Tuesday, September 16, 2014

The (Unwanted) Power of the Power Port

Blood clots...Throughout my right shoulder, upper arm and neck, including in the Jugular. None are completely blocking blood flow or anything, but the bottom line is clots are a demons that live within the beast. The most likely reason the clots formed was that they placed the power port too deep into my chest, plus the fact I am a hyper clotter. As we all know, it only takes the dislodging of a part of a clot to cause a very bad outcome. I know this, however for some reason I am not too worried. I mean we have a plan, the power port getting put in was no big deal last time, so why would it be a big deal this time? What I failed to take into account was the fact that the power port is what actually caused the clots. So removal of the clotted off port could quite easily break off part of the clot. I'm not sure if it was because I didn't want to see that fact, or just did not realize it, but it never entered my mind. Outpatient surgery... been there before.  No big deal, right? I think even Lea Ann thought that way. The reason I think she was of that mind too will be explained a little later. In the mean time I have been told to basically sit and do nothing. I'm getting very good at that. Sit in my recliner and the most strenuous thing I do is use the TV remote.

The home health nurse still comes to the house daily. She is worried enough about the clots that she starts doing blood pressures and all on the left side. The right side is where all the clots are. I am still sore in the neck and shoulder area. Stiff as if I slept on them wrong, but the feeling doesn't go away through the day as it usually would. I am told that was a side effect of the clots. Until that time, I had been told to look for swelling and redness and fever in the area. Those were the warning signs of clots. I had none of that. No redness, no swelling that could be seen and no fever in the area. All I had was stiffness and soreness. Had the port been able to draw blood it is quite possible that the clots would have gone undetected. Not good. Not good at all.

During this time, Lea Ann's father and sister, Ed and Mary, had been planning to come out to visit and check on us. This is a very big deal. They are going to fly out from Illinois to Phoenix. Why is that so big? Because Ed has never been on a plane before. He would always rather drive.  Planes were just not part of his life. I have been told that he had told his wife that they would go to Hawaii just as soon as it was possible to drive there. The issue right now was that a drive from Illinois to Phoenix takes two to three days unless you drive straight through. A flight out is about 3 hours... So flying it was for two reasons. One, they get there faster, and two, Ed had had a medical procedure done not long before and he was still recovering from that so a straight through drive wouldn't have been safe or a good idea. The fact that he was going to make his first plane trip to come out to see and check up on us is a HUGE deal. It meant the world to us both! This will be woven more into the story more in just a little bit.

Two days later, I am back at the hospital getting all checked into out patient surgery.  All the usual things are happening... Kind of. Everything is being done on the left side. Blood pressure, IV, pulse-ox... everything. In fact, they put a red bracelet on my right wrist telling them to not do anything on that side. That is understandable, but the vein they have to use in my left elbow runs cross ways.That means the IV is going across my elbow instead of down the side of it. It also means that I can't bend my arm or it will block the IV. They had tried to get the back of my hand and my wrist with no luck.Three or four sticks for an IV are enough for me, and I said so. That's why they went to the elbow. After all the preparations and the visit from the anesthesiologist, the doctor comes in. He explains what will be happening and that it will take about 45 minutes as opposed to the usual 20 since there is a removal and a replacement. Lea Ann and I both nod and understand. It is what we thought. Then the doctor steps outside the curtained off area and asks Lea Ann to come out too. This is where it gets scary for her. The doctor says that this surgery will be touchy and that she should make sure she says goodbye to me before I get taken into the operating room... Just in case. What?! Why? Well because this surgery has a good chance of breaking off a part of the clot and if that happens and it gets into the bloodstream it will be... bad. Now Lea Ann is frantic. She is all alone. None of the kids came with her because we thought this was going to be a cake walk. Now suddenly there is a good chance her husband might die on the table, outpatient surgery or not. He asked her out here to tell her so that it would not work me up. That makes sense, but how can she now not show the worry to me? She puts on her best smile and comes back into the room. She takes my hand and just stands there as we watch a little TV waiting to go in. As they come in to take me, she leans down and kisses me and says she will see me later. I kiss back and say yes she will, but I don't notice how misty her eyes are. As soon as they take me in and she is taken back to the waiting room she is immediately on the phone. The first people she called were her father and her sister in Illinois. She was frantic. Her father told her to call and get someone to get over there to be with her right now. Her next call was to the boys, specifically Bill and Eddie. They work nearby and were living with us at the time. She explains to them that she needs someone to come to the hospital... Now. To the boys credit, they are there within 20 minutes to help support and comfort Lea Ann and be there for me too, even if I didn't know it at the time. This meant the world to Lea Ann and when I found out after the fact, to me as well. Shows the love and support a family should always have. With everyone there now, they sit and wait.  A little over an hour later I am in recovery. The port was successfully removed and the new one put in... and most importantly, NO complications. This is when Lea Ann told me about her little conversation with the doctor out in the hall and why the boys were at the hospital when I got out. I am glad they didn't tell me before hand. It would have worked me up into a little tiny ball of worry and nerves.

Now start more new medications. Blood thinners. I have to start taking Warfarin pills. On top of that I have to get two shots a day in the belly. The shots are Lovenox, another thinner. The hope is that the thinned blood will assist in the erosion and disappearance of the clots. I'm still allowed no strenuous activity which is nixing physical therapy for now. I am told to be EXTRA careful, too. Even a nose bleed right now could be serious because now my blood will be thinner and it may not clot as it should. I could lose a lot of blood and pass out or worse. They are setting me up to go to a Coumadin Clinic daily to monitor the clotting factors in my blood and to modify the medications accordingly to keep it within limits and not get out of control. I will start going to that clinic in a week or so. We have to get the thinners into my system first. Just be careful and try not to cut my self or have a nose bleed or even get a bruise. I also have to watch what I eat. Green leafy vegetables give Vitamin K with counteracts thinners, so I have to stay away from those. Wow, they are serious. I guess this is a bigger deal than I thought.

Everything seems to be going OK for the next couple of days. Then the nose bleed started. I have had issues with nose bleeds ever since I was a kid. The oxygen was drying out my nasal passages and when I scratched it, it started to bleed. We tried to get it to stop and did get it to a few times. Once by stuffing Kleenex up my nose (found out later that is not a good idea.  It can actually cause it to bleed more when you take the Kleenex out, it rips off the new clots and starts the bleeding all over again). Then it started again and I pinched it off and used an ice bag and it stopped again. The next day they send me to a lab because they need to take some blood to get what is called an INR count. This counts the anticoagulants in the blood. The higher the number, the thinner your blood is. Typical INR in people not on thinners is around 1.0. People on thinners are shooting for 2.0 to 3.0. The Coumadin Clinic helps to monitor and adjust the medicines to keep it in that range. I get the blood taken and they make sure I stop bleeding, then we go back home.

The next day is when Ed and Mary are to arrive in Phoenix.  Early that morning (at like 7:00am), we get a call from the chemo doctor. It is rather odd for a doctor call that early in the morning, and we know what visuals that conjures in most people's minds. She has just gotten the blood test results and wants to know where we are in relation to the nearest hospital. Why? Well, my INR was high so that they want me to go to the Emergency Room. They will call that ER and let them know we are coming. We say OK and Lea Ann and I leave soon after, scared as hell once again. We reach the ER and they take me directly back into a room. They start asking me if I had been bleeding, and it just so happens that I had been having another nose bleed, so they give me a clip to put on my nose for direct pressure. In the mean time, they have taken more blood and now there is a girl in the room who has started filling out admission paperwork. We start asking her questions, but she can't answer them. She is just doing what she was told. The doctor comes back in, so we ask him. I am to be admitted into the hospital. My INR is so high they are going to have to give me plasma transfusions to help spur coagulation in my blood. WHY?? What is going on?? We just has blood work done. The lab results that came back from the blood work yesterday show that my INR was over 14.0. WHAT?!? That has to be a misread doesn't it? If it really were that high wouldn't I be bleeding out my eyes or something? They take more blood and are rerunning the numbers as a double-check.  A little while later the doctor comes back in and says their lab shows a current INR of 7.8. Still Exceptionally high, but not high enough to have to be admitted. They are going to give me some Vitamin K. I take the vitamins then we have to wait for them to take effect. During this time Ed and Mary arrive at our house. They have to just sit and wait for us to get back, but Lea Ann is giving them updates and information as we get it too. We end up sitting and waiting in the ER for another four hours waiting my blood work to show some response to the Vitamin K. Once there is a drop in the INR, they release me and we can head back home.

Once we get back home, we greet Ed and Mary. We are SO glad they are there and we let them know it. Ed had undergone a procedure not long before they left Illinois that had left him sore and having to walk with a cane. He is in remission from bladder cancer. They stayed with us for several days. Talking and listening and laughing and even going out. We went to a local steak house and had a family meal there. It was one of the first times that I had gone out to do anything outside of medical stuff since my surgery. We even took some pictures. Ed and Mary's visit was a huge shot in the arm for both of us. That, added to the fact of how quickly the boys responded to Lea Ann's call from the hospital that day, just showed again how a family is supposed to come together and work as a team to support each other in times like this. I will never forget that. My memories may be a bit out of sequence or a little off here and there, but they are still there. I love them for it.

Here we thought we were through the worst of this, and now we're told that anything I might do could now make me bleed out, or dislodge a clot, or any number of other things that could kill me... Will this ever start getting better?

Please check back soon for the next entry!  I appreciate your sharing the journey with us!

Wednesday, September 3, 2014

Chemo and Radiation Continue... And a Problem Arises.

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!