to be flown via small military jet to my location. Ronnie had been through a lot, physically and emotionally, but that flight was an exciting moment for him. I was impressed with all the VA had done.

When he arrived on the VA floor that would be his home for the rest of his days, I was the first person he saw. All the emotions of the last two weeks came flooding over Ronnie, and he began to cry once again.

A new journey down the now familiar cancer path had begun once again.

Hospice Foundation of America

Several months ago I was honored to be contacted by the Hospice Foundation of America. After reading some of my posts about my family’s experiences with feeding tubes and decisions involved with that issue, the HFA wanted to talk to me. They asked me to be part of a DVD they produce annually which provides training for hospice clinicians.
The interview lasted about two and a half hours, and I was completely emotionally and mentally drained at the end. I shared the entire story of my parent’s cancer, and discussed my mother’s feeding tube, as well as my father-in-law’s feeding tube. The filming was professionally done and I was respectfully treated.
A few weeks ago I received my copy of the DVD, and was very pleased with the way it ‘turned out’. It was well designed and professionally edited. My original interview was condensed and inserted into several places in the presentation,
I would like to thank the Hospice Foundation of America for including me in this project. It was a privilege and an honor. Perhaps some of the things I said will be helpful in the way clinicians work with hospice families as they work through the decisions involved with feeding tubes.

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.