Month: March 2016

I just can’t catch a break. Thursday I was feeling like crap but decided to try to get to the center. I left at my normal time (an hour before) thankful that DiAnn would be at the center to do most of the heavy lifting. She called me at 5:50. . . .25 minutes before the start of class saying she wouldn’t be coming that she didn’t feel well. . . Too late to cancel, and feeling like crap, I held the class. Not my best, but I did what I could. . . hope it was enough.

Friday all hell broke loose. for some reason, my ear/throat began to cause me great pain. It felt like the sinus infections I used to get, but my sinuses didn’t hurt. Pain kept increasing, voice kept disappearing. I should have know it would only get worse. I made the decision that I would wait till my Dr. appt on Monday and not call on Friday. Still not sure if it was the right thing to do; but no fever, so I thought it was a safe bet.

Saturday, there were no L1 or L2 classes, but we did have puppy. Again, with my ear hurting as much as it was and my voice almost gone, I was thankful I had help in the center. Oh wait, she never showed. No notice that she wasn’t coming, just didn’t come. Boy did I punt through puppy class, but again made it through. Limped home; must have driven about 20 mph all the way home. The pain was very distracting. Shouldn’t have been out in the first place.

Thank heaven the dogs were good when I got home. I went onto the couch and didn’t come off all weekend. Pain was excruciating; couldn’t eat; couldn’t drink; and Percocet didn’t put a dent in the pain. I did work under the assumption it was congestion causing all this, so I took Sudafed D and used a steaming mask to try to break things up. Nothing seemed to help.

By Sunday night, I was feeling a little bit better and tried to eat some solid food. Soft pasta noodles I thought would be a good bet. . . WRONG!!! The pain went through the roof worse than ever. Went to bed at 8pm in tears.

I guess what made it worse what that it was a holiday weekend and I never heard from the kids. . . not for the holiday or to see how I was feeling. I hadn’t heard from either of them in over a week. I heard from Mom, Aunt Anne (Susan and Annmarie were at her house), Louis, and Uncle Tony. Like I said before, I keep being shown time and time again, that the only person I can depend on to really get through this is me. Sucks, but that’s how it is. Now all I have to do is be strong enough to do it.

I should have known that since I and an appt today, the pain would be much better . . . .and it was. I think the vaporizer treatments helped a lot. Today is was only annoying. Dr. couldn’t see anything but told me to keep an eye on it.

He was not happy with how my chemo was going. Apparently my numbers (especially white blood count) were too all over the place. The meds that were supposed to stabilize the white count were looking as if they were completely ineffective. He needed to change my regimen so that I could have follow-up treatment the next day after chemo and again one week after. Hopefully that will keep my numbers a little more even. We’ll see. I start next Monday with the new Chemo regimen.

I give up trying to think I’m going to have good days during chemo. It just doesn’t look like it’s going to happen. The best I’m going to hope for is not awful.

I was feeling better today and decided I needed to empty the clean dishes from the dishwasher and load it up again from all the crap in the sink. Then I thought maybe I’d sweep the house (and remove the several dogs’ worth of hair on the floors). I got finished with the dishes and was completely wiped. . . couldn’t get to the floors. We’ll try for that tomorrow. (Keep your fingers crossed. . .I hate living in this pit).

That’s about it for now. I was able to start to crochet again (it’s been almost 2 weeks since I was able to do that). I am determined to finish this handbag by tomorrow. Hopefully I can report that successful too.

As Tigger would say TTFN

Another very, very long week. I was incapacitated again until Tuesday. I’m thinking that is going to be the pattern. . . .and a lousy pattern it is too. So sick I have to drag myself, step by step through the day. No rest for there are responsibilities to keep up with. Dogs to take care of, garbage to tend to, meals to try to prepare, mega tons of dust and dirt to try to minimize in the house (although I admit that is the last on my list). Every step a conscious effort to stay upright and not topple over from the dizzy headache that permeates every moment. Oh to give that all to someone so I don’t have to deal with it.

What’s worse, is that my house is such a disgusting pit that I am embarrassed to even have anyone come over to help or drop things off that I might need. I am forced to live in ways that are not acceptable to me and I am too damn proud to let others see. What a jackass. Just as my weight, it says something about the person to others, whether a truth or not, the statement is made. Deal with it, Joann.

After Tuesday, things lightened up a bit. Somehow, though now I have this excruciating earache. At least I think it’s an earache. I can’t really determine if it’s deep in my inner ear or my glands in my neck. I actually took a Percocet tonight because I can’t even swallow without sending me though the roof. (I never realized how much a person swallows during the course of a day . . . or even an hour). If it’s not one thing, it’s a @#$@# other. Just my luck.

Went to training tonight. I had 2 classes scheduled. DiAnn couldn’t make it and let me know an hour before the classes. I’m glad I had already determined I was capable of going. Too late to cancel at that point, but I was not really capable of teaching both the classes, still nowhere near well enough. If I had the proverbial, cherished full-time job, I would still be calling in sick. . . . and it would be very legitimate. The Level 1 class was good. Low key but we did a lot of good work. I did a lot of it sitting down.

I was so pleasantly surprised. One of my clients (actually the client’s dog) gave me a “boo boo” present. . . a small cactus, and card (from the dog). It was so nice to be thought of like that. Then I got another gift from a Boy Scout that I was helping with a Dog Care badge. A wonderful card, small carry satchel, and a bunch of tulips. I was really touched. I think he was very sincere. We talked quite a bit about dogs tonight and he seemed VERY interested. This is the second Boy Scout I have done this for. Brennan was the first and he too was a joy to work with. What a great sense of humor he has. Kept me constantly laughing. I love doing things like this. This is why I want to focus Pack Leader on working with Kids and Dogs. I just have to find a way to make it happen.

I have the best clients in the world! I can’t tell you how lucky I am. I can’t imagine the same relationship being offered to other trainers. I have quite a few who think I’m worthwhile. Several even consider me akin to family. I’m very lucky.

Only Henry showed up for Level 2 (besides the 2 Level 1 students that showed up by mistake to the wrong level). So we were out of there by 8 pm. It’s a good thing too. I was at the end of my endurance. I was getting the chills, completely achy, and could barely move (and don’t forget my ear 🙁    ).  I got home and actually left the dogs in their kennels for about 15 minutes while I went to lie down. I never do that, it’s just not fair to them. When I let them out, though, they were wild. . .. playing, jumping, barking, tussling. They were having a ball and I was having a hard time just staying upright. I let them play like crazy till 10 pm and then put them to bed. That’s not before I was caught under several of their play sessions and have the scars to prove it. I hate to be grumpy when they are just doing what they are supposed to do, but it is very hard.

Into bed and passed out immediately and then, guess what. . . up at midnight because I can’t sleep because I’m in so much pain. Can’t get at all comfortable. Oh well. Another night of no sleep only to set me up to struggle during the day.  At least I don’t have to do anything tomorrow and can hopefully get to bed without feeling completely beaten down.

This weekend is Easter. Haven’t heard from the girls at all. Would be nice if there were people who cared enough to check in at least regularly to see how I was. There are a few. . .. Mom, Aunt Anne, and Sheri. That’s about it. Notice my kids are not on that list. Am I being obstinate to take offense when my oldest chastised me saying that “You know, Mom, you can call me to let me know how you’re doing, too. I don’t have to be the one to always call”? You know, I might be wrong, but yes, she does have to be the one to call to see how I’m doing. As a result, we don’t talk much. Jenn is better, but touching base once a week just doesn’t seem right either. If there is a thing as Karma, I would like to know how I earned this.

Ok, the Percocet is kicking in, thankfully it appears to be working somewhat and the pain is not as sharp. Going to try to get some sleep so I can not be a complete bitch tomorrow.

Have a good night all. Talk to you soon

–joann

As dictated Sunday night (3/20) about 8:30pm

It’s times like this when I wish I was living with someone who give a rip about me.

Oh it was a terrible day. It didn’t start out too badly, I just felt a little bit off. But as the day wore on it got worse and worse and worse. I went to training (at least I got to the training center) but all I could do is put my head down on the desk. Thank heaven Sam was there. He did a great job with training. By the time classes were over at 1 o’clock I knew I was going to be in bad shape.

When I got home the dogs were just so excited to see me (I can’t blame them) they were in their kennels from, well, all night which is a 12 hour night. I didn’t get up in time so they only had an hour to hour so to play before I put them back in kennels for another five hours stint. So they played and played and played and I just sat. After a while I laid on the couch and they rested with me for a while. Of course Loki wanted to play ball. He always wants to play ball and he’s really good at it too. He’s actually learning to give it back to me and not to Jasper. Why he gives the ball to Jasper who never gives it back is beyond me.

I actually dozed for a little bit in between phone calls of course. And more playtime. By 8 o’clock I had had it. At 8 o’clock I was so dizzy I could barely stand. So now I’m dizzy and nauseous and weak and wishing I could eat something as I know it’s the right thing for me but I can’t even see to go into the kitchen. Sometimes don’t you wish you could just have somebody to watch over you take care of you. I tell you, in the last many years of been in Minnesota it doesn’t happen often, but this is definitely one of them. I’m just hoping that if I get some sleep it will be better, at least a little bit, in the morning he is wishing to a good good night.

Every time I go for a Oncology visit of any kind, I have to fill out this stupid form to rate on a scale of 1 to 10 how I’m feeling. . ..pain, discomfort, anxiousness, depression, etc. It is the stupidest thing. Then the nurse who does the initial intake, takes all this data and enters it. There is never any feedback.

On every form I put my depression at between a 7 and a 9. Never a word about it. What good is the form if it doesn’t trigger a response. I am actually thinking about refusing to fill it in next time and see what they say.

Better the second time around.

Friday, March 18.

Sue was nice enough to drive me down since I had no idea if I would be any better with the changes that would be made to my regimen. All in all it was a better experience this time. Port was activated immediately with no issues. My blood work was “perfect”, and things ran along at a good clip.

Now don’t get excited that the blood work was perfect, there were several red numbers on my sheet, (dang it if I forget what they were. I will ask for the results next time), but they were all normal for someone at my particular stage of chemo with my particular drugs. Not a great comforting thought, but . . .

I was made much more comfortable this time. Blanket, snacks, a drink. and it went right according to clockwork. In by 8:45 out by noon. After it was over, I had a roaring headache, but no dizziness. My head was “cloudy” but I could focus to drive well. I was completely exhausted, though . . . which I wasn’t the first time. All in all a good trade-off.

The rest of the day was uneventful. Felt like crap and all I wanted to do was sleep. My headached worsened and I took some Tylenol. It helped some, but sleep was the best medicine. My dread now, is tomorrow. I must get to the training center tomorrow and Sunday.

I mentioned my hair started to fall out on Thursday. By Friday I could make several Yorkie’s a day with what fell out of my head. I was initially told it would be gradual. A little here, a little there, till eventually it was all done. What I found out during chemo was that the eventually would be 2 weeks at the most. I’ll be lucky if I make a week.

Saturday, March 19

Wow do I feel sick. Can barely keep my eyes opened I’m so tired. My body is achy and my headache just won’t quit. BUT . . . I will make it to the training center.

I dragged through training and sat down for most of it. I detest lazy training in both trainers and owners. I just had not to many choices. Sam was there and I was VERY grateful he was. He was a huge help and I think he’s going to do both Level 1s today alone.

Last night when I collected my 5th or 6th Yorkie from my head there were several very large bald spots. I looked like one of those ads for hair replacement. That was it. I cut it short (really short) and decided it was time to either wear a wig or a chemo cap. And so we have it. No hair for Joann for 8 months. UGH. My Mom always used to call my shining glory and I was always really proud of that head of hair. . .. thin but VERY abundant and now it’s gone. People say it will be back, but now the nursing staff is telling me it will likely be different. Different in texture, different in straightness, even possibly a different color (which I highly doubt). Time will tell, but right now I have the duty of picking what hair I will (or won’t) wear every morning. I dread that. I’m trying to talk about it like it’s fun, but I was always a wash and go kind of person and this is just not going to be fun.

A few things I noticed. . . where I have no hair, boy it’s cold. I can see I will need something until it gets MUCH warmer here. The second is wigs are hot and uncomfortable. I can see that around the house it will either be nothing or a cap.

Thankfully the dogs didn’t freak out with either no hair, the cap or the wigs. They took it all in stride and just knew it was Mom. Don’t you just love dogs!

I notice I don’t sleep much the first week of chemo. I know part of it is the steroid they put in the IV. I also pee a lot more. I have to wake up at least 3 times per night to go to the bathroom. I think the runs are about to start again. One and one half weeks of that, again, not fun. I also don’t have any appetite. I’m going to put that in the not good category. I’ll have to keep an eye on that. I lost 8 pounds my first chemo week. we’ll see where we go this week.

That’s it for now. (Boy these sure aren’t short and sweet like Doogie Howser’s were); but there you have it.

Talk to you soon

–joann

Well, my record holds true, only one day in a row feeling anything close to well. Today it was light headed and dizzy. I had 2 classes tonight and couldn’t wait to come home. I almost gave up on the Level 2 class, but was able to think through it and get everything back under control. I hope they thought they had a productive class. It’s really not the easiest to keep on top of the dog’s idiosyncrasies, abilities, and current attitudes and put it all together to come up with things to do that both challenge them and keeps them from tipping over. Good for me 🙂

Today I noticed I started to lose my hair. I wonder how long it will be till I will need to do something about it: wig, chemo cap, shave it off. I’m not looking forward to it. I don’t consider myself vain, but my entire life (from childhood), people have always commented on how wonderful my hair was. I agreed and moved on. I appreciated it but never thought a lot about it. Now I’m thinking of it. It’s going to be hard for me when it’s gone.

Tomorrow is my second chemo treatment. I can’t tell you how much I’m dreading it. I know I’m making it worse by stressing over it, but I can’t help it. I can’t be as sick as I was after the first one. If I could I’d just run and hide.  Yea, but no.

That’s about it for now. I’ll let you know how it works out tomorrow. The sooner I write, the better it went (or that’s the theory I’m going for right now).

–joann

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?