Connie (Mrs. WebSlave)

Well, I actually thought today (Monday) was going to be not too bad. Nope.

Connie has been having trouble breathing and a persistent cough is creeping in on her. She is also worried about the swelling in her left leg/foot. So she texted the nurse (Marissa) who is sort of our contact point. Never got a reply from Marissa, but the office called and told Connie she had and appt at 3:15pm for an ultrasound of her legs, and also a chest x-ray which would be fit around as available at Radiology Associates. So that took up the better part of the day. Not that we got up all that early, as it was another rough night sleeping.

So she got the x-ray first, and then shortly after the ultrasound. They said her oncologist would have the results of the x-ray in a day or two. As for the ultrasound, the tech seemed puzzled because the blood clot in Connie's left leg wasn't there any longer. She called in another tech to check her work and sure enough, the clot was gone. So is this good news or bad news? I figured we would be hearing back from the oncology center shortly so we would just wait it out. Of course, I started researching blood clots on the internet and learning more than I ever want to know about pulmonary embolisms.

Time dragged on and still no word, so I texted Marissa to find out what was going on. What about that vanished blood clot? What did it mean? And would that x-ray show that embolism if that was taking place? Connie was having shortness of breath, coughing and lately a pain or two in her chest area. Which seemed to fit the bill for that embolism. Apparently Marissa is assisting in surgeries on Mondays and Thursdays, so I got a text around 8 or 8:30pm. Marissa said that the x-ray showed Connie had pleural effusions, but didn't say if it was the same right lung that she had that before, or in both lungs. Damn.... So the fluid is building back up that she had aspirated before. How long was that? Beats me. Time doesn't work so well any longer.

So Marissa if we got the notice of the scheduled Thoracentesis (sp?) for tomorrow. Well, no... First we had heard of it.

Long pause in the texting.

Then she mentions that they will be talking to us about the scans and a plan of treatment during the meeting we have scheduled for tomorrow (Tuesday). What meeting? First we had heard about it. Long pauses in the texting. Apparently we have a meeting at 1:45pm with Dr. Ellison (the surgeon/oncologist). I guess we were supposed to know about this via telepathy.

I am beginning to feel that Connie's life is in the hands of some frighteningly incompetent people. Right about then is when I broke my streak of not taking any valium for a few days. Problem is that the people she is seeing and the facility is supposed to be the best around for oncology issues. But damn I am just not getting any sort of warm and fuzzy feeling about this. I am thinking I may have to take a pocket full of valiums to the meeting tomorrow to keep me from going ballistic on those people. Either that, or if that meeting is just filled with nothing but real bad news, melt down to a jelly fish in the middle of the floor needing to be carried out in a bucket.

If there really is such a thing as the Mendelian Effect I am ready for a different universe, please.

Guess I had better get to bed. I think tomorrow is going to really suck. My heart weighs just way too damn much.

(((Rich)))). I am so sorry to hear about the breathing problems Connie is having, that is serious and if it is a pulmonary embolism that can be very serious. The issues you are having with your treatment team seem to center on some communication deficits and they need to fix that immediately, and you should bring that up in the meeting and also ask Marissa to text you notifications of all appointments as a backup.
I am waiting to hear what happens at the meeting with the oncologist and the treatment proposals.
If the breathing issues get worse, don't wait for an appointment, go to the hospital.

Connie got a call this morning to let her know she has a thoracentesis scheduled for 11:30 this morning. It is taking place at the same place she had the chest x-ray and ultrasound done yesterday. Radiology Associates. I didn't know they did surgical procedures there, but heck, what do I know? I am in deep uncharted waters. We still have the meeting scheduled for 1:45 with the oncology team, as far as I know.

Connie was up about every hour to hour and a half to have to pee all through the night, so neither one of us got much sleep.

Before everything started coming apart, we made arrangements for a delivery from Publix this morning early. We were getting ready to place a curbside order pickup at Walmart for other groceries but things got screwy before we did that, which is just as well.

I am sorry you did not have a good day today. I'm sure Connie is too.

What information did you two get from the thoracentesis and oncologist?

Well, today was a mixed bag. Got Connie to Radiology Associates and they took her right in. Wouldn't let me in the operating room, though. But the procedure seemed to go smoothly. They said they were limited in the amount of fluid they could extract, so I am not sure exactly what that meant. Last time it was 2.6 liters. They did do another chest x-ray afterwards, and seemed satisfied with what they did extract. During the meeting with the oncologist, we discussed this and she said this is not unusual. It normally takes about 3 weeks after chemotherapy starts to cease with the lung sac renewing the fluid, so since Connie's first treatment was just a week ago, I guess it is possible she may have another episode to go through with this fluid extraction thing. It is only her right lung, so the oncologist says this usually rules out congestive heart problems, since that affects both lungs equally. And they did do an ultrasound of Connie's heart while she was in the hospital and that apparently came out OK.

Connie only had one of the three chemo drugs she is due to be taking in that first session. One of the drugs they held off on because it is not advised to be used within three weeks of surgery. And Connie's surgery fell well within that time period. So that will be started at the next session on June 1. The other drug, Taxol (sp?) caused her a pretty bad reaction so they had to terminate administering it. I think I mentioned what happened then somewhere above. They have an alternative drug to use, but the oncologist told me they do not store the chemo drugs on hand, so they have to order them for each session requiring them. So Connie will be starting that new drug next session as well. So that means three chemicals being pumped into her system. They may have to physically throw me out of the infusion room, because I definitely want to be there to watch over her.

Anyway, things seemed to be going a lot better today than I thought they would. But something happened. I took the trash out to the garage, and when I came back in I could tell Connie was all upset about something. Apparently her family is about to drive her crazy. I know they are all upset about this too, but one is trying to set up some sort of group texting method so Connie can text everyone at once. But some don't want to be part of such a group, and want the personal touch of one on one. Then some that Connie hasn't heard from in quite a while are pissed because they aren't on the list. And then one relative wants Connie to do something on some web page called "Caring Bridge" or something like that. And others want her to open up a facebook page. Basically turning this all into some kind of circus. Connie doesn't want any of that sort of crap. And it got her highly agitated. She checked her blood pulse rate and at one point it hit 199 bpm. It was fluctuating all over the place and I could see the pulse was erratic with no steady rhythm. Damn, THAT had me worried. I thought I was watching her in the beginning stages of a heart attack. We checked her blood pressure and it was fine, but the pulse rate then was still 134 bpm. I asked her if she wanted one of my valiums. She really doesn't like any sort of drugs, but I told her that if we didn't get that pulse rate down I was either going to have to take her to the ER or call for an ambulance. I also contacted the oncology nurse about this, and her first response was to take her to the ER. I videoed the pulse rate monitor and took a photo of the blood pressure gauge. Connie did take a valium (2mg), and the pulse rate did come down after a bit after I did my best trying to calm her down. Shutting off the damned call phone was the first step. I put on some soothing music while she tried to clear her mind and maybe nap a bit. I know she REALLY didn't want to go to the ER, and I sure didn't want to have to take her there.

I made her a bowl of pineapple chunks and then she asked for another valium. Meanwhile I was keeping the oncology nurse informed on what was going on. Eventually her pulse did drop down below 80, but it still looks a bit erratic to me. The valiums were making her drowsy, so I put her into her recliner, and am hoping tomorrow she will be feeling better and her numbers looking more normal.

I didn't tell her but when I was walking over to the garage to get the Jeep to take her to her appointments, I had some really sharp pains in my chest. I know she would just worry about me, but my attitude is that no, I can't have anything happen to me. And I REFUSE to allow it. Even if my heart stops, I have to keep on going. Who else would take care of her? Probably just my own form of stress, but I have to say I didn't take any valiums myself today. When her blood pulse was skyrocketing, I almost did, but heck, I can't be spaced out if I have to run her to the emergency room.

Got to get up early tomorrow to run her back to the oncology facility. They are going to draw blood to see how the chemo is doing for her. We are probably going to be putting more mileage on the Jeep over the next few months than we have in the past few years just running to doctor appts. and such.

I should get to bed now, but I have found it best to wait until Connie has to pee, otherwise I would likely just hit the pillow and start drifting off when the urge would hit her. She still can't get in and out of that recliner by herself.

Am I forgetting anything? I am scared to death I am going to lock myself out of the house or one of the vehicles at one of the appointments. I know my mind isn't functioning all that well.

Don't ignore chest pain in yourself, see your doctor.

Look into your insurance to see if it might cover the rental of a power recliner which rises up so the person sitting is almost in a standing position. In addition, there are bedside/chairside aluminum potty chairs and absorbent comfortable disposable pull on briefs, both fairly inexpensive if purchased on Amazon instead of a medical supply store, but likely covered by insurance. Think about a shower chair also, to make bathing safer and more comfortable during this time of treatments.

My thoughts and prayers are with y'all.

Originally Posted by Lucille

Don't ignore chest pain in yourself, see your doctor.

Think about a shower chair also, to make bathing safer and more comfortable during this time of treatments.

My thoughts and prayers are with y'all.

Good advice, and I second the suggestion of seeing your doctor, Rich. They can at least get a baseline EKG, and refer you for an echocardiogram, if necessary.

Also, the shower chair is a good idea too. When I had my second spinal fusion, my hubby bought one. Digging my heels in about getting old, and not needing geezer gear, I wouldn't use it, at first. He finally convinced me to just try it, and I found it a lot more comfortable than having to stand for long periods. I take forever in the shower because my hair is long, and rinsing it is a pain. If Connie feels at all dizzy or lightheaded, it's much better to be sitting, than to risk a fall.

Thinking of you both.

Originally Posted by Lucille

Don't ignore chest pain in yourself, see your doctor.

This. You can't help Connie if you don't take care of yourself.

My wife ended up having to tell friends and family not to text me when I was recovering from open heart surgery. They just did not realize how taxing that was to me. The thought of having to reply was physically exhausting. I sure hope her and your days get better soon.

Originally Posted by bcr229

This. You can't help Connie if you don't take care of yourself.

and !!