(Please re-read occasionally as I will be updating as I learn more..update inserted April 18, 2018 )
Our daughter Carrie has Colorectal Cancer that has metastasized for the second time.
I thought never to write about this- it is too personal and painful and private. Yet it needs to be told.
Why the change of heart about it?
Her current surgery date was moved up . We were told it would be two weeks or so sometime after the first of the month- so we didn’t hold funds back for the transportation and housing for them. Then , on getting home from our trip, she was told by her doctor – “You no longer have time to wait- it may progress to where you can’t have the surgery if you wait”.
So we were in panic mode- both of us had stretched our budgets to make this trip happen , and I had recently bought a fairly new truck , so I would have reliable transportation while she was ill. Broke, broke, broke.
I reached out in the community and found enough funds to cover their needs until the first- (Many thanks to Sara and Deloda for their research help and to the Newton County Cancer Support Group and several friends who helped). I hope to make people aware of the issues faced by cancer families and share resources which we have found and also some of the emotions and thoughts that happen. please check our webpage for blog posts about cancer and the help available.
We will be fine after payday , but it brought back all the problems that cancer familes have to deal with- many of them overwhelming, both emotionally and financially.
It also brought home the courage and inner strength and grace my daughter Carrie has. She is such an amazing young woman. I stand in constant awe of her. She and her partner Darrell are dancing with this cancer diagnosis with an amazing grace and love.She has done a wonderful job of raising her two teenagers on her own . Her son is 15 -a bright and kind young man- he is in the HALO program where bright young high school students can advance at their own rate- and her daughter , who is 17 , is starting college down at Arkansas Tech in Russelleville this Fall.She graduated a year early from high school. These are strong ,resilient, good young people- who have moved forward through a lot , what with their mom’s illness.In processing all this in the middle of the night , I came to realize that I am a story teller- and this is one that needs to be told. Cancer devastates families- current medical laws are ridiculous- and it won’t change unless we reach out and tell our stories- so I am sharing ours now. I am going to try to suggest things friends and family to do to help those dealing with cancer.
To begin- we have a genetic marker for family cancer.
My Mother – Carleen Thorn , of Low Gap , died of Cancer-it had metatazied from her colon to the wall and apron of her abdomen -was all through her intestines and pelvic floor. It was not found until late stage.Doctor B. opened her up and came out and told us she was full of cancer and there was nothing he could do but make her comfortable. This was in November. We lost her in April 1980.Momma did get to hold baby Carrie in her arms. I had Carrie ten weeks early and she was in the neonatal ICU at the same hospital- Mom was brought up in her wheel chair and held Carrie in her arms- I can remember her saying “I’ve been waiting for you, little girl”.
Doc Tom S.found my Ovarian cancer the day Carrie was born. Fortunately it was encapsulated and I survived.Ir metastaisied again in 1995- and I went through 8 years of chemo and radiation. I will always be grateful to my special friends Linnea Powers and Lee Castleman for the love and time they gave through all the rough spellss- from holding me when I wept to foot rubs to cottage cheese and chips 🙂 and all the Prayers and moral support…
My son Justin (Justy) was diagonosed with Neuroblastoma in 1981. We had been taking him repeatedly to the doctor for seven months- and they failed to pick up on it , until his eye started protruding. They did a cat scan and couldn’t see anything. We took the same films to Arkansas Children’s Hospital and they found five tumours. He was stage IV Neuroblastoma. He had tumors on his adrenal glands, and behind his eye. We went through 2 and a half years of treament, before we finallly lost him. It was a difficult time- both emotionally and finacially. I had just graduated from nursing school and started work at the hospital , when he was diagnsosed. I actually took my state boards while he was in hospital being tested! I remember sittting in his room , reviewing for Boards.
Unfortunately, since I had just begun working, the insurance would not cover him the first year (This was before ARKIDS). yet it wasn’t the medical bills that were so difficult- it was housing and meals and transportation. the daily expenses were almost impossible to meet. Bless our landlord – he waived our rent during that time period. I have heard many negative things about him since- yet he reached out and made our lives so much easier.
We lost our Justy in 1984- he was five and a half.-the nurses on the Oncology floor at Children’s nick -named him “Sunshine”. Bless all the friends and co workers at the hospital who helped with our funeral expenses.
Carrie had a cough all that winter- I kept taking her to the doctor- and ER – nothing wrong- you are just worried because you lost your son – there’s nothing wrong- it’s just a dry hacking cough. Fortunately a new ER doc came in – Allen really listened – had a CAT scan done and there was very obvious tumor about the size of a pop can wrapped around her aorta.We went straight to Children’s – they did surgery the next day . It was a Ganglio neuroma- a benign tumor that is a precurser to Neuroblastoma. Again , finances went south. The decisions rise up – do you buy the medicine she needs or make the house payment- ? How do you make the trip to Little Rock for her check ups? Not knowing how to plug into the network of help that is available.
Jumping to the here and now.
Carrie had increasingly severe abdominal pain. She went to the GP first, for several months , then as the pain worsed to the point of bending her over when she moved- to ER – she saw a surgeon who told her she had an ovarian cyst that had ruptured.
They removed it – but the pain continued to increase. (Evidently one of the symptoms of colorectal cancer is a rigid uterus- how could it be missed, with two different doctors doing surgery? One of things that make you go “mmnnn?” )
When she went back to the surgeon for her check up- he told her “oh that is just normal post surgical pain , honey” and patted her on her bent over back.(Can you tell how furious I still get about that one?) One of his nurses was overheard saying “Oh, she just wants drugs” .
She saw a gyn , who told her it it was time to do a hysterectomy.He went in to do it and she had such a severe bowel blockage that he couldn’t do the surgery. He closed her up and was planning another surgery later-
Carrie’s cousin and I yanked her out AMA and took her straight up to Mercy hospital in Springfield to the ER. She was admitted – they removed a tumor that was completely across her abdomen. It had ruptured several times at some point in the past. She had surgery, chemo , and radiation – became so ill they sent her home under Hospice Care- she rallied and had more surgery and was able to be home for awhile. She has numerous medical issues to deal with . She has difficulty absorbing nutrients due to her ostomy, tires very easily and has medication and medical supplies to buy.
. It metatastiszed to her lung- they took a wedge section out in July a year and a half ago and she rallied had more surgery and has had almost a year and half of reasonable health.
Now it is back – wrapped around her aorta and carotid arteries. This is a very dangerous surgery and thankfully her doctor at Mercy has gotten her into Mayo in Minnesota for further treament and surgery.
They ended up removing her lung and pursuing further chemotheraphy. Then around December , her incision site , which had bern numb, began hurting. It reached almost unbearable levels of pain. After several months of battling pain conventionally, she was exhausted and discouraged. We got her into pallative care, and she now has a greatly improved quality of life. The pain she was dealing with is a know side effect of thoracotmy. It is considered a syndrome.
She was also referred to a neurosurgeon to be evaluated about this. He found medical answers for her, rather than surgical, which has been a real gift.
For us,we have learned to accept each day as a gift.
We are blessed by the generosity of our local community and the people we have talked to in both American Cancer society and the Colorectal Cancer Coalition. Yet so many folks don’t even know where to begin searching for help. We are also a proud people here in Newton County . We have strong work ethics and believe we should handle our “own business”. Yet Cancer doesn’t care about Pride. The costs and the choices we have to make , just to get by during cancer can wipe out resources and wear down the Spirit. The mean income level here in Newton County is $12,000.00 . It is almost impossible to meet emergencies on that level of income!
I think it is important to speak out and ask for the small help you need. Things as simple as transportation for treatment can be overwhelming- do I buy the gas to get to treatment , or I buy groceries for this month? How do I pay for staying away from home for testing? How do I pay for gas for the family member watching my children while I am away? What about meals for the family that is sitting by my bed? Or holding my hand and washing my face when I throw up from chemo? Who is doing the laundry at home or feeding my dogs- or washing the dishes while I am gone?
All these things DO weigh on you mind.
So, to family and friends:
We all feel helpless when a loved one is ill. But you CAN do something. Whether it is a small donation – to cover a few meals- grab a gift card to a chain like Arby’s at the check out stand and send it -find out what theri particular worries are- maybe you can help them brainstorm to deal with it – but often just listening is all they really need.
You can visit , if they are hospitalized locally- a pat on the hand or hug and sit quietly for ten -fifteen minutes – can lift a patient’s day- it gets so LONELY when you are stuck in hospital! You don’t really feel up to visiting – it is just important to have someone show up who cares. Many people are afraid to raise the subject of cancer with a patient Your friend may be wanting to talk about their illness. You don’t have to say anything – LOL – just listen.
You can help family- bring food, shop, do laundry – do a few dishes- offer to feed the livestock if they farm, if they have to be gone with the patient-check on family that may be borderline able to care for themselves…
Set up a “Card a Day” circle- four or five friends get together and send a card out each day – maybe Jane on Mondays , Cathey takes Tuesday , mike does a Wednesday card -etc. You have no IDEA how much a pretty card will brighten someone’s day!-It doesn’t have to be the patient – try sending one to family members.
If you are good at research – be the go to person – find the resources for transportation and housing – meals in hospital for family- some hospitals offer this – others don’t.
Donate to the Cancer Society- your local chapter – it stays home …while national donations go for research…There are also events for those of you who walk, cycle, climb, goldf – that can help raise funds for research.
There is so much you CAN do to help- SMALL things add up and truly do help lighten the load.Often there is a primary caregiver- the “rock” that holds the family together- they can get wrapped up in taking care of the minutea and be drained down to nothing- as friend or family – watch for this and grab them for a cup of coffee or ameal – and let them know what you see happening!
Families or the patient can get so overwhelmed. They become exhausted , discouraged and feel helpless. Sometimes they just need a shoulder to cry on , a quiet hug , or someone to listen when they rant and rave. Often a patient may be acting out , due to their anger and the family feels guilty about expressing anger in return – so give them a place to vent – where they don’t feel guilty. Be sure to listen – and remember that while there are “four stages of grief” no one will go through them in a set order- nor will they necesssarily go through all the stages. They be stuck in anger- many families get locked into denial- family members may even retreat from the patient, mainly because they don’t have the coping skills.( A good read to help understand this is Elizabeth Kubler Ross’s book “Death and Dying” ).
Perhaps the the most important thing you can do, after Prayer, is just let the family know you are there. It means so much to all os us.While the related posts appear inthe menu below- I am also including the links in this post – so they are easier to find”
Colorectal Cancer-How to get help with day to day expenses.