Tumor Humor And Real Talk: STRESS IS NOT GOOD DURING RECOVERY

It’s been a crazy couple of weeks. Here’s an overview:

The man who cut open my head
twice in one month!
My neurosurgeon Dr. Rammos

• March 13, Daughter Cat has oral surgery
• March 20, Cat, who is a Type I Diabetic,  is brought to the ER. She has a kidney infection.
• March 21 – Was suppose to visit my mom but the plans did not work out.
• March 22, Cat’s condition is getting worse.
• March 23, Cat is taken to ER. She is suffering from  an adverse reaction to the meds. Doctor says it’s the worse case he has ever seen. She is released with care instructions. Throughout the day she gets worse, however improves after a call to a doctor who gives additional care suggestions. If she had not improved within 6 hours it would have been back to the hospital.
• March 24 – Dad is major league trippin’ big time. Sometimes I wonder why do I even try.
• March 25 – Appt at the rheumatologist for blood work. Dad calls again. Just when I thought it could not get worse, he takes it to another level.
• March 26 – Doctor’s appointment. I was in the office an extra hour and a half over a concern that turned out okay.  To add, I got very frustrated with having to depend on others to drive me. Those chide remarks can be annoying.

Then, early this morning, while my entire family is asleep, we had a 4:15 am scare at my home. We are laughing about it now, but I wasn’t laughing when I called the police. Let’s just say, I’m glad “I came to myself” when I was about to step outside in my tee-shirt and underwear to help my husband who was surveying our perimeters. Can I blame it on the tumor? LOL! The New Orleans chick was ready to fight whoever was trying to break into the Thomas Castle. It was a false alarm, but tumor or no tumor, I WAS PROTECTING THE FORT!! LOL!

Today, I had an appointment with my neurosurgeon. As a doctor he has good bedside manners, is frank, and tells you the truth no matter how hard it may be to digest, and yet he is gentle and compassionate. I appreciate this. However, in my Kevin Hart’s voice, “I wasn’t ready” for one of his concerns today. I’m still chewing on it, so maybe I’ll share it later.  Another brain issue is the unavoidable stress I have been dealing with the past few weeks. Dr. Rammos agrees this high level stress is not healthy for my current condition. I’m getting headaches because of the stress, and can run the risk of a seizure. I will be scheduled to have hopefully my final post-surgery  MRI in June. I have got to do a better job of calming myself. Dr. Rammos said my incisions has finally closed and looks great! Thank you Lord! I still have a pulling pain from where they had to pull my skin together twice to staple my head shut. I also literally have a hole in my head! For real! It’s going to take some time foe the bone of my cranium to heal. It’s still very sensitive at the top of my head.

Lastly, today I fell and thankfully I did not hit my head. Yep, I was doing something I should not have been doing. At the time it seemed like a good idea. Before y’all lay into me, remember you have done some dumb stuff too, LOL!  Now, my body is sore and I have a headache! UUUUgggghhhh!!!!  

My husband and I pray together at night. Tonight he was thankful for Divine protection because it wasn’t ADT (Alarm system) that kept is, but rather it was God.

Be blessed,
Roline

Father Can you Hear me?

Even though I monitor my dad’s affairs, take care of his wife (my mom), and make sure his needs are taken care of, and even moved him into my home (he went back to his home), we have a strained relationship. It’s his choice, not mine. He's a stubborn and proud man. If you don't go along with him a or confront his erred ways, he will shut you out. Narcissism is prevalent in his life. 

Since my diagnosis back in December, my dad has yet to call just to see how I’m doing. Surprisingly he agrees that he does not call me. He only calls when he needs something.

Today when I spoke with my dad, I got really upset. He had the audacity to tell me that I wasn’t emotionally feeling what I had said I was feeling--USED. Funny, he DID NOT say he wasn’t using me. SMH! Anyhoo, during the conversation he stated I was filled with the devil. In my ShaNaeNae voice, “NO HE DIDN’T!” That’s when my head began to turn 360 degrees like Reagan’s in the movie “The Exorcist.” Ut-Oh, did I just prove my dad right? LOL! In my Florida Evans voice, “DANG, DANG, DANG!”! I turned into a MAD BLACK WOMAN, and got sucked into heated fellowship which is not good when you are recovering from brain surgery. Dad has said some harsh stuff to me, but "the devil?" SMH & Chuckling! I’ll laugh out loud about this later, but now I have a headache! Pain meds to the rescue! (NOTE: Please, don't y'all go to bashing my dad.)

Too much drama can lead to depression and sadness. I need to change my way of thinking. Time to write in my gratitude journal. Lord, help me to focus on you. Change my attitude!

Lesson: Satan can’t possess the saved, but he certainly can influence them (including your family) to get you off track. You choose how you respond to negativity. Bad choices can adversely affect your physical and spiritual health. Illness does not make people act right towards you. Can I blame my part on the tumor?

Just Say No to Drugs.....wish I could!

My daily cocktail

Most illnesses require medication. I’m taking quite a few pills a day. I know many other people take a whole lot more medication that me, but I’m not use to this amount and I am very uncomfortable with it.

 

To aggressively fight my condition, I take a high dosage of Prednisone, a steroid. It’s mindboggling how the medication that is to make you better will also make you sick. Prednisone has caused me to have insomnia. Because I don’t sleep much, my body sometimes crash from fatigue. That is what happened today during church. I left the service early because I felt overwhelmingly fatigued and drained. Once returning to my home, I slept for 5 hours. Currently, I’m feeling much better.  

 

Plus 14 lbs! Prednisone sucks!

Another side effect of taking high dosages of steroids is weight gain. In November I was showing off my slimmer body after losing 35 pounds. Sadly, I’m getting pumped up, literally! Since December, I have gained 14 lbs. In my Florida Evans voice, “DANG, DANG, DANG!” Roline drops salad bowl and starts crying. LOL! Oh, well! There is an alternative. Take the steroids and get better, or not take the steroids and allow my health to decline., I’m no brain surgeon, but I’ll pass on the latter. Saying no to the drugs, prescribed drugs that is, is not an option for me.

 

The extra weight brings about an extra title. I’m DIVALICIOUS and THICKALICIOUS! Yes, I love to make up words! I didn’t choose illness, but I did CHOOSE MY ATTITUDE! No worries, just trusting God because I know this is for His Glory!  

 

 

Uncovering the truth......

Monday, I posted a picture of myself after having the remainder of my hair cut off. I appreciate all of the wonderful compliments by so many, however, I soon realized some did not know that I took the picture at an angle hiding the “real story.” In other words, the picture looked like I have a head of hair. Not so. I’m finally getting the nerve to post the real deal! After looking at the finished work of my haircut, I told the barber that he should carve my name or some designs into my hair. LOL! He said he wouldn’t do it. It already looks like it has “designs gone wrong!” LOL!

I’ve grown to like wearing scarves wrapped around my head in different styles. I would love to go without wrapping up my head but, 1) my incision area and balding can’t take the weather and 2) I don’t think I can handle the shocked faces, stares, and/or pointing (I’m just keeping it real).

Last December, I remember attending a funeral after being diagnosed. My face was very much twisted and shifted from the palsy which was caused by the tumor. A woman who usually converse with me approached me to say hello, but she quickly turned away and left me standing there alone. Since that time she has blessed me with calls and sent gifts to my home. I’ve seen her several times in church, but she noticeably avoids me. I believe she can’t handle the way I look and I understand, but it feels like rejection. Maybe I am sensitive, but in that moment I felt like I looked offensive. To protect my emotions, I choose to keep my head covered when in public, because although unintentional, the look I got from the lady at the funeral wounded me. I don’t want to get “the look” again, so I’ll just keep my jacked-up post-surgery hair covered. Thankfully, I do like the scarves.

Here is the real me. Drum roll please:

More Miles for Your Marriage

A friend is excited about the idea of his Ford truck reaching 400,000 miles. He is happy with and proudly brags on his truck. Even though the Ford performs at its best, over the years regular maintenance, attention, and care has been administered to prevent the truck from failing. The same should be with a marriage. You will only achieve longevity through proper maintenance of your marriage. Too many marriages are breaking down because of a lack of attention. Marriage ministries, conferences, and workshops are good ways to tune-up your marriage. It will be an investment that will yield a great return and you’ll have a marriage you can proudly boast about.

Meltdown Monday

My doctor advised me that I would most likely lose more hair. I‘d already lost all of the hair on the top of my head and had a few bald spots hiding under the part of my hair with length. I was very excited about getting the remaining strands of my hair cut off today.

About 3 hours prior to the appointment with a barber, I became overwhelmed and began melting down with sadness and other distressing feelings. My mood had nothing to do with getting a haircut. Although I wish my hair was just as it was pre-surgery, I AM NOT MY HAIR. Getting the hair cut represents change. For me, this change is in my lifestyle because of an illness. Today I was confronted with the reality of illness in my life. That is what overwhelmed me. I’m a pretty strong woman, but some days I have those “I can’t believe this is happening” moments of reflection.

I am happy with my hair cut, even with the obvious bald spots.. I no longer look like Krusty the Clown. I could shout right here! LOL! Never say never. I said I would NEVER go natural. Creamy crack would always be a part of my hair. Oh, well. Let’s see what this natural hair is going to do. In a few months, when I am able to choose between being natural or returning to the hair crack, who knows what I will do. For now, my right to choose has been taken away from me. I shall overcome! LOL! Tumors suck!! LOL!

When I first looked in the mirror after getting my haircut, I said “I really look like my sister! What do you think?

The oldest of the Acox siblings on the left. I am 18 months younger.

Bad Day, Good Day....I'm Good!

Yesterday was not the best of days. At 5:00 pm, I finally acquired the energy to get out of bed. I felt exhausted. I spent maybe a total of three hours out of bed. It really was an “I’m not feeling it” kind of day. The only good thing about sick days is the fact that my husband really lays the catering on me thick! He spoils me and I love it! I don’t sleep much at night. This fact is contributed greatly to my fatigue. I suspect, as doctors warned, the many different medications I am consuming coupled with my sleeping scheduled being thrown off post-operative is affecting by ability to sleep. A friend gave me a few helpful suggestions for sleeping to try last night. I will utilize those methods again tonight.

Today was much better. I was able to attend my church’s worship service and Sunday School which I did not teach. Notice in my picture, I'm rockin' a scraf wrapped in a way I am not accustomed to. Since I got to wear these things I figured I'd best learn some cute ways to wrap it up. I didn't do a bad job. LOL! Not being able to drive really sucks. Sunday is a working day for my husband, therefore, he is at the church for all three services. My children were all out of service today. Thank God for a good friend who agreed to drive me home after Sunday School.

It was so good to see so many people. Gosh, I really felt the love of my church family today and I am so glad I had the strength to greet so many. On the flipside, it was a little scary to be in church today because it was my first time going into a very large crowd without a walker or cane. I am very happy and celebrate how I have progressed to this stage in my recovery, but I was nervous in the large group.

Tomorrow, the rest of my hair comes off and I am looking forward to it. I'm grown tired of this Krusty the Clown look. I literally have a huge bald spot on top of my head, a little hair on the sides, and it's unevenly tapered in the back. LOL! Every time I look at my hair, I have to really Laugh Out Loud!

Allow me to leave you with this: All brain tumors are not the same. There are different types, such as glioblastoma, meningioma, adenoma, and so on. They can be located on different areas of the brain and affect different areas of the body.  All brain surgery is not the same. One can have a relatively small incision or a very large incision located atop the cranium, side, or even back of the head.

Each individual with a tumor can be affected in DIFFERENT ways. I have had numerous caring and well meaning people to lovingly say to me that their loved one “had the same thing,” therefore my recovery will be just as theirs, even without the benefit of knowing the details of my condition. Having a tumor, as with any illness, is not a one size fits all journey.  I too use to believe a tumor was a tumor until I was diagnosed and educated.  

Love you all dearly and thankful for your prayers!

Roline

Doctor's Visit........I've exhaled!

Yesterday, I had an appointment with a rheumatologist to see if my illness/tumor has affected other vital areas of my body. I was very nervous because of the idea of facing chemotherapy and/or radiation.  Yes, I trust God, but the idea of needing aggressive treatment was unsettling. 

Rejoicing BEFORE my doctor's visit.

I got good news! This lifelong disease (neurosarcoidosis) I have is treatable with medication and is only on my brain.  Most of the tumor was removed, but a sheet of it remains resting over the right and left frontal lobe atop a vital vein. There is no need for chemotherapy or radiation. Thank you Lord! I will have to remain on steroids for the rest of my life. I do know God can work a miracle and heal me completely.

A weight has been lifted! I’ve been waiting to exhale. Finally, I have gotten a more definitive answer. Shucks, I think I got some of my strength back during that visit. When the doctor said “it’s treatable,” I wanted to jump out of my seat and shout, but then I remembered, I have that big gash on my head that still hurt like heck! A less animated praise had to do. LOL!

My facial muscles are getting stronger. I can smile, and even show a little teeth. And speaking of teeth, the tumor has greatly affected them. Just another doctor I must go and see in the near future. Oh, well, it could be worse. The journey isn’t over, but the road has gotten a little smoother. I’m grateful.

This is for God's Glory!

Another Surgery…..

Cat after oral surgery

Today was an extremely long and tiring day. Because we were snowed in yesterday and I could not get to the surgeons office to have my staples removed, I had the remainder of the staples removed today at 8:30 am. HOORAY!!!  The thought of having the staple in over the weekend and waiting until Monday horrified me. Staples are not comfortable. Unfortunately, my daughter Cat had oral surgery scheduled at 10 am to have her wisdom teeth removed. This surgery had been scheduled before I became ill. 

 

Both my surgeon’s office and Cat’s surgery were located on the same hospital campus.  I can’t drive, and road conditions were still horrible, therefore, we (Earnest, Cat, & I) remained on the hospital’s campus for the duration of both appointments. I was glad to be able to be there for my daughter, even though my head was hurting because of the staple removal. Pain pills helped, but left me sleepy while sitting in the waiting room. My poor dear husband looked exhausted having to taxi us to our appointments.

 

We got home around 12:30, but Earnest pressed on to Wal-Mart to get our prescriptions filled. While he was out, Cat’s mouth began to bleed excessively. I forgot I was ill, went into momma mode and took care of my baby!  I had to wash her comforter, hand wash the wrapping around her face, and tend to her other needs. Once I got her settled and Earnest returned home, I went to sleep because of exhaustion. I did too much, but I had to do what I had to do.

 

Tomorrow I will be serving as a guest panelist at a local church. I must rest and prepare my mind for this. I’m tired, but I know God will hold me up. I am amazed how God continues to shower me with His favor. Even in the midst of illness he continues to provide opportunities to serve and gives me the grace to perform the assignment for His glory! If Jesus can serve while hanging on the cross, who am I not to? This is for God's glory! Please pray for ya girl!

 

Cat and I are sharing my bed tonight. I have to keep an eye on her following the anesthesia. Earnest will sleep in the spare room. Poor dear has TWO sick women to monitor. Pray for him! LOL! At least he will have a bed to himself tonight. LOL!

 

 

I AM NOT MY HAIR!

Snow, snow go away! I needed to get these staples out today! I was scheduled to have the remaining staples removed from my head today. Unfortunately the city of Little Rock was snowed in. I hope to have then taken out in the morning. I am so ready to have these metal pieces removed! They are uncomfortable and I know I would be able to relax more once they are gone.

I’m getting stronger each day, however, fatigue is still an issue. My memory is getting better and I am being challenged with opportunities to stimulate my brain. I know when it’s time to “go and sit down somewhere” because my brain will start having a tingling and/or wormlike movement feeling. It’s a weird.

I’ve been tossing back and forth on whether or not to post the pics of my incision. I didn’t want to gross anyone out. However, because I am transparent, I decided to continue in the same spirit, so below are the pics with obvious transition of my hair style. I AM NOT MY HAIR!  LOL!

My hair is abandoning me for a combination of reasons; 1) tumor 2) surgery gunk 3) meds . Will it return? I don’t know, but that is the least of my concerns.  Heck, I make bald look good!  As soon as the incision heals, I will get the rest of the hair cut off. I’m not digging this Kristy the Clown look. LOL!

By the way, I went to church Sunday and managed to teach my Sunday School Class with a full set of staples in my head.  I know some of you all think this is cra-ZEE. But why not?! I've been to Wal-Mart. Stein Mart, and a few restaurants. Why not slowly and cautiously integrate back into Kingdom building? This is for God's Glory and I'm serving on God's grace.