Breast Cancer Entry Twenty-Five
The Caregivers
Every week I show up for chemo. This endless process! My chemo is supposed to continue until next summer. Give me strength!
I look around at the people. There are the “regulars”; those that come the same time I do every week. We are friendly and ask each other how we are doing and encourage each other. We wave hello and good bye.
On this day I really pay attention to the other people. Not the patients, like myself, or the medical staff; but the “caregivers” that accompany the patients to these treatments; people like my husband, Monty; who sits by my side week after week, and month after month while I listen to the babble of hopeless doctors and fill my veins with toxins. We do it because we believe it is part of the cure and a necessary part of my fight for life.
These caregivers sit there while someone they love is suffering. Many of us have lost our beautiful hair and skin and vibrant personalities. We all hope it’s temporary and so we endure it together. But these caregivers know there is little they can do to ward off the suffering. Yet they show up again and again, and hold our hands and fetch us water and unplug our machines so we can shuffle to the bathroom occasionally. I imagine they do what Monty does at home and pick up prescriptions, do the shopping, cook and clean. And I imagine they never complain either.
I think about Monty. He runs a big company and has so much responsibility. Yet he comes home every night and hollers “Hey, it’s your only friend!” It’s a joke with us since I am rather isolated much of the time due to dangerous blood counts, so I wait for him to come home and be my friend. Every night we play Settlers of Katan/Cities and Knights and every night he beats me – OK, sometimes I win, but not enough.
I have had to force him to play golf on Friday afternoons, but he inevitable calls me from the ninth hole just to see how I am.
Friends and family shower me with cards, gifts, calls and e-mails (oh that I had the wits to respond! Someday…) They have come from all over the country to share a treatment with me, lift my spirits and share some special moments; Vicki from Hawaii, Suze from New Jersey, Gayle from California, Jean from Texas, and so on. Next month an old friend from Minnesota is expected and the stream of loving people will continue I am sure. I feel completely loved and cared for, and abundantly nurtured. I couldn’t deserve this much care!
But I think about these cancer patient caregivers – these people that are in the trenches with us 24 hours a day. They are care worn for sure. Their own lives are threatened by the possibility of loosing someone they love and care about. Who is showering them with love and support? They all look tired to me. They are juggling work, home chores, family needs, and emotional issues too.
When I sleep I sometimes feel Monty pulling my little sleeping cap (not attractive!) back down over my head (it can get so cold at night without hair!), or patting me on the arm when he turns over. He has yet to leave a room without turning to me and asking if there is anything I need.
Every now and then I wake up in the night in pain. It hurts a lot sometimes. I get up, take a pill and go back to bed to wait for the medicine to kick in. In the meantime I often cry and let go of some of the stress. I try to be very quiet and not disturb Monty, but he sleeps lighter these days; and if he feels a quiver from me he will reach over and gather me up and let me cry more earnestly for a few minutes (Why is it when someone reaches out to you the flood gates open?). So we have this ritual of caring; of hanging on to each other in the middle of the painful nights, and we rarely speak. It just happens and we know when it is over, and we both sleep better, and tomorrow is a new day.
So tonight I am going to make a lovely dinner for us. I don’t care if it takes all day. I want to do something nurturing for Monty. He gives and gives, like all those other people that show up with the other cancer patients in the chemo lab. He never complains or asks for anything for himself. He has shown up for my hour of need as well as any man could. I do feel loved. My cup runneth over actually. If love can heal a person than I believe I can get well.
I have a prayer in my heart that caregivers everywhere will be loved and strengthened.
They are angels on earth.
July 7, 2007
Comment by Debby
I cried when I read this because I was my sister Jeanettes caregiver along with her husband. I worked and cared for my sister and I knew it was breaking her heart watching me. She had told me not to cry because she didn’t want to cry, so I tried to be strong and never cry in front of her. It was absoutely the hardest thing I ever did. I would of traded lifes with her in a second. I begged god to take me instead. But we caregivers would not trade being there for with our loved ones for nothing in the world. My sisters experience was so different than yours. Everyone stayed away. They said it was too hard on them to see her. I on the other hand felt it was too hard to not to see her. She told me she felt abandoned and I told her “so do I” She told me I was her angel and she was so lucky to have me as a sister. I felt lucky to have her. She taught me so much and I feel if I can help anyone I will again be there to help. In reading your blog I wondered if she felt like you do. I think it’s wonderful that your honey is so good. My sisters husband was truely wonderful too, and we are the best of friends to this day.
Posted on September 7th, 2007 at 8:27 pm
Comment by Amy Douglas
First of all, I would like to thank you for sharing your story with the rest of the world. I am inspired by your courage and strength in your epic battle.
I also have an illness. Quite severe, but not as life-threating as yours. I suffer from Bi-Polar Disorder. I have had several breakdowns and attempted suicide several times over the course of my 28 years of life. I know all too well about depression.
I have lost a Grandma recently to cancer (a different kind than yours) so know that my thoughts and prayers are with you and your family in this most difficult time.
What truly struck me in all of this was how your dreams of the wolves and the pearls that your family has given you. I have had POWERFUL dreams like that as well. I like to think that they are devinely inspired.
Your husband sounds like a lovely man, and I smiled when I read about him, because he reminds me of my own husband, Kevin.
Caregivers do not get enough attention and love. Thank you for speaking this encouraging word for them, as well as us patients.
Know that I will continually check back to see how you are doing, and I will pray for you and your family.
Take care and God Bless!
Amy Douglas
Posted on September 8th, 2007 at 9:02 pm
Comment by Karen Medlin
Dear Julia,
You are a beautiful brave woman, inside and out. I don’t know if you remember me, but I have taken several of your classes in the past. I had not been to your website in a while, so I was surprised to hear you have breast cancer. I am so sorry, my dear.
I too joined the sisterhood of women who have breast cancer this August. They are going to do chemo first and then surgery and probably radiation, maybe more. The one single thought that keeps helping me is all that I am going through is not my enemy, it is KILLING my enemy.
I, too, have amazed at what a unique experience this has been, that no one can really understand unless they have traveled that road.
One of the most gratifying things is to watch the support groups spring up around you. Many people don’t know what quite to do or say, but they are all there, because they love you and care about you.
This weekend I will lose my hair. It is already coming out in clumps, so the razor is next.
You hang in there my dear. I know much love and prayers are coming your way, mine included.
Love,
Karen
Posted on September 16th, 2007 at 11:27 am
Comment by Dawn Lippincott
I’m in tears and want to thank you for sharing your story. I just want you to know your not alone and even people you dont know love and pray for you and your family! I admire your strength and courage as i often worry about illness myself. There is HOPE and i DO believe you will be well and healthy again. Keep doing what your doing and stay positive as sometimes we get so bogged down with the worry and pain, i usually lay down and only repeat in my mind “let go and let God” it has gotten my thru every illness i have gone trough and alot of mental and emotional periods in my life. God doesn’t give us anything we can’t endure and your so positivly strong, you will WIN this fight and I will be here praying for you and running on your team!! God Bless and Big Hugs! Dawn
Posted on September 23rd, 2007 at 11:51 pm
Comment by Michelle Daschel
Julia - I met you at CHA before you started chemo. I remember your beautiful hair. Julia, you are beautiful with and without hair. When I first visted your website and learned you had cancer (several months ago) I cried. As I read your update tonight, I found myself again in tears. My mom faced cancer many years ago and I remember how lovingly my father cared for her. Monty is a wonderful man. My heart goes out to you both.
Posted on September 30th, 2007 at 7:34 pm
Comment by Kaylene Keck
Hello Julia,
Do you remember me? It has been 5 years ago that I was in England with you & Lyn. It was a great trip for me - thank you for letting me tag along. Reading your blog reminds me so much of what my daughter, Koryn and I experienced together. It has been 6 years now since she got to go home. You will be in my prayers now. I know what you are fighting a crazy battle - you get to learn so, so much. Love you, mean it, bye
Kaylene
Posted on October 11th, 2007 at 11:08 pm
Comment by Cheyenne Renard
Dearest Julia, I just re-read your story of your love Monty and being a caregiver I am a ca survivor and I remember going to Chemo I was so mad inside and defiant. I know you are a strong woman and Ca doesnt know who it is dealing with one tough broad. My heart goes out to you and to your love Monty i have also been a caregiver and i would do it again in a second. Know that Monty would not choose to be any where but by your side and you are still a very beautiful woman and attractive, so dont think that your not. You are fortunite to have so many that love and care for you because so many people dont want to be around some one with Ca and they stay away so consider your self lucky if that is a good word I would love to come and see you i live in Nevada a few hrs away from SLC i am a mixed media artist and an altered woman at that The craft world is such a loving group of people but if you were sick any where i would still come and visit I am just that kind of person and i do what i would want some one to do for me. I believe there is a correct way and the wrong way i do what god would do and that is to help some one in need so that you can help some one one day your self we always teach what we are suppost to learn and visa versa so know that you would do the same if you were me or Monty you would be there for him 110% like he is for you. MY email is bookilou4you@cox.net and my add is 1851 Hillpointe Road Unit 923 Henderson Nv 89074. It would do you good to do things with others and then your Ca would go away because it would be forced to by acts of love by you and the others around you . Hang tuff I beat it and i know you can also. Tell it to go away not to return another day ever. And thats that Love and blessings to you . You are always in my prayers and thaughts and so is Monty . Also I would like to know where you can purchase the games you play . Can you contact me and let me know where to find them thankyou I am close to Las Vegas and im sure they have lots of games here. Also I love your artwork and the products that you created Awesome keep up the creative process if you fill the space with creativeness then Ca and not be in the same space . Some thing to think about love Cheyenne Renard
Posted on October 12th, 2007 at 12:48 am
Comment by Donna Bruffey
Dear Julia,
You may have no idea how many people you affect by writing this journal and sharing it with the world. The numbers must be in the hundreds of thousands. Each person reading your personal thoughts comes away with some sobering thoughts.
You are so absolutely right about caregivers. My husband is my caregiver for my disease, COPD. For the past five years, he has done nearly everything for me, and has helped me in so many other ways. I would be lost without him, and have told him just how much I appreciate him and what he does for me. One cannot be a good caregiver without love. I too can feel his touch during the night, his running his fingers across my hair, or whispering that he loves me. He thinks that I don’t know, but it must be a sixth sense. The other morning he came to me while I was still sleeping, and told me “I’m so in love with you.”, then kissed me and said he was leaving for work.
I was the caregiver for my first husband, during his battle with Melanoma. For two months I watched as he grew weaker and weaker. Each day I kept a log of his medications, how many to give, what time to give, and how to give. These were drugs only to make his life more comfortable, with less pain. Even though they made him sleep more, I diligently followed the doctor’s orders. Believe me when I say that two months is just not enough time when someone you love is dying. I would do it again and again in a heartbeat, if only I could have him back. Our sons, ages 13 and 15, watched on the sidelines. I’ll never know their thoughts, as it’s too difficult for them to speak about them, even 24 years later.
I think there needs to be a National Caregivers Day created. Unless you have been the caregiver for a loved one, or a loved one is your caregiver, you probably can’t even begin to imagine the heartache, and the love that is shared. Caregivers are miraculously enabled with so much strength, willpower, love, understanding, and willing to give. They are truly amazing!
Julia, you are helping us to understand this by way of journaling. I thank you for that. Please know that my thoughts and prayers are with you and yours. You are so beautiful, both with and without the hair. You are beautiful inside. God bless.
Love Donna
