Squamous Cell Carcinoma is One of the Dirtiest Things I Know

Well, here we are. Dad’s mental state is deteriorating noticeably. He has this annoying new habit of laughing to himself when he disagrees with anything that is said to him. I never knew a laugh could sound so painful… so hateful. He is becoming more paranoid and delusional daily. He frequently has no idea where he is and asks why we “brought him here to visit”. He is transported back in time to Louisiana and believes he still lives there. It isn’t uncommon for him to ask me to “take him back to his bride”.

Physically he is doing amazingly well. Ask anybody that knows him and they will tell you he looks better than he has in years. If you were to ask his doctors, they would tell you that he is in remarkable shape for someone with his list of physical conditions, diseases and age. He is frequently referred to as a medical miracle. It’s as if his physical state is improving as his mental state declines.
Tomorrow, we will go in for yet another surgery. Dad has squamous cell carcinoma on his right ear, again. They will do Moh’s surgery and it will be gone… until the next time.

This past week we found out my mother has squamous cell carcinoma. It’s not on her, it is inside her. She has lung cancer. It wasn’t there in April when she had a CT scan because of pneumonia but it is there now in August. I wish to God there was a treatment like Moh’s that could fix her as easily. Hers is inoperable. We are so in need of a medical miracle here. What a difference it makes to have something like this inside your body rather than outside it! I hate that I am here and not there. I hate that I constantly end up feeling like I am letting down someone in my life, someone that I love. It is all part of the curse/blessing of being a caregiver.

For those who may not know it, my mother spent the last seven years of my grandmother’s life as her caregiver. She devoted herself to her mother. She gave up her home, her time, her everything to be there and care for her mother. We lost Grandmama 5 months ago. Needless to say, Mama has been killing herself trying to settle her estate, deal with all the little things that have to be done, all while dealing with her grief. As she has physically deteriorated, we all assumed it was just a part of the insane stress she has been under. We never guessed there was a time bomb ticking inside her.

Caregiver stress weakens the immune system. A weakened immune system allows things like cancer to grow. I can’t help wondering if there isn’t a direct correlation between the amount of stress and the rapidity of the growth of her disease. I am so frustrated and angry at something so far beyond our control. But I do know that those feelings, too, will eventually pass. Isn't it odd how much of everything in our lives depends on the passage of time?

My mother is one of my heroines. She is one of my best and dearest friends. She raised me and my little sister as a single mom in an era where we were the minority. Very few of my friends growing up lived in a one parent household. If they did, it was usually because a parent had died, not divorced. Mama worked for a pittance and struggled to provide for the three of us. She held her head high and did the best she could (with much help from her beloved parents). She taught me that I can do anything I put my mind to as long as I believe in MYSELF. Most importantly, she loved us.

Over the last five months, I have thought to myself countless times that Mama finally has an opportunity to LIVE. She can finally live her life for herself… she can do the things she has never been free to do… she can live a life where she doesn’t have to answer to another living soul. I’m a bit pissed off that a stupid disease is invading her and trying to knock her down. It is a strong reminder that life is too short. It’s a shame it takes reality biting us in the butt to remind us that life is ALWAYS too short!

I have often said that I come from a long line of Steel Magnolias. It is strong, female, southern stock that always seems to rise like a phoenix amidst the ashes of circumstance. Yes, I know I am somehow mixing metaphors but I also know that the people who read this will completely get my meaning. I also know that there is always a chance my mom will beat this thing simply because she is who she is and she is a Steel Magnolia.

If you know my mother, you know what a great person she is. If you don’t know her, I sincerely wish you did because your life would be enriched by the acquaintance. But whether you know her or not, I ask that you lift her up in prayer, kind thought and wishes. Every little bit helps. And we all need a little help sometimes.

Fixations

October 17, 2011

Fixated. Such a simple little word but it has the ability to drive a caregiver crazy. With Alzheimer’s comes the single-minded focus of fixating on something until it is the only thing you can think about, talk about or worry about. It can be a real problem or an imaginary one. It can be something big or it can be something so small a normal person would never even give it a second thought. The only way to deal with it is to just plain deal with it. You have to find a way to put their mind at rest (until they find something else to fixate on). Above all else, you have to reach to the depths of your soul to find a source of strength and patience to draw from.
Dad has an atypical fibroxanthoma (AFX). It is a rare cutaneous spindle-cell neoplasm, malignant tumor on the top of his head. With him, the concern comes in because he suffers from rapid growth skin cancers. He has been diagnosed, over the years, with every type of skin cancer there is and in every case, they have grown at super human speed. Right now, it is the object of his fixation.
“When are they going to do something about this thing on my head?” Dad asks this question 100 times a day.
100 times a day I reply, “Nov. 7th.”
“What is it? I don’t understand why they can’t just cut the damn thing off and get it over with.” His questions and comments regarding the whole situation seldom vary.
I have explained repeatedly that they are going to have to do a particular type of surgery (Moh’s) and that was the earliest they could schedule it. What I don’t explain to him is the concerns related to me by the doctor. The tumor is large and they believe it has infiltrated the outer portion of his skull. The surgery will be trickier than most but it will be successful. They will get it all… they always do. Odds are in favor that we will discover another spot of cancer that will need to be removed… we always do.
So far today he has already asked me about it twice and he’s only been up for an hour. I will continue to pray for patience as I give him the same old answers. I will look forward to Nov. 8th when he will awaken and ask me what the bandages on his head are for. In fact, I think for today, I will simply look forward and smile.

Why I Took A Hiatus From Here

My head is reeling and my heart is weary over the events of the last month. On Thursday, June 10th, as I was cooking dinner, Dad called out that maybe I should run him over to the hospital because he was having chest pains. I asked him if I should call 911 as I settled him in his chair and ran downstairs to grab my purse. He said no. I was trying to figure out how to get him to the hospital and do CPR at the same time if I needed to. Before I could make it back upstairs (less than 2 minutes), he yelled that maybe I should call them after all. I was dialing as I ran back up the stairs. I took his blood pressure as I gave the dispatcher our information. It took 7 attempts (ERROR, ERROR, ERROR…) before I got a reading of 258/139. I practically yelled the numbers into the phone. I was assured that the ambulance was on the way just before I hung up the phone. I prayed frantically as I took his BP again 253/138.
I was so relieved when EMS arrived. Dad told them he had already taken 4 Nitroglycerin tablets as I was informing them of his shallow breathing, chest pains and extremely high blood pressure. One of them asked me if I had given him an aspirin. When I told him I hadn’t, he immediately gave one to him and told him to chew it up. I had no idea this is something that should be done with a heart patient if the Nitro doesn’t work. In many cases, it can be the difference between life and death to anyone having a heart attack.
I was relieved at the hospital to find out that he had not had a heart attack but was shocked by the discovery that he not only had Pneumonia but a mass in his right lung. Needless to say, he was admitted. They also discovered a rampant Thyroid condition and he was severely anemic. 2 days later they made a decision to do Thoracentesis. See http://en.wikipedia.org/wiki/Thoracentesis for a detailed description. Unfortunately, the test was inconclusive.
On the 15th, I arrived early because Dad was being discharged. I walked into a nightmare beyond belief. Overnight, he had gotten so bad he couldn’t sit up or roll over by himself. He could barely feed himself. He didn’t recognize me or anyone else. When the doctor arrived a couple of hours later it was immediately decided he would have to go to a rehab facility because I wouldn’t be able to manage him by myself at home in his condition. He was transported via ambulance across the parking lot to the rehab facility. We spent 17 days there with another trip to the ER via ambulance in the early morning hours of June 22nd (to be told once again, that he had Pneumonia), he was sent back to rehab after about 6 hours in the ER.
Every day that he was in rehab, I spent part of the morning and part of the evening with him (and often, part of the afternoon). And every day I saw small signs of improvement. Arrangements were made to bring him home on July 5th. On July 3rd, he was again sent to the hospital via ambulance. He was assigned a new doctor. For once, a doctor stopped everything to listen to me when I insisted they kept diagnosing pneumonia and he kept getting sicker. I asked if there was any way he could test for Congestive Heart Failure. He never batted an eye as I explained why I thought it was a possibility, he simply ordered an Echocardiogram for the following morning.

My relief was staggering when the doctor returned the following day and smiled at me before saying, “Good call, girl. He has CHF.” As soon as they began treating it, we saw visible signs of improvement. He was released to come home on July 7th!
On the morning of the 8th, I was startled to realize Dad has NO memory of his time in either the hospital or rehab. Alzheimer’s has become a protection device for him at times. Life has drastically changed for us yet again.
We have home health involved to try to help speed Dad’s recovery. Physical Therapy 4-5 days a week, Occupational Therapy 2-3 days a week, Speech Therapy 3-5 days a week and an RN who comes in 2-3 days a week. I am thankful for the extra help, as they give him a reason to get up and get moving. He is eager to please and is making steady progress because of it.
There have been many events over the last month that I will share as time goes on. But for now, this is where we stand. Tomorrow will be an important day. We go to see the Oncologist to get the results of the PET Scan and Lab work that have been done over the last couple of weeks. Tomorrow we find out if Dad has lung cancer. Tonight, I simply pray for peace beyond understanding…

It's Been a Long 10 Days

June 5, 2010


I am going to encapsulate this the best I can. I went out of town on Thursday, May 27th. Dad was very anxious about my leaving him. He understood that I had to go (my sister had surgery and I needed to be with her and I was taking one of my grandsons to see his mother) but he really wanted me to stay here with him.

On Friday, I received a call saying Dad had fallen and had cuts/scrapes on his arm, hand and head. Richard had gotten the bleeding to stop but needed to know how best to provide first-aid. I was in a panic and wanted them to take him to the ER but they insisted it wasn’t that bad! I called to check on him every day and he insisted he was fine but missed me.

I returned Sunday night but Dad was already in bed. Monday morning (Memorial Day) Dad awoke and was thrilled to have me home. He summed up all that he felt when he hugged me tight and said, “I am so glad you are home. I missed you. Everybody did ok but things aren’t right when you aren’t here. They don’t take care of me the way you do.”
I was not so thrilled to see that he had what appeared to be Conjunctivitis in both eyes. The cut on his arm had been cleaned and bandaged, as was his hand. His head had a small cut but no bump. I called the doctor but they were closed for the holiday.

On Tuesday morning, I called and got us an afternoon appointment. I was right about the eyes, he had a case of good old Pink Eye. Oral antibiotics 3 times a day for 7 days and antibiotic eye drops 4 times a day. The doctor was unconcerned about the small cut on his head but he decided it was time we explore the reasons for the falls more thoroughly. At this point, we have pretty much ruled out medication as a reason (we have cut out virtually anything that could cause dizziness or loss of balance in the last 2 months). He scheduled Dad to do Lab work on Thursday.

On Wednesday, we met Dad’s new Dermatologist. He explained that they were going to do Moh’s Micrographic Surgery on Dad to remove the cancer on June 30th. Dad has Squamous Cell Carcinoma (sometimes referred to as non-melanoma carcinoma). Although generally more aggressive than Basal Cell Carcinoma, this cancer is highly treatable. The procedure can take anywhere from 1 ½ hours to 5 hours. There is no way to know ahead of time exactly how long it will take.

On Thursday, we went in for the ordered lab work. Now, we wait until our appointment next Tuesday to find out the results. We are still trying to get in with the Neurologist to have him tested for a host of Neurological possibilities for what is causing his loss of balance, dizziness and fainting. The lab work makes me feel like we are taking a more active role in finding the problem. Deep in my heart, I fear that it is simply a matter of “old age”.

Friday was rather unremarkable since we didn’t have any appointments and Dad has been sleeping a lot all week because his eyes are bothering him.

Today, he rested a lot again. Jordyn spent the day trying to find ways to involve Dad, ways to get him to communicate or connect with him. He did play several games of Gin Rummy with Jordyn (which I take as definite progress). He also let Jordyn make him a grilled ham & cheese sandwich for lunch. We have got to get Dad interested in doing something, anything! I am surprised and delighted that my 11 year old sees the importance of this and takes an active part in trying to help. As I point out frequently to Dad, I need him to spend time with Jordyn... Jordyn needs it. Once again, I am reminded that we can do anything as long as we work together as a family to accomplish our goals!