Hello again everyone! I'm back! I apologize for the length of time between the posts. Nothing bad happened or anything, just have been exceptionally busy with a new grandson in our house along with our oldest daughter, our youngest staying the Summer here, visits from other family members from Arizona, family visits and functions here in town now that we are near Lea Ann's family again, and a few trips into Missouri, too. Not to mention my day job has been extremely busy as we are short-handed, so everyone is up to their ears. Life is definitely getting back to normal. I love it!
And now back to our journey...
Chemotherapy continues once a week. Every Monday morning we go in and I get hooked up. It takes three to four hours most times with all that is being done. That is typical. The people that work at the center are absolutely great. I could not have asked for better. The people getting the chemo with me are just as nice and very personable. Everyone smiles and talks and is very.... Real. That is the best word to describe them. Every one of us in that room, the patients and their caretakers and watchers, are sharing a very raw experience. Talking helps to pass the time and take the mind off the sickness. Honestly, at least for me, the talk tends to center around anything else. I would rather not talk about the cancer or anything related to it. I want to have small talk and chit-chat and joke around and smile and laugh. That seems to work for me, and others seem to fall into step with that, so I take it as a sign that we are having similar thoughts. Every afternoon, Monday through Friday, I have to come back to the same center for the radiation treatments. We wish that I could have gotten times loser together on Mondays, but schedules are schedules I suppose. We do tend to cheat and ask the nurses to ask the radiation side of the house if I can sneak in early for the therapies on those Mondays so we are not driving so much. It works maybe half the time. We'll take anything we can get.
One thing that we are finding is that, contrary to what we expect, I actually feel better after chemotherapy. We have no idea why. Neither does the chemo doctor or the nurses. They are chalking it up to each person responds in their own way. I am one of the lucky ones. I'm not getting sick, at least not yet, and I am not losing much hair, though I do notice quite a bit in the shower in the morning, but I am definitely not going bald. Lea Ann thinks that the reason is that when I get chemo, before they start the drugs, I get a large bag of hydrating saline and also a bolster of Magnesium. The day of chemo through about two days later, I tend to feel really good. Appetite is up, mood is better, energy is up, I even try harder at physical therapy and my exercises (when I do them). Come about Wednesday evening I start losing that steam and get tired quicker and run down. Appetite gets less and my moods get more erratic. This happens every week that I have chemo. Based on what I had heard and seen, I really am a lucky one in that regard.
Radiation is a daily 30 minute drive for a 10 minute procedure, then 30 minutes back home. I understand it is necessary, but it gets tiresome at times. We want to make sure nothing comes back so they are doing this to clean up anything that may have been left. I admit that I get a little down on myself during these sessions. To be honest it is over a pretty minor thing, too. I can't sit up on my own after the sessions. I lie on my back for the treatments, but I can't sit up from that position. I always need help. That bothers me a lot more than I want to admit. I mean I know that my stomach and back were both cut open and it will take a while for that type of mobility to come back, but I still think I should be able to do it.
The third Monday of chemo. I go in as usual, but they want to take blood for blood screening before chemo starts. This should not be a big deal. They can take the blood from the power port before starting to infuse the chemo drugs. It can all be done through the same single stick. I am starting to like this power port idea. They prep the port site, spray the cooling gas onto the sire to deaden it a bit so I don't feel the stick, then insert the port tubes. All the same as usual. The nurse leaves, then comes back with several vials to fill with blood for the tests they need. The connects the syringe to the port and starts to draw some blood. Nothing comes out. In fact, when she attempts to pull back on the plunger of the syringe, it will not move at all. She frowns and tries a few more times, then sighs. I ask if there is an issue. She says most likely she missed the port with the tap needle. That means she has to take it out, and I get another stick. Oh well. I can take another stick. The nurse says she is going to get the shift leader to try the next stick. That makes sense to me. Get the most experienced person to handle the possible problem issue. Seems to make sense to Lea Ann too. Soon the shift leader comes over with the longest tap needle they have. Its almost two inches long. That is a little intimidating, but the nurse puts me at ease. She preps the area and sticks me again. This time she tests the entry by injecting a bit of saline into the tube to make sure it is in and seated properly. It is. Now we'll try to get the blood drawn again. She sets up the hardware and the vials and tries the blood draw. Same issue. Nothing is coming out. Again the plunger in the syringe will not draw anything out. Nothing at all. The nurse frowns and tries again without luck. She tries infusing the saline again and it does take that in without any issue, but it will not draw no matter what they do. She mentions that in order to save time, they will draw the blood from my arm and she will ask about what would cause this issue. I agree and they take blood out of the crook of my elbow, then hook me up to the usual for the chemotherapy. After that, I actually forget about the blood draw issue. The rest of that week goes pretty much as usual, however I start noticing that my neck is getting sore and stiff and my right shoulder is starting to hurt. Especially in the mornings. I used to get that way from time to time, so I just thought I was sleeping in the wrong position and was getting stiff. After all, I was now having to sleep on my back all the time and also with blocks under the head of the bed so I was at a head up angle due to the surgery.
Week four of chemo. We go in at the usual time and do all the usual set up and everything. The nurse says they want to try to draw blood again. I suddenly remember the issue they had the week before and ask if they figured out what the problem was. She says they think it may have been clotted off and are hoping that it has cleared in the week since. They hook me up again and... same conclusion. Nothing will draw at all. They call in the doctor to look at it. She tries and gets the same result. Now Lea Ann and I are getting a little worried. The doctor takes us back into a private exam room and pokes and prods on the site, which was pretty uncomfortable, but needed. Her thinking is that the port has clotted off on the draw side. If that is the case they can't guarantee that the chemo is getting into my system properly, so she is suspending chemo today and sending me to have an ultrasound done on the and around the port. Now I am worried. They must have a worry about it too as I get an appointment that afternoon at a local imaging center.
Two hours before radiation, I go to the imaging center and get called back into the ultrasound room quickly. The ultrasonographer comes in and stops short when she sees me. Apparently she was expecting a female. I explain the situation and she starts the procedure. She small talks during the 20-minute procedure, then reviews her work. As she is looking at it, I casually ask if anything looks odd. I really don't expect a response that I would be able to understand, if I get one at all. The techs are good at saying they are not doctors. However, in this case, she actually tells me that I have several blood clots throughout my shoulder, upper arm, and most importantly, in the Jugular Artery. She will be sending her findings to the chemo doctor in a few minutes and I am to talk to her about it after my radiation therapy this afternoon. She can't tell me anything else because she is not a doctor. Now I am even more scared. Clots are one of the things they were very afraid of when I was hospitalized. Now I suddenly have several, and with one in the Jugular, I am in major danger. I leave the imaging center and tell Lea Ann what was found as we drive back to the cancer center. She is as scared as I am. All it takes is one of those clots to break off, and I could very well die.
After radiation, which was unusually quiet, we are escorted back into the chemo doctor's office. She explains that there are four good sized clots through my shoulder and neck. The stiffness and soreness I have been feeling were side effects of those clots. It is likely that the power port was set too deeply and my body clotted off all it could. I was told that I am a hyper blood clotter anyway, and chemo can make that even more so. She is canceling my chemo for today and for next week. She will be calling the surgeon to set up an appointment for me to have this port removed and another put in in the left side of my chest. She is also putting me on Warfarin pills to thin the blood as well as Lovenox shots that will need to be administered in my belly. These will thin my blood and hopefully help to erode these newly formed clots. The medications will start the day after the new port is put in. The surgery will be set up for tomorrow or the next day at the latest. Later on I will have to start going to a Coumadin Clinic to have my blood monitored for the thinner factors in it and to manage the medication, but that will be in a week or so after the replacement port is installed. In the mean time, no excess movements or exercising, stay relaxed and keep the blood pressure down. She is not expecting any issues with this, but then again, she was not expecting this to occur. She reminds us that every situation is different. She will have to surgeon's office call me with the time of the port replacement surgery.
The drive home is tense. There is not a lot to say. Lea Ann and I both know what a blood clot can do to a person, and that is now a very real possibility for me. When we get home we have to call the physical therapist and cancel the session and give him the reasons and findings. The home health nurse is informed as well. She explains the issue and possibilities to us, and suggests that I stay in my recliner as much as possible move around as little as possible. This situation could get very bad very quickly.
Now I am really scared.
Thank you for reading along and coming on our journey with us. Please check back for my next entry. I promise it will not be as long as the last gap!