Well that question will take a while to answer. It has been a nightmare to say the least. I wish it was just a real nightmare and I could wake up and everything could be normal.
Let's rewind to September 2024. You may remember we all had covid again. My son and I got better. My husband didn't. Weeks went by and he was not well. Thanksgiving came and he was worse. We ended up going to the walk in clinic. Doctor gave him some prednisone and he said he felt a little better for a few days. I was going to work and racing home so worried he was going to die. I kept saying you need to go to the doctor, but he didn't want to. He was not a go to doctor type of person. In the 44 years I have known him he has seen the doctor only 4 times, besides work mandatory check ups. Anyhow, the days continued to go along. On December 11th I came home from work and he said I need to go. I can't breathe. I about passed out, because I was so scared. I said, to ER or back to walk in?. He said ER. So off we went. I went to closest one, which you will find out was a mistake.
At the ER they took him right in. Did a bunch of tests and a CT scan. Mind you, he is terrified of needles. It was very stressful. The results showed a mass in his throat. The doctor at the ER said they could not do anything for him at that hospital because they had no ENT doctor on staff. He would need to be moved to another hospital. By this time it's 6pm. They checked our other local hospital. They had no beds. They checked every hospital in California. No beds. They checked several out of state. Nothing. So they said next place would be Colorado. Each time they checked it took an hour. The nurse would come back and say sorry they can't take you either. By 10pm we were beside our selves. My husband was sick, tired and scared. He wanted to go home. So I told the nurse. She said off record, if you drive to the other local hospital they will have to take you. My husband just wanted to go home at that point. I couldn't blame him. He was doing better then when we came in so we left and went home. Got to sleep only to be woke up at 3 saying he couldn't breathe. So I got up, dressed and drove to the other hospital as fast as I could. Ran in told ER personal my husband couldn't breathe. They came and got him out of car. You are probably wondering why I didn't call 911. Well long story short my husband wanted me to take him.
In The ER I told the nurse what happened at the other hospital. She had the ER doctor look at him and they did another scan. More blood work etc. The ER doctor said he was calling an ENT doctor to come in ASAP. By now it is 5:30am. ENT doctor showed up really fast. I was terrified, husband was terrified. The whole ordeal was like something you see on a movie, not real, but it was. Nurses, techs, doctors all scrambling around. It was crazy. The ENT doctor did a scope through the nose and down the throat. He said he would need to do an emergency tracheostomy.
The tumor was like a flap. When he breathed in, it closed. When he breathed out it opened. This had been going on for a long time. The doctor said it had just grown to the point it was life threatening. So at that point we had no time to think. I said goodbye and off he went to surgery. I was beyond terrified. Sitting alone in the waiting room for what seemed like hours.
I had not told the kids we were at the hospital. I hadn't told anyone. As I sat and waited to hear if my husband was going to be ok a million things ran through my mind. As you can imagine. It was exhausting and terrifying. There is really no other way to explain how I felt.
As the time went by I realized I needed to text my boss and tell her I would not be at work that day. I did that and when she asked what she could do I said pray. Prayers were all I needed.
Finally, the doctor came out. My husband was alive and was stable. The doctor said prepare yourself for results from the biopsy. Im pretty sure it is cancer. But good news, is it's treatable. He has a long road in front of him, but the outcome will be good. The doctor was very kind. He sat and talked to me for an hour. He said go home and get some rest. Your husband will be heavily sedated all day. You cant see him right now. Which looking back was weird, but I said o.k. and went home. I had to tell the kids anyhow.
I drove home, but could not remember how I got home. I cried the whole way. I should not have been driving.
My son was off work that day and home when I got there. He never knew we left the night before.
Telling the kids was very hard. My daughter had been at the ER the previous day and they both knew he had the mass in his throat. They knew we went home, but didn't know he went back at 3am. I filled them in about what happened.
I called ICU every hour to check on him. Finally at 4pm I said Im coming back. They said that was fine. I had my brother take me and drop me off. I made the hike through the halls to ICU. He was still sedated. I was not prepared for what I saw.
It was shocking. I tried not to cry. He didn't wake up. I stayed for a while and held his hand. I finally decided to let him sleep and I went home. I cried so much my eyes hurt. I didn't sleep and was up ready to go back at 8am.
My brother drove me each morning and my son picked me up each night. The weather was bad and driving at that time under the circumstances was just too much.
That morning he woke up. It was so hard because he couldn't talk. He knew what happened, but it was very hard to deal with it all. I stayed all day every day at the hospital. Went home at night, but could never sleep. Many doctors came in and talked to us. They said he had a bad heart. Needed dental work and would need to see an oncologist. He would need a cardiogist, general practitioner, a dentist and a pulmonary doctor.
Yes, it was cancer.
The days passed and he got a little better. After a week he was transferred out of ICU to a rehab facility. I was still going and sitting all day every day.
Christmas was coming soon. I had not done one thing. I ordered the kids gifts on Amazon. That was about it.
They said he could go home on Christmas Eve. We counted the hours until that day. It was frustrating because in order to go home, I had to learn how to care for the trach. I had three people show me before a traveling therapist showed me the right way. She said I was shown wrong and since I was right handed I needed to stand on his right side to change trach tube, clean etc. It was very challenging, but I finally got it.
We were ready to go home, after 12 days of hospital living. It seemed like a lifetime believe me.
On the road home I burst into tears. It was overwhelming. I was scared of what the future held, but I was so glad to be going home.
Did I mention it rained everyday? Well it did. On that day though, the sun was shining.
When we got home life as we knew it was completely changed. He had a machine that blew mist into the trach he had to have going all the time. He had a suction machine to suck out the mucous. That machine was on more then it was off it seemed. It was very difficult to manage it all.
Christmas came and went. Time ticked slowly by. I took two weeks off while he was in the hospital and then had two more weeks off for Christmas break. That helped a lot.
Getting appointments was very hard. I had my daughter calling and I was calling several times a day. Finally, somehow we got all the doctors lined up.
Before we left the hospital we saw an oncologist. My daughter got a general practitioner lined up, but the cardiologist was almost impossible. But we did it and on January 14th, on my birthday, we were finally seen.
The doctor ordered a nuclear heart scan. We got that and went back to the doctor for results. Doctor said he needed an angiography. So that was scheduled at the hospital. By the end of January we knew he needed a pacemaker. On January 31st he had one put in.
We saw the dentist in between that and he referred us to oral surgeon. He said teeth needed to be pulled. You remember my husband does not do doctors or dentists. It was another traumatic event.
The pacemaker had to be put in before the oral surgeon could pull teeth. He had to have clearance from the cardiologist first. So by March 12th, he was ready to get not one or two teeth pulled, but all his teeth had to be pulled!
Well of course that took time to heal. In the meantime it was decided in order to get chemo and radiation he would need a port put in and a feeding tube and a mask made for radiation treatments.
Another traumatic event due to his high anxiety of doctors. It was decided he would need to be put to sleep to put in the feeding tube. So off we went for those procedures. He was ready to start chemo and radiation by April 14th.
Chemo and radiation started on the same day. Chemo was every Monday and radiation was Monday through Friday.
My daughter made him a shirt for treatments.
He has worn it to every treatment. It is getting a lot of use! Still wearing to hydration. It has zippers on sides so you can access the port. It gets washed after each treatment so it is ready to go.
She wasn't loving the fabric to sew on, but it is that cooling fabric, that is used for sports.
Of all the things he went through, chemo seemed to be the easiest. Radiation was 35 days and chemo was scheduled for 7, but after 6 his blood count was too low so they decided to skip the last one. He finished radiation on Tuesday the 2nd of June.
60 pounds lighter!
The radiation burns were unbelievable. That was another breaking point for me. After about three weeks his neck was so burned it was black, dark maroon and spots of white. It was so terrible. Added to the misery is the neck strap he has to wear to hold the trach in. So constant rubbing on the severe burn was unbearable. My daughter had some burn cream she gave him which helped heal it quite fast. Due to the miscommunication by the office staff we were unable to get a prescription for the cream. That gave me a lot of grief. Finally, two weeks after he had been using the cream we saw the doctor who said he didn't need a prescription at that point.
A lot of frustration and tears followed me through the months. Some people call it a journey. I call it a nightmare.
Since then we have been going three days a week for hydration. He can't eat or swallow. He can only get liquid through his feeding tube. And his magnesium level has been low and has required bags of magnesium during our hydration visits.
A lot of bad days and a lot of worse days. There were a few good days as I am sure you can imagine. Just one thing would be hard enough, but he has gone through so much. We have all been through so much.
I don't know if normal will ever be possible again. It sure doesn't feel like it.
We have missed every Holiday, Anniversary and Birthday. I rarely saw my Grandkids due to them being sick with colds or just busy. I missed all their events. I tried everything to stay healthy. There was no way my husband could survive a illness like covid.
The kids all came over one day in April and we tore out the veggie garden. My son in law roto tilled it and we got it planted. I have been in charge of tying tomato plants and cucumber plants up. It has been a lot of work, but we are now getting fresh veggies.
On Fathers Day the kids came over and gave my husband a sign they made him for his garden.
We will bring it in for winter so it does not get damaged.
The rest of my yard is being destroyed by grasshoppers. It was neglected as well during this ordeal. My son and I raked leaves when we could. I am still trying to finish up the winter clean up. Hopefully soon. I miss my gardens. I miss my flowers. It has been a very long 6 months.
I have missed blogging.
Hopefully things continue to move forward and good news comes regarding the cancer. Hoping his trach can come out along with the feeding tube. That would be amazing.
I hope you are doing well and enjoying the spring days. FRIDAY is the first day of summer!
