Disability Grants To Help Cancer Disabled Janis Fulfill Retirement Home Dream
by Janis High
(Phoenix, Arizona, USA)
My name is Janis High. I am 61 years old, married for 43 years and blessed with three children and four grandchildren.
In 1995 I graduated from college (yes - I was 40 years old!) as a Physical Therapist Assistant. I had achieved my goal of being able to work with disabled people who needed me. I spent 20 years teaching them what to do, and how to do it, to regain their strength, their independence and their life.
I was able to teach them that an illness or accident was not the end. With knowledge, effort and time they could rewrite how their lives would be. It was a fantastically satisfying career!
I also had another goal. When I graduated, my husband and I purchased a little over 20 acres of land in beautiful northern Arizona. It was to be our retirement.
We planned to build a small home, and have not only a large garden but an orchard as well. I wanted to be able to help our small, low-income community there by donating fresh vegetables and fruit to the local food bank… especially the fruit, and especially for the children.
We would use some of the fruits and vegetables for our own use. Part of the produce would also be sold to supplement our income.
The plan was to use some of our savings and to sell our home here in Phoenix to finance our retirement projects. It also included putting in a well. That was before the spring of 2013.Disability Issues
In the late spring of 2013, I discovered a lump on my neck. I was diagnosed with metastatic papillary thyroid cancer, stage 4.
The tremendous fear that comes with hearing a diagnosis like that didn't last long though. My doctors told me that it was one of the easiest cancers to cure. They do surgery, give you one chemotherapy treatment, run one more test and that's it. The test would show if there were any more cancer cells in my body.
Unfortunately, my test was inconclusive. We didn't know if it was gone or not. By fall we knew the cancer was back.
It was now in both sides of my neck and was termed "aggressive."
In the early spring of 2014 the doctors performed bilateral radical neck resections. They removed all of the tumors, cancerous tissues and lymph nodes from both sides of my neck.
After this surgery I was left with some pretty severe side effects. It seemed we were constantly trying to figure out what had happened.
I had severe nerve damage to my right hand and arm, and also to my right ear. Apparently the right brachial plexus nerves were damaged along with a facial nerve.
I had very little use of my right hand, a very weak right arm and severe constant pain through my whole arm. I lost most of the hearing in my right ear and had severely decreased balance.
As I am right-handed, it was difficult to do things without it. Also, I couldn't walk without falling if I didn't hang on to someone. On top of all that, they had removed so much of my neck muscles that I could not hold my head up for long without a brace.
Dealing with the pain was one of the worst parts. It took several tries to find pain medication that would ease my pain some but that I was not allergic to. Nerve pain is nasty!
Eight days after the surgery I had to have another CT scan. As they laid me down on the gurney I went into Cardio-Respiratory Arrest.
Thankfully a very well trained Respiratory Therapist was there and able to perform CPR. My throat had swelled shut and I was not breathing.
The only way my doctor could open my airway and get me breathing again was to do a tracheotomy. I now had to learn how to talk and swallow around a tube in the front of my throat. I had to also learn how to care for it and the hole in the front of my neck.
At first we thought the trach tube would be temporary. However they soon discovered that I now had Central Apnea. It was caused by all the trauma.
With sleep apnea your body won't breathe for 10 seconds or more but it will still try to. With central apnea your body won't breathe for 10 seconds or more but makes NO attempt to do so. The area in my brain that tells my body when to breathe had been damaged. The trach tube would be permanent.
Later that spring I underwent daily external radiation treatments to my neck area. This went on five days a week for two 1/2 months. It wasn't bad once I got over being claustrophobic.
Soon after the radiation treatments I developed chronic lymphedema. I didn't have enough lymph nodes left in the front of my neck to handle the normal lymph fluids.
My face and neck would swell up. Sometimes my eyes would be swollen shut. The swelling would get bad enough in my throat that it would stop me from swallowing.
My husband and I underwent a crash course in Lymphedema Massage Therapy. We had to learn how to gently move the fluid down and to the back of my neck and shoulders. There I had lymph nodes that could pick up some of the fluid and get rid of it. This would become a daily ritual for the rest of my life.
Later that summer I developed pain in my left hip and low back. Again, the cancer was back. This time it had metastasized to the bone in my lower spine. It had also distorted the bone in my left hip joint.
I underwent more external radiation. This time it was to my lower spine. It was daily for seven weeks. Immediately afterwards I was hospitalized for a severe bowel obstruction. The radiation had closed off part of my intestines. The doctors shut my system down (nothing to eat or drink) for 10 days and it cleared up.
I now return to the cancer center every three months. They scan me from my knees to the top of my head checking for cancer. They run lab tests and address any concerns I have. They are doing all they can to help me with treatments for all the problems my disabilities cause. I believe there are 14 or 15 disabilities total.
When all this first started I told my Oncologist to be vigilant. I was one of those types of patients that if anything could go wrong, it would. He certainly believes me now!Financial Hardship
When I became sick I was forced to quit work. My income was the major source of income for the household. I am now on Social Security Disability, which I am very grateful for even if it is almost $5000 a month less than what I had been bringing home.
Now we struggle to keep our utilities on and food on the table. And they have just this month raised our rent. I have a couple of family members that try to help a little when they can, but they are close to low-income households themselves.
In Phoenix, as in most cities, the cost of living is high. With rent, utilities, insurance, a few bill payments and groceries, it costs us $3300 a month to live here.
If we could build a home on our land we would be able to live there for $1500 a month! Our total income now is $3248 a month. At retirement (which is fast approaching) our income will drop to $2550 a month.
Living here in Phoenix we run $52 a month short of what we need to just get by. Living on our land we would have about $1050 more each month than what we would need to "just" get by!
The plan was to sell our home here in Phoenix and use some of our savings to build a small home and put in a well on our land. The drop in my income, along with the doctor bills, hospital bills, medications and treatments have taken all of our savings. But, worst of all, we lost our home of 23 years in a foreclosure.
I have spent nearly a full year trying to find some kind of help to ease our struggle. My queries have been met with "sorry, we are out of funds," or "we don't assist with your type of cancer," or else there is something that disqualifies us from their assistance.
We have received four small ($100) grants from my cancer hospital. I am eternally grateful to them, not only for the grants, but for my very life as well.Income Efforts
One of my disabilities is having very poor balance. That is why I was forced to retire from my career in physical therapy. I cannot help patients get back up on their feet and walk when I can't stand on my own two feet unassisted.
I am unable to take a job out of the house due to my disabilities. I have poor balance, severe chronic nerve pain, limited use of my right hand and arm, chronic fatigue, chronic lymphedema, central apnea, and neck muscles that can't hold my head up for very long. Just to name a few.
I cannot do any online computer work for the same reasons. Plus, I can't afford a computer or any cable and Internet.
I was able to qualify for Social Security Disability. I am grateful for that as it just covers our rent.Specific Needs
I am now fighting to regain my strength and my life! We are also fighting to survive. Both of these are constant daily struggles.
Our savings are gone and our home is gone, all because of cancer and disabilities.
We have the land. We have solar panels and a generator for power. We have two large water tanks for water storage. We have our plans for the garden and orchard, and those areas are already fenced to keep the deer and antelope out.
We have everything we need to fulfill my goal, my dream, except the money for a small home. Either to build one or to have a manufactured home put in. I need a grant for a home.
My husband's retirement is fast approaching. When he retires our total income will drop. We will end up an elderly couple with no quality of life.
With a grant for a home, I will be able to have a much less stressful life. There will be a tremendous drop in the cost of living for us. No rent, no utilities and no spending each day trying to eke out a living.
I will be able to focus my energy on fighting this battle with cancer. I can rebuild my strength, my confidence and my life!
I thank you so sincerely for your time and effort to learn about me. I pray someone can help.