So, I spent much of Tuesday playing telephone with multiple agencies withing the Banner University Medical Center (UMC). The first call I received was from a gentleman from the Interventional Radiology Clinic (IRC). He wanted to know if I would be available Wednesday (the very next day) to have my port and PEG inserted. Just as a reminder... the port is an IV line that will run into a cardiac vessel for easy access while going through chemo, and the PEG (Percutaneous Endoscopic Gastrostomy) is the feeding tube that I will soon rely on once the radiation burns enough of my throat and esophagus that I can no longer swallow.
I had to inform the gentleman that I had an appointment already scheduled for Wednesday morning at Radiation Oncology for my CT Simulation (SIM) and mask fitting. He inquired about the time of my appointment and when I might be done. I told him it was scheduled for 0900 and was expected to last approximately an hour. He asked if I could come straight to the IRC immediately following for surgery. After a moment of hesitation, I told him yes.
I was in the middle of texting Jessica to inform her I was having surgery the next day when my phone rang for a second time. It was one of my Medical Oncologist's assistants. She wanted to know how I was doing and if there was anything pressing I needed to report to them. I informed her that the IRC contacted me and requested that I have the surgery for the port and PEG placement on Wednesday. She was a little taken back. She knew I was going to get the PEG, but she did not think my Medical Oncologist wanted the port. She asked who requested the port, which I replied, "Dr. Radiation Oncologist." I informed the assistant that the radiation oncologist had told me he would submit the request for port and PEG insertion, but not until he first got the go ahead from the medical oncologist. Clearly... there was a lack of communication or someone dropped the ball. Probably both... Again I am pleased to know the military is not the only organization plagued with these types of problems. The assistant asked that I remain available through-out the day because she wanted to double check with my medical oncologist about the port. She was sure I was to have the PEG, but she was almost certain a discussion had been had and a decision made that I would not be receiving a port.
You see... a port can be great because it provides a nice big, available IV connection site without having to run a new line every chemo visit. The problem with ports are that they can open a patient up to infection. Chemo already attacks and depletes the immune system. A port only adds risk of infection and illness. For some people... like the elderly, a port is necessary because their veins become very difficult when running new IVs. Also, the type of chemo I am having is only administered once a week for six weeks. I have big, healthy veins, so having a port only opens me up to the potential for unnecessary infections.
Now... if I weren't having a PEG put in, I would fight for the port because that creates a quick and easy access point to run saline solution when I become dehydrated in the later weeks of radiation. Many head and neck patients that opt out of both the port and PEG end up getting hospitalized multiple times due to severe dehydration. I am opting to have one or the other to ensure I can maintain a good level of hydration and nourishment. My greatest hope is that my age and my ability to stay nourished and hydrated will enable me to fly through this nightmare of a treatment with lesser problems than many I have read about.
So, after a couple different phone calls between agencies, I was finally provided clear guidance. I was to go to my radiation oncology appointment, followed by a quick out-patient surgery at IRC for a PEG placement (no port).
On Wednesday morning, I instructed Connor to pick Jacee up from school. Something told me that even though my out-patient surgery was only supposed to last a couple hours in the morning, that having Jacee picked-up was a good plan.
Jess and I had left the house shortly after getting the kids off to school. We headed to the main campus hospital where both appointments were being held. My first stop was at radiation oncology, where I was scheduled for my SIM and mask fitting. After we checked-in, Jess and I took our seats in the waiting room. Jess had to use the restroom, so I sat there doing what I normally do-people watch. A man walked in with a child in his arms. He looked like a biker. The child appeared to be a girl based on the purple blanket she was wrapped-in, but it was difficult to tell since she was completely bald. I can only assume she also is a cancer patient from next-door where the children's hospital is located. That little girl reminded me there are many people in this world struggling just as am I. I can't imagine a child of her size going through the procedures I will soon endure. The entire moment filled me with a range of emotions.
I wasn't in the waiting room long before being called back by one of the radiation technicians. My first stop was a phlebotomy room, where I was given an IV. Because of the way I had to be positioned for the SIM, I was not given an IV in my AC vein. Instead, the tech ran the IV in my intern vein, which is okay, but hurts a little more than the AC.
Once hooked-up with an IV, I was sent back to the waiting room until the technicians in the CT imaging room were ready for me. Again, I wasn't waiting very long before I was once again summoned.
The room with the CT scanner was much different than the room I had my other scan completed. This room had other pieces of equipment I could only imagine were used specifically for the preparation of radiation patients. In the corner of the room I could see a big tub of water. The temperature of the water was reading 158 degrees Fahrenheit. There were two technicians working with me. One was a slight overweight gentleman that had clearly been doing this for a very long time. The way he talked about the procedure screamed expert. The other technician was a shorter gal who was extremely nice. The two of them began explaining what I was about to experience.
First, they would have me lay down so that the back of my head would sink down into a hot piece of plastic. Next, they would place a padded tongue depressor in my mouth to keep my tongue from moving. After that, they would bring over a large, hot piece of plastic mesh that would then be placed over my face and shoulders, then molded to a tight fit. Last, they would run me through the CT scanner to ensure my position would meet the needs of the radiation oncologist. These images would also be used by the oncologist to direct the radiation beams, which are accurate to a precise millimeter.
Before starting the procedure, I had to remove my shirt, otherwise it would have gotten very wet from the hot plastic mesh. As they had described, the entire process went off just as they had described. There was a big fan blowing on me while they placed the hot plastic to prevent it from burning my skin. I get steam towels at SportsClips every two weeks, so I was used to having a hot compression on my face. To be honest, the hot plastic felt nice on my neck, which is suffering from a major case of lymphedema. All-in-all, the procedure was quick and painless. The only part of the entire process that I would say was uncomfortable was the contrast dye the techs pumped into my veins for the CT scan.
The entire appointment was supposed to last an hour, but I'm pretty confident Jess and I were out of there in about 45 minutes. When it was all said and done with... I left having a hard plastic mold of my head and face ready for when I start radiation. The female technician informed me that she and another gal would be my assigned radiation technicians during my upcoming treatments, which start on May 16th... one day following my first chemo treatment. I kinda wish it would have started on the 15th though; that was I would start on a Monday with my first treatment, and end my last treatment of a Friday. Oh, well.
I returned to the waiting room to retrieve Jess. We had to hike one building over where central check-in for the radiology clinic was located. On our way there, Jess and I discussed whether or not we felt I would be under general anesthesia or some form of deep sedation. I liked the idea of being completely out of it, but I wasn't so hip on the idea of being intubated (having a breathing tube inserted into my airway).
When we got to central check-in, I had to sit down with a receptionist, who walked me through all the paperwork I had to sign. It was all the same paperwork I signed for my first surgery, so I was able to get through it relatively quick. Once completed, I returned to Jessica's side in the waiting room until being called back.
We hadn't been seated for more than five minutes before being called back by a nurse. She told Jess she could come along, which I always appreciate. We walked into a miniature pre-op staging room. I was assigned to a bed and told to strip-down and don a medical robe. I gladly put on a little show as I prepped myself for going under the knife. Once in my bed with the medical gown on, the two nurses began hooking me up to all my wire, tubes, and cuffs. The one gal was new to this section of the hospital, so she, Jessica, and I all learned of what my procedure would consist of together.
As the nurse explained what she thought I would under-go, a doctor entered into the room to interrupt our conversation. The doc asked if I had drank some powdered drink the night before. I told him I had not, nor did I receive any such instruction to do so. He replied by telling me that he had been informed that I probably had not received the drink, and therefor must undergo the more risky form of the surgery. Great! The drink I was supposed to ingest the night before was supposed to produce a lot of gas in my stomach, making it more distended and closer to the surface of my skin. The hope is that in doing so, the doctor would have a clear shot at my stomach without having to dodge any other portion of my digestive system... like a colon of intestine. Instead, I had to get an x-ray to determine if and where a window might exist where the doctor could penetrate both my skin and stomach without damaging any other organs.
So, now I'm nervous. I'm sure this is all pretty standard, but I can't help but to think I was being short changed.
While in the x-ray room, another doctor approached me and began questioning me about my previous surgeries. He was my assigned anesthesiologist. He informed me that because of the area of my prior surgery, they would have to put me completely under (general anesthesia). This means they would have to insert an endotracheal tube (intubate), which was something I was not looking forward to because that procedure often times leads to me having a sore throat for days following.
Wow. So, to recap... I am having a PEG inserted outside normal protocols, plus I get to go through general anesthesia.
It wasn't long before the doctors had my x-ray film developed and felt they had a sufficient window into my gut to work with. The anesthesiologist came over and hooked me up to some wonder gas and off I went...
I woke-up in a post-op holding area with Jess already at my side. I'm always so amazed at how quick they are to re-unit family members before the patient can even comprehend anything going on around them. I recall feeling a bit of pressure right over what felt like my diaphragm. It wasn't pain...yet, but I could definitely tell something had occurred.
A couple of nurses wheeled me back to the IRC pre-op staging area where I was re-united with the same nurses I had earlier. Jess and I were informed that we were to remain in place for at least an hour before the doctor could release me to go home; this is standard practice for anyone coming out of general anesthesia. Jess sat in the chair next to me. While waiting, I the abdominal pressure I had a few minutes prior slowly turn into a very uncomfortable pain. At first the pain came in waves... much like what I would imagine a woman would go through during child birth. After a couple minutes the pain because unbearable. The anesthesia and pain medications had clearly dissipated, leaving me in extreme agony. The pain jumped quickly from a six to a ten (ten being the worse pain I had ever felt). Remember the pain I had endured following the biopsy... where the dentist had to throw in multiple nerve blocks to calm me down? This was worse. The nurses were in a panic. Jess was scared. And all I could think was how I was going to be one of those unfortunate people that die from a routine surgery. The nurse were taking my blood pressure every couple minutes. I could sense the panic in Jess' voice as she informed me that both my blood pressure and heart rate were going through the roof. I believe at one point Jess told me my blood pressure was 168/?? and my heart rate was well over 100. Not only was the pain unbearable... I felt like I was going to have a heart-attack. I was crying and throwing down "F" bombs, with no concern for anyone else around me.
It took the nurses multiple doses of pain meds to calm me down. I've been reading into it, and I believe I may be one of those individuals that are immune to some pain blockers. Anything that derives from morphine does not usually work unless given to me in high-high doses.
Because of this little bout with uncontrollable pain... I bought myself an one night, all inclusive stay at The House of Pain. I was admitted to the hospital, which must have been very busy because it took them nearly two hours to find me a room in the hospital. I got lucky! I had my own room on the floor dedicated to intensive care patients. All the nurses and med techs were extremely nice. I had a couple bouts with some decent pain, but nothing like what I had experienced in the IRC. Jess stayed with me until around 1900 before heading home to take care of the kiddos. I laid there for much of the night watching T.V., unable to sleep because the pain in my stomach was a little too uncomfortable. The nurses tried to give me different pain meds, but none of them were successful at eliminating the lain completely.
At some point in the night, I realized that the pain I was experiencing felt a lot like hunger pains, only super magnified. I had not eaten since 2100 the night before, so it had been well over 24 hours since I had anything to eat or drink. I wondered if my pain had anything to do with not being able to eat?!? I paged the nurse and asked if I could have anything to drink. She told me that the doctor had given strict orders that I was not to ingest anything (no water or food)... which I already knew. I was hoping I could sweet talk the nurse into a cup of water.
The doctor stopped by my room at 0700. He inquired about my night, asking me about my pain, which I told him was still there, but manageable. He took a look at my PEG tube and listened to my lung sounds. I asked him if I could start eating, which he agreed to a clear liquid diet. The doctor wasn't there long, but rest assured, the minute he left, I paged the nurse for a cup of ice water. And would you believe that as soon as I drank some of that water... I felt immediate relief?
The water provided me enough relief to finally get some sleep. Jess showed up right at 8, so it was a short nap, but well appreciated. With Jess being there, I order up some breakfast. Because I was on a liquid diet, all I could get was a cup of chicken broth, cranberry juice, some hot tea, and some apple juice. I also got Jess a cup of coffee. I would have ordered her a full breakfast, but the kitchen knew I was on a liquids only diet.
It took all morning and into the early afternoon before I was finally discharged from the hospital. I had a meeting with a pain management doctor and a nutritionist before being given the go-ahead to leave. As soon as we left, Jess and I drove up the street to this killed Hawaiian food restaurant called Mama's.
So, two lesson to be learned from this whole ordeal...
1. I need food. I can not go without food, or I get SUPER HANGRY. In extreme conditions, I undergo extreme stomach cramping that uncontrollable by pain meds. (Jess informed me I would not last of "Naked and Afraid.")
2. I do not respond well to morphine based pain relievers. I've looked-up a couple articles that confirm this type of condition is legit. I would be curious if any of you share this condition? Do you tell your doctor? At what point do you start sounding like a drug addict when you start demanding certain drugs over others? Is this a common practice? I'd like to know what you think.
I, your mother, suffer from that exact same condition. Morphine does nothing for me. I learned that when I had my hysterectomy. It's a Demirel drip for me!
ReplyDeleteSo sorry you had a rough couple of days honey. I love you so much.