Tuesday, October 1, 2013

Pet/Ct scan allergic reaction and new lump

Monday morning September 30, I was scheduled to have my first Pet/CT scan. I was allowed nothing to eat or drink for 6 hours prior to the procedure. I had woke up with stomach pain from constipation caused by the many pain medications I take, as the cause paralysis of sorts to your intestinal tract. I had been constipated for several days. I had spent hours in and out of the bathroom, in pain until eventually I was able to go move my bowels. It was very painful and contained blood due to the straining, but after the initial constipation then the bowel is very loose. I tell you this because I am trying to honestly depict the true suffering patients such as me endure, things that are not spoken about, the things we suffer in silence. I was in a lot of bone pain as well. The doctor had added an opiate based Fentanyl pain patch I now wore around the clock to the existing opiate I took every four hours for breakthrough pain, only this patch did not stick well when I had applied it. I found out later in the day that this patch was defective and I had been without pain meds for two days without knowing. After I was able to finally leave the bathroom and pull myself together, I splashed water on my face to remove the cold sweat that the pain and exertion had caused. The phone rang and my oldest daughter Savannah’s school nurse called she wasn’t feeling well and needed to come home, so Steve rushed to get her so he could be back in time to get child number 2 on the bus. Tori started crying I believe form a mixture of being jealous that Savannah would be home and that I had to go back to the dr’s again. She cried until she got on the bus but was then fine. But it caused me a lot of anxiety to know that I would have to leave one sick 13 year old child at home and the other was distraught on her way to school. Cancer steals so much , it robs you from being the Mother you have always been. I hate that part. Mom and Dad were "on call" if Savannah needed them but she just went to bed and slept, they were also on call if we should be held up so they could drive here and get Tori off the bus.

I called the cancer center to see if they could bring me in to examine the spot, I already had an appointment with them to have my port accessed as the Pet/Scan center doesn’t access ports, and they needed to administer a sugar based radioactive tracer for the procedure I was to have. I could not reach the cancer center and was forced to leave a message after waiting several hours with no return call and getting close to the time of my scan, Steve and I decided to just show up in the hopes someone would look at the lump I had found. As we went to the back to have my port accessed I informed the nurse what was going on with the lump, she had a Physicians assistant come back to the access room and examine it. Her thoughts were that it was an infection but was unable to express anything from it to send for culture. She advised me to apply antibiotic cream and show my oncologist on my Wednesday visit. If it had not cleared by then I would need to see the surgeon again. It was the physicians assistant that discovered that my pain patch was not working. We had no time to go and get a new one as it was now time for my PET Scan.

At my appointment with the Medical oncologist earlier that week I had addressed my fear of this test as I had a severe anaphylactic allergic reaction to an MRI previously. She decided pre-medication was not necessary.

We arrived for the scan around twenty minutes early filled out the necessary paperwork and took a seat. This is the same building I will be having my radiation. I am set to have an appointment here in two days to find out the radiation start date.

The nurse came out and asked a few questions, at that point I again expressed my concern about an allergic reaction. But she said it was just a sugar based compound with a radioactive tracer added and I would be fine.

Another technician came out and led to me to a portable PET/CT unit outside the building in a trailer of sorts. She placed me in a recliner and walked over to a metal box with a glass shield for her to stand behind. She used gloved hands to fill a metal syringe with the radioactive tracer and then dropped the vial into a metal container and locked the lid... Hmmm, I thought doesn’t look so harmless to me. Anyways, she then walked over and injected it into the tubing connected to my port. I was told they were running 45 minutes behind. I had to sit there for 50 minutes for the tracer to go through my cellular system. So, I sat there a long time, in pain because as I stated earlier I my pain patch was defective but we had no time between appointments to deal with that yet. I had taken an Dilaudid orally but it was too low of a dose to help with the pain and it upset my empty stomach. But, what choice did I have but to dutifully sit and wait for them running late? So sit I did. I tried to dose but it was freezing in there. It was a very small cubicle with the place the tech had filled my radioactive vial, and two recliners with a curtain between them. There was another patient on the other side of the closed curtain.

Finally, it was my turn to be led through a small hallway and into the scan room. I was told to lay on a table. The Tech asked me if I could hold my arms over my head for the entire procedure which would take approximately 25 to 30 minutes. She said that ot would give far better films than if my arms were down. And since I had lymph node involvement under my arms I decided it was in my best interest , despite the pain to do so. She stressed I had to lay completely still and could not change the position of my arms throughout the procedure. About five minutes in I realized just how hard that was going to be to accomplish. The neuropathy that the chemo had caused as well as the incision pain had my fingers first numb then throbbing with nerve pain. I prayed non-stop not only to make it through, but that nothing would show on this scan. Cancer cells love sugar so they would travel and accumulate in areas where there was cellular change such as a tumor, the radioactive tracer that was bound to the sugar would then light up and show on the scan as an are of question. I managed to make it through the test but was very un comfortable and covered in cold sweat for the sheer determination it took to make it through. I was told I was finished then led back to the waiting room to where Steve was waiting for me.

The Pet Scan lab does not access or de-access ports. So we than had to go back a mile or two down the orad to the cancer center to have them take the access out. When I got there I sat in a recliner and the nurse pulled my collar down to reach the port. She got an alarmed look on her face. I guess in all of my misery I had failed to notice that I was in the midst of a full blown allergic reaction. Thank goodness I had to go back to that chemo center that day where they could help me.

I was immediately surrounded by a very concerned husband, many nurses, my Oncologist and her Assistant. I was red with a raised rash all over my face arms and upper chest,back, and arms. I was nauseated, in pain and all around miserable. When the sweet nurse manager at the center came to my side. I cried and relieved some tension and told her how tired I was of all of this. That this viscious cycle never seemed to have an end. I was treated with many meds, lone of which was a mega dose of steroids. Which I hate. They keep me up for days. And they and the taxol have caused me to gain 30 pounds over the last 3 months. I have never been overweight and this weight gain though though I am certain was partially attributed to my inactivity was not due to overeating. I had been carrying around a lot of water retention as well. So much so that two days prior, my Hubby had to but my wedding band and engagement ring off with metal cutters as they were turning my finger purple. I had managed to keep that ring on throughout this whole process it had never left my finger other than cleaning from the day he placed it there...it was like a part if me. I cried myself to sleep that night over it.

After a short while, the Oncologist decided that she wanted even more steroids pushed by IV to get them in my system fater as my tongue was beginning to burn and swell. When the nurse pushed the Decadron steroid via I.V. it caused a burning in my genital and anal area that I will not soon forget. I said um, I have a very weird burning going on down there as I wiggled to try to not let my bottom touch the chair. They had to giggle as they said it was normal. They said an older lady had the same sensation one day when treated and told them she had been out of action for so long that she kind of liked it. That did make us all laugh and broke the tension a little. But you know, they could have warned a girl.

A little while later and with not enough improvement I was on my way to the emergency room. Which thankfully was right across the road. I was promptly placed in an observation room. As I was waiting to be seen I overheard the nurse on the phone with many people trying to find the poor old gentlemen in the curtain next to me which I could not see a ride back to the nursing home he came from. His insurance would not pay for ambulance transport because he was able to sit up in a wheelchair. So the only way he could get back to the home was to pay $25 measly dollars that he did not have. This sickened me. So I had my husband call the nurse into the room where I tried to hand her the money to get this poor man home. She said it touched her heart that I would do this, but she was not allowed to accept money from me. Thankfully she was able to get him transported by a wheelchair van about an hour later.

I could see through the opening that she told another nurse what I had tried to do. The nurse came in and chatted with me for a bit and realized that her and my husband had known each other growing up. Before she left she gave me a big hug and her personal cell phone number in case I would ever need anything at all. Touched me deeply.

The doctor came in and was a very kind man, he gave me another mega dose of steroids. Then replaced my pain patch and gave me nausea meds via my port. Bu when it came to the Dilaudid he only gave me half my normal dose saying it would work well enough. I tried to explain to him I had been without pain meds for two days and had a big ordeal all day long. The nurse comes in to administer the meds and I realized he did only give me the half dose pain meds. I tried to give it time to work but it did not. Frustrated and aggravated to again not have my pain properly addressed I spoke up for myself for once. Called the nurse back in and asked her to speak to the doctor and ask him to give me the proper dosage which is the amount I had on the bottle he was shown when he first came in, so I could at least make it to the car and back up the steps to my bed. He gave in and she came back with more nausea meds as well as the pain med. But that added another 45 minutes to our hospital visit.

When the nurse was administering the meds she told me her Mom had ovarian cancer 16 years prior then got breast cancer and died at the age of 42. One year younger than me...this nurse was not very old, and my heart ached for her. I pictured her being around my oldest daughters age at the time, and it really hit home. She said her Mom did not have chemo at that time. I asked if I could hug her and told her how sorry I was and she teared up a little. I am sure that is why she is the wonderful and compassionate nurse she is. Yet,I hate this terrible disease.

This is the day after my reaction I am still heavily medicated but am home in my bed. The steroid again has me unable to sleep, so I decided it was a good time to get back to telling you my story.

7 comments:

  1. Hugs, my sweet and brave friend! You have endured way to much for any human to have to live with! I keep you in my prayers!

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  2. Continued love and prayers Jeannine ♥

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  3. I wish there was something we could all do for your physically Jeannine. I am so sorry you have to go through this. I just don't know what our country is doing with our medical and pain care. God Bless You. ♥

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  4. Thank you so much ladies. You mean the world to me. I am so blessed to have such wonderful faithful friends and prayer warriors. I am down, but not out and NOT giving up. I love you all very much.xo

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  5. Thank you so much ladies. You mean the world to me. I am so blessed to have such wonderful faithful friends and prayer warriors. I am down, but not out and NOT giving up. I love you all very much.xo

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