Third Time Was Not Such a Charm

Immediately prior to the third cycle, I started to have some new strange symptoms or side effects. For one, I was gaining weight, but the chemotherapy protocol I was on included a lot of steroids and fluids, plus I wasn’t hugely active. It wasn’t out of the question that this would be happening. Additionally, the chemotherapy caused photosensitivity so when my chest and face would appear red and blotchy, I reported it to the doctor, but there were explanations for that as well. The pressure in my neck was concerning, but they didn’t know what it could be. Over that weekend, just helping my daughter get dressed made me breathless and a purpley red coloring. Putting That Baby in the car carrier was extremely difficult since I was bending over even if I was kneeling. My puffy achey eyes were attributed to the chemotherapy. I was told that eye drops would help that, as would using my reading glasses more frequently. What concerned the doctor I saw that day the most was the sharp pain I had in my back/ribs area when I took a deep breath. There were reasonable explanations, playing with my daughter and her friend on a playground or just the Neulasta shot or a normal tweaked muscle. With a history of pulmonary embolisms, he felt that was the most concerning to him. Before I could be cleared for chemotherapy, I had to have a CT scan to check for pulmonary embolisms. That Guy had accompanied me to the doctor appointment, but he had to get to work. My chemo buddy friend for the day was able to shuffle her team to extend childcare and stay with me for the long haul. I’m telling you, it truly takes a village!

The CT scan was run STAT, so I went over immediately and waited at the testing center for the results. They were clear and I was able to go to chemotherapy early that afternoon. If all were normal, I would have been leaving at that same time I was now starting. We had time to have some lunch and then headed to the infusion center. My port would not give blood return when she tried to get started. This was the first that just one nurse had accessed my port on her own. They had always had two there, and I requested a second nurse help, but because of the time of day and I guess availability of others, that request was not taken so well. At first, the nurse checked to be sure she was in the little pot with the needle she was using to access it. She flushed with saline and I did some creative poses in the recliner and they were able to get just enough blood return to give me the drugs. After the infusion was complete, again there were problems getting blood return. I think she was able to get “pink” and sent me on my way. I didn’t get home until dinner time and I left well before breakfast. Thank goodness for our friends and family. I walked in the door and just wanted to cry. Luckily, my chemo buddy had also given us a delicious baked ziti dinner we had frozen to use on a night when nothing went right. Guess what we ate at the end of that day! I might have just cried from exhaustion and frustration. Something wasn’t right, but everything had been checked and I was just beyond tired physically and emotionally after a day like that.

I wish I could say the days between this cycle were normal and routine like the first two cycles. It seemed as if I were in the doctor’s office every day for something somewhere. I had an endocrinologist appointment from previous check ins, but nothing acute to discuss. I had a routine eye exam with nothing new found and no prescription change. I also started to develop a rash in the area of my port. Not at the incision sights from the placement, but actually over the port. It was red, hot, bumps, and became somewhat painful. I called the oncologist and they recommended an antibiotic cream to try. I went to the office a few days later when it was not resolving. I was seeing my regular oncologist again today. He had been out of office at the pre-chemo CAT scan appointment. I made it clear that in addition to the rash, the other unresolved symptoms were still occurring. Sometimes worse. The solution for those items (discoloration, back pain, breathless, dizzy) was to just not do what was causing them. Take it easy. Drink more water. They had several people observe the rash in the oncologist office and they were not sure, but they could determine that it was not an issue with the drugs not having entered the port and causing skin deterioration. Good news, right?! They thought maybe it was a reaction to the adhesives or numbing spray.Since nothing was obvious, and there were problems with blood return, they send me to Interventional Radiology (IR) to have a Port Study done. This entails a dye being run through the port to see that it is all in one piece and that all is working properly. They found nothing out of the ordinary with the exception of a fibrin sheath. My understanding is that it is a fibrin materials form kind of a scab around the end of the sheath. With a history of blood clots, I asked a lot of questions. They definitively felt that it was not the same as a clot. For more information, this looks reliable here based on my understanding now. To resolve the fibrin sheath that was found, I had tPA run through the line for one hour. This was all done the same day as my eye exam in the morning. An immediate appointment with the oncologist office and then a trip to IR that took a few hours. Can I tell you how much tired I was yet again that day?

As for how the rest of the family was doing through this, That Baby was doing very well. She had started to sleep through the night. All was well in her world and luckily she has remained mostly oblivious to what is going on. Luckily she is too little to know mommy isn’t here as much as the other baby’s see their mommies. That Guy was working hard, and now with my declining health, doing even more than ever at home. His baseball season was wrapping up. Good for me, disappointing for him. That Little Girl was not reacting well to my feeling worse and worse. She seemed to respond by not behaving as well as her world was rocking so much and her routine was nonexistent at this point. Her summer activities had wrapped up and mommy was not doing well, but we didn’t have an explanation so it was just a lot of “Mommy can’t do that” and her observing me not doing well. I was cranky, frustrated, and tired a lot of days and that was difficult for everyone to be around.

All combined, I was so exhausted. As was the rest of my support system. One last cycle of A/C to go and then it was going to get easier they had said. And unfortunately, this was nowhere as bad as it was going to get.