One Last Hoop

So the results were in and it was time to prepare for treatment. My treatment plan first called for A-C every three weeks for four cycles. The A is for adriamycin and the C is Cytoxan. After those four cycles, the plan called for four more three week cycles including Herceptin, Perjeta, and weekly Taxol. When they told me the plan, they had let me know that I would also need to have a port placed in my chest. I was freaked out by this for a number of reasons. I asked what other options there were. I was told there were not any. So it was really the last step to prepare to start chemo the next week to have it placed.

I was still trying to nurse and pump as much as possible before I started chemotherapy. I even took my pump with me to the hospital the morning of the procedure so I could pump prior to the procedure and pump and dump after since I would be under anesthesia. We arrived at the hospital and did not have to wait too long to be taken back into a room. It was a bit strange from that point forward. A nurse finally came in and she was all out of sorts. She said she did not usually work at this site and was having a hard time finding things and apparently different locations do things a bit differently. She asked some of the typical admission type questions and seemed generally really confused by just doing her job. Then it was time to start the IV. I am not too wimpy when it comes to needles and that sort of thing, although I admit I was pretty nervous this morning and her general discombobulation was not doing anything to soothe me. She warned me the place she chose was going to hurt, she was going in right by my wrist bone, so I asked That Guy for his hand to squeeze. I decided to look at him. Watching his face, I may have been better off watching the needle go in it turns out. He looked horrified as she came at me, as he describes it, shaking like a leaf and poking away. Needless to say, it didn’t work. In the midst of her trying, another nurse came in to see what the delays were as they were ready to go with the procedure but I wasn’t ready to go. The second nurse could not understand why she did not try an easier access point and got me started lickity split.

So then it was off to have the actual port placed. By this point, I was getting more nervous as I was wheeled away from the shaky pot like stirring needle wielding nurse. You would have thought I would be getting less anxious, but by the time I met the interventional radiologist (IR) I was shaking like the nurse. It was nice that he came out and showed me what the port looked like and explained where the incisions would be and what they would be doing. I was not going to be fully knocked out during the procedure, unfortunately, and would be able to listen but shouldn’t feel any pain. Once they got me on the table, there were huge screens that I was able to see initially. They showed my vitals and allowed them to use imaging to see what they were doing. I was doing pretty much ok with everything until they put a tent over my face. I had to remain in a fairly a weird position so that my head was turned and they could access my upper chest near my neck which allowed me to look out a little window. Of course, I was also strapped down. From my window, I could see all sort of catheters or lines they would use for people in a cabinet. Kind of strange and not so relaxing. They did give me the anesthesia and medications to keep me calm, but I do remember pretty much everything and could feel the tugging and so forth. It was done fairly quickly.

Once I was in recovery, I had yet another nurse. I started to have pretty significant pain fairly quickly and was very uncomfortable by the time we were ready to leave after being monitored for the required time. I was not able to get myself dressed, so my husband had to help me. When they reviewed the discharge instructions, I asked about pain relief. The nurse said she had never had anyone ask that question before, and I shouldn’t expect to have enough pain to need anything. Hmmmm, interesting, but ok, this must be the worst of it I thought. Keep in mind I had just given birth and I can generally deal with pain and discomfort.  This pain was pretty significant while still somewhat numbed. Off we went though, home again to see our babies.

Once home, it was still before lunch. We had to go back out for a short time to do a quick errand, then we returned home. I took it pretty easy and continued to avoid using that arm or move too much as the pain was pretty intense. I was not comfortable sitting up, lying down, or really doing anything. I was keeping ice on it as instructed. By late afternoon, it was bright red and hot to the touch, not just at the incisions, but over the actual port placed between the two incisions. So I called the doctor listed on the paperwork with IR. Well, they leave early on this particular day apparently so it went to the after hours on call doctor. After not hearing back, I called again. Still no return call 90 minutes later. By this time, it was late enough in the day that all doctors would be out of office and I was calling the after hours line for any doctors I would try to contact. I tried the oncologist office, and they called back immediately. They thought this sounded odd, and were surprised by the lack of pain medication suggested. They said I could use acetaminophen. Finally, nearly two hours after I first called, the on call IR contact returned my call and gave me instructions to draw circles around the red parts (which we had already done) and see if it continued to spread (it already had since I had initially called). He gave me an appointment for in the morning in the department at the hospital.

The next morning, the redness had reduced as had the pain to some extent. I called back and no one felt it was necessary for me to come in at that point, but I was to call if anything changed again. I was able to nurse and pump after a certain amount of time following the procedure that first day, which was both a blessing and a curse. As I was emptied, the pain would decrease a minimal amount; however, it was not comfortable in that area. After the port was placed and the pain was intense and the reaction of my body was sort of weird, I stopped nursing for the most part and continued to only pump through the next couple of days until my chemotherapy began.

In talking to others who have had ports and those involved in my care, I have found out that my experience is not the norm. Most people are prescribed something or at least sent home with instructions to use acetaminophen/ibuprofen from the start. I have told many people that my discomfort and pain in my experience with the port was worse than labor or recovery from either of my children. No exaggeration. Some have suggested that since I was nursing, my chest area was more sensitive or perhaps they had to go deeper into the tissue. The redness may have been a reaction to the cleaning solution they used on my skin, the tapes and bandages, having a foreign object placed in my body, or all of the above. I just know, my body really hated that thing from the start.