Category: Uncategorized

This post should have been written on Friday or Saturday at the latest. Apparently, though, I am only allowed one day at a time to feel well, and yesterday was it. . . .we’ll see what today brings.

I went for a port draw and my tox check on Friday. Everything was good with that draw, She hit it immediately and I barely felt anything. The results were ok, BUT . . . .my white count was at a critical low. I was completely unprotected from any ill-willing virus or bacteria I would encounter. As for training, they said be careful, but go ahead and pursue your normal activities. Everything else was fine.

I did get my chest CT back and instead of 1 node in the lung, they now found 2. If I keep waiting, I’m sure they will multiply. I got the report and went on my way.

The next day I was excited to get back to training…except. . . .I spent all night. . .well not all night, every 45 minutes, in the bathroom. I was miserable. On top of Diarrhea, I was cramping and my stomach was very distended. When I woke up and began any activity, not only did this not subside, but my back began to hurt and I felt very much like my pancreas was angry with me. Called the on-call doc and guess what? 9am off to the ER.  (UGH)

It wasn’t too busy at the ER and I was taken back to a room within 15 minutes. That’s where everything fell apart. Tried to get blood from my arm. . . completely blew it 3 times (in painful places). Said they’d have to access my port, but he’d need a nurse to do that. . . .what was he? OMG.

I was then led to an intake room. . . for over an hour I sat seeing no one. I was then taken to an exam room. Why is it the hospital is always so bloomin cold. I was FREEZING the whole time. (and I don’t do cold well). Again I say. All told, I was in the ER for over 6 hours. UGH.

The doctor was good and my main nurse was pleasant enough. It also gave me time to crochet 3 cowls in between all the goings on. My main nurse came in to do a port draw. She donned all the appropriate very sterile gear and prepared the environment (this has to be a very sterile procedure because of the immediate access to my jugular) and was unsuccessful. (whoever said that having a port meant that it would be one and done from now on lied. The caveat would me that someone used to them would have an easy time, once the swelling from the surgery went down. That’s lots of ifs and whens). Anyway, after twice, she was skeptical to do it again, so they called in someone who had more experience. (you could tell this was not something that was comfortable to these nurses). The “experienced” nurse came in and I swear she had an IQ of a flea. She started feeling around at the site and said she would be right back and would attach the port. As she was leaving, though, she asked the main nurse “Why are we in sterile gloves, gowns, and masks”. I wanted to jump out of the bed and leave at that minute. The nurse explained that this was the procedure and protocol due to possibility of infection and the comment was “oh, ok”. GET ME OUT OF HERE. That really freaked me out. I almost asked for a different nurse to do the draw. I don’t know why I didn’t.

When she came back in she brought an assistant. She explained that she couldn’t do this on her own, the sterility procedure was too much for her two hands to handle. She accessed the port. . . sort of. It should have been an indicator that she wasn’t in right when she could only draw 1cc of blood from my jugular. . .. I think I have more than that in me. But it was enough for the test so I let it go.

The procedure when a port has to sit is to either hook it up to saline or to flush it is heparin to keep it from clotting. She walked out the door and I didn’t see anyone to manage the port for over 10 minutes. When they did come in, they hooked me up to saline. A minute after they walked out the door, the pump started beeping. I waited about 2 minutes and when no one came in, I pushed the call button. No one showed up for 20 minutes. When the nurse came back. . .OOPS “I forgot to open the clamp”. Terrific, now my port has been idle and clogging for over 25 minutes. UGH again.

All in all, all tests came back fine so by process of elimination, they diagnosed an intestinal virus and sent me home. I was never so happy to leave a place in my life.

Sunday was a day of promise, I was up and ready for training, but I overslept due to the change in daylight savings time. (that’s a rant for a whole ‘nuther time). I decided I would go in late for the level 2 and call that good.

I got to the center halfway through the first level 1 class and they had questions for me. I was glad to be there. The day went well and Fergie was amazing, but I was tired and worn out at the end.

By the end of the afternoon, I could feel like I was running a fever. 99, 99.5, 99.8, 100, 100.1. . .. at those temps, I was dying. I couldn’t wait to get into bed. I was convinced that I had caught something at the hospital (with my white count so low), and I was now in trouble. Uncle Tony called and woke me at 9 pm, then Annmarie called again at 9:30. . . I didn’t answer that call as I couldn’t move at that point. I was miserable. Checking the fever through the night, it finally broke about 4 am on Monday and I was able to get some sleep.

And the saga continues. Stay tuned for the next exciting chapter. I have Chemo on Friday again. I can’t wait to see what the weekend brings.

–joann

Today was going to be a day that was better than the previous. That turned out to not be the case. Although better than the first weekend, I felt like I had the flu all day; achy, stomach not right, headache, etc. Oh well, I know it could be MUCH worse. I laid low and struggled through my crochet project that I can’t wait to finish and never do again 🙂

I got several calls today. Yesterday I spoke about those friends who run in the other direction (or are absent) when you need help. Today I ran into those who know better than you what you’re going through even though this is the first time they have encountered such an illness. Mind you, I have no problem with people offering advice in a well meaning way. What upsets me is when people pontificate on things that they have researched and decided is the right thing FOR YOU TO DO. Sometimes those soap boxes get very high.

When someone starts those rants, I just turn off and tune out. I guess, even well-intentioned, they don’t realize that even if their counsel was the best in the world, the intended will likely reject it because of the forceful manner in which it is presented. It’s at times like that that I just want to tell people to leave me alone and if what I’m doing kills me, so be it.

I guess I don’t want people to tell me what to do. LISTEN, offer advice if you have it, but just be there to hear me. I might complain, I might moan, I might be depressed, or I might surprise you and just be me. . . but thank you for just listening.

–joann

The week is starting to get a little better. I am not as dizzy and can open my eyes and feel somewhat normal again. I can work on a computer and crochet and have a little ambition, although not a lot.

There is very little nausea although the constipation I was expecting turned out to be just the opposite. If it continues, I will have to notify the doctors of that as well.

Sleep is fleeting. I am up to go to the bathroom at least 4 times during the night which is unusual. When I do sleep, it feels forced like I am clamping my eyelids closed for rest.

I have no interest in eating which is ok except that I really need to eat and I really have nothing in the house. I have food, but my desire and stamina needed to cook are non-existent. I’ll have to get Cobourn’s to deliver things that I can prepare quickly. I am told that I should graze more than eat, which is fine with me, I just have to find what to graze on.

I’ve noticed several, what I call, significant changes since I have gotten my first infusion. My body temperature, which typically would run between 68.4 and 74 degrees is now consistently higher at around 98.8. So afraid of infection with my white count very possibly depleted (even with the medication to boost it), I check my temp throughout the day. . . talk about neurotic. I am going for my “tox screen” on Friday. At that time they will let me know how my white count is holding up. Until then, I think it wise to lay low and stay as protected as possible. Dr. Laudi said that the chance of infection is less from others and more from myself, but the flu is rampant and there are kids and lots of people in class, so I’ll play it safe. . . WIMP! (and that annoys me too).

The other big change is I’m losing weight at a staggering rate. All toll, I’ve lost over 20 pounds since January. (Granted that included the 8 pounds for the mastectomy, but still). Even from yesterday, I’m down 2 pounds. I don’t know if it’s from the chemo itself of my new eating (or non-eating) habits. Time will tell. Losing weight is not un-welcome (purposeful use of the double-negative), but I need to make sure it’s not going to make me ill, either.

My depression has abated for the moment, I have been way too busy trying to stay conscious through the dizziness and headaches and trying to manage the symptoms to be depressed. I am still very not motivated to do much, though. I am frustrated with people who claim to be my friends (and good friends at that) that don’t check in from one end of the week to the other. When they do, they offer small platitudes and are off the phone in 2 minutes. I don’t know if they just can’t deal with what I’m going through or are too busy to be able to spare the time. In either case, I don’t care. I know I would be there for them.

When I was so sick after chemo and here alone, I called out for help. I always used to say that there is no one I could count on in an emergency. I was proven right. Of the 4 people I called, no one could help me. All have very reasonable excuses so I couldn’t be upset, but the bottom line is. . . I was alone. (Jenn did come up and help right away when I called. . . THANK YOU, JENN).

So the bottom line is, you have to learn how to be able to tend for yourself, no one else will do it for you. Maybe I should look into one of those emergency services for just such times. I could have called 911, but that’s not what I needed right then. I needed someone to help me so I could go to bed and feel better. Oh well. That episode has passed. On to the next exciting adventure.

We’ll see how today goes and write more later.

ttfn

-joann

 

It has been a long road to get to this point. . .2 surgeries, and test upon test upon test, but the end of the fight has begun. I am looking forward to 6 months of chemo and then another 1.5 months of radiation. God only knows what all of that will do to me. I am frightened of both the process and the outcomes.

Walking into my first chemo session was a shock. It was not what I expected at all. A large sterile hospital room with 35 recliner chairs with people hooked up to their IVs receiving treatments. No privacy, no appearances of comfort, just “get it done”.

The staff was caring and concerned and they placed me up near the front so they could keep an eye on me for the first session. I had a port put in earlier in the week and was dreading using it as it was still VERY sore and swollen. But use it they did. Unfortunately, just as holds true with getting an IV needle into me, it took 4 tries to get the port to connect. Four tries of pushing, poking, and shoving needles in my chest. By the end, I was very bloody, but the port was attached and we were off and going.

The chemo itself was uneventful. No pain, no side effects, nothing. Pretty easy. Then I left.

On the way out, I was a little unsteady on my feet but didn’t think much about it. By the time I got home to my driveway (about 1/2 hour away), I was so dizzy, I could barely see. It continued to get worse. I called the doctor and he was concerned about fever, etc, but said that my reaction was “VERY UNUSUAL”. Gee thanks. I was incapacitated all weekend unable to open my eyes. Lot of fun with 4 dogs to deal with, but I managed and the dogs were sooooo good. Thankfully, Sunday was very warm and I could leave the deck door opened for them to come and go unfettered.

Today is Monday. . .3 days after chemo. I’m feeling a little nauseated but no big deal. My head is still very fuzzy, but I’m managing so far.  I have no delusions that it will stay that way. The Drs. office called and once again said how unusual. . .no change in meds yet.

One day at a time, right?