Sunday

I am still so sick. 

After an entire second week of misery, I reached a breaking point. The side effects of the antibiotics were/are destroying me. Yesterday I told J I couldn't take it anymore, and he called the HH RN. She ended up calling my doc to report my  desire to stop the meds.  Later still she called back to report she had the OK to stop all the meds. 

One of the other RNs was then supposed to come over and draw some labs, but by the time she got the message it was after 5, and she was an hour away. She called me instead, and basically decided she didn't need to draw the blood, and advised me to go to the ER if the side effects were too much.

J unhooked me from the pump, and I lay back down on the sofa, as I had been doing all day. He flushed out the PICC line, which we will need to do twice a day until it is removed.  I couldn't eat, could barely drink anything without it coming right back up. Feeling thirsty but nauseated at the same time.

It's Sunday morning and I slept during the night, but it wasn't restful at all. Bad dreams, disjointed images, just like it's been since starting the antibiotics. I feel like I am trying to empty my system of bad stuff. My stomach hurts, my skin is crawling,  my arm with the PICC line is uncomfortable. My head hurts. I can't focus.

It has been like this for what seems like forever. It's only been 2 weeks.  Too bad I didn't make this decision (to stop) two days ago, before the pharmacy's latest delivery, which was another $243. But at this point I almost don't even care about the money. I just can't live like this. Another 6 weeks is just impossible to contemplate; I'm not sure I'd live through it.

I went to chemo on Tuesday, and reported the rash/itching/reaction, again. This time DrA came and examined me,  but said it ultimately looked like a reaction to the 4 antibiotics and not the chemo; he suggested I see a dermatologist.  He offered to have me skip a week of chemo to see if that would improve but I decided to proceed with it. That prednisone infusion gave me about a day's worth of relief from the itching at least.

Wednesday was a better day: I felt well enough to accompany J on a few errands. I donated some cancer stuff to the Radiation dept, and we returned another package to Amazon. That was it, I was wiped out. 

The rest of the week just ... the hours ticked by. Not able to do anything for feeling so ill; I watched TV, napped, tried not to throw up.  J is working again/still on the back room, putting up shelves. I can't summon the energy to be enthusiastic, but I really am happy he is feeling up to this job himself. 

He really was a cheerleader when I was doing the four meds, encouraging me, but now that I'm off them, he's angry that the doc wanted me to be on them in the first place.  I have an appt with her Thursday, and also an appt with  my derm, for my annual exam. If the rash is still there, maybe she'll have some meds which will help. 

Friday I see my pulmonologist,  and we'll get caught up; I haven't seen him since starting the PICC line/meds etc.  

Okay, gotta stop. 

TYG 

Sunday

 A whole week. Utterly exhausting. 

May be a bit depressed. Yes, I think I am. Depressed, angry, frustrated, tearful.

Warning--this is all about my side effects. May be TMI.  I can tell I've gone downhill, and I'm guessing this is the "cumulative" effects the doc mentioned. 

Since starting the PICC line med administration, I have no energy, I'm feeling weak. I don't even get dressed most days. I cannot do my stretching exercises  because of the damn PICC line in my arm. I don't want food or to do any cooking at all, both because of the ever-present nausea and the feeling of something stuck in my throat. Plus, the cracks in the corner of my mouth are very painful: every time I take even a small bite the cracks re-open.  I have a headache most of every day. The diarrhea/loose bowels are every morning, making it difficult to sit down; the itching on my arms and legs --OMG-- is just almost unbearable; no matter whether I put lotion or aloe or hydrocortisone it comes back and suddenly I am scratching til it bleeds. 

Because of the PICC line I have to move slowly. I'm carrying a little pump bag everywhere I go. It makes a low hissing sound every 10 seconds to remind me it's working. Or, if I bend my arm too far, too long, it makes an alarm sound, and suddenly I'm reminded to unbend. This makes my attempts at embroidery or cross stitch difficult. I'll be damned if I want to sit here all day watching TV, but basically that's what it's come down to. 

On top of that is the care of the PICC line itself. Every morning as I carefully get out of bed without tangling myself in the tubing, I have to decide whether I need a shower. If so, J has to wrap my arm in SaranWrap so it doesn't get wet. Then I carefully step in the shower, and one-handed I scrub my body and head. Meanwhile J is standing there making sure the arm doesn't get wet, and when I'm done I pull back the curtain and there he is ready with a towel. It's a slow process drying off, and then he helps me get dressed. Anything with sleeves has to be maneuvered carefully so the pump bag goes through that. 

Once everything is in place I take all five of my meds,  and then we head to the kitchen to change the first bag of medicine. It has to be kept refrigerated, naturally, taking up valuable space. The complexity of changing the tubing, flushing the line, making sure all the air bubbles are out, that the needle is taped in place, that it's not rubbing against my skin; this is why I absolutely hate doing this. This is why I never wanted to work in a surgery center. It's terrifying.

J and I are finally getting the routine down and are working as a team, but for the first week we had to have an RN here every damn morning because something went wrong. Which means we call the "emergency line" at the HomeHealth, explain the situation, and then wait for a call back on what to do, or who is coming over when to do what. Meanwhile I'm sitting here with a needle in my arm but not getting meds.

On Wednesday we couldn't get the IV to work at all; nothing was dripping in. An RN came over by 2:45pm (we had called at 10am), and verified it wasn't clotted, but it wasn't working correctly. That was the day Sis and Dad stopped by to bring the Honda back. They got a good look at what a screwed-up IV looks like. It looked like I'd been in an accident.

Anyway, the RN reported this to the HH agency and he also called my ID doc. She then sent orders to the other hospital, Advent; they called me around 3:15, and I was there by 4pm. This time it went perfectly. The whole thing was less than an hour. Yes, she had to remove it, bandage it, and re-insert in a different place. Owwwww.

Since then the nurse has only been there once. So far so good. She will be here tomorrow too, to change the dressing. 

On Tuesday I had my chemo #6, so I'm halfway through. I saw the NP there before heading in for my session. I had just finished the steroids and the itching was less, but it is back now. I don't know what it's from, and neither does she. Am I allergic to one of the chemo drugs or to one of the antibiotics??  

Thursday Bro and SIL had gotten back to town from VT, and were adjusting to being back home. Still they were generous and thoughtful enough to ask us to order something yummy from Panera, which they would then have delivered here.  Which we did, and thoroughly enjoyed it. I am so lucky to have such supportive family. I couldn't ask for anything better. 

Friday J made us a shepard's pie for St Patrick's Day dinner. He never ever puts seasoning of any kind in food which he is cooking, which means it's all edible but not very...flavorful.  Still, he was so tired and stressed that everything he does is very much appreciated. 

I was hoping to attend my meeting, but Saturday I woke up and sadly knew I couldn't make it. I was feeling awful,  and tired, and nauseated. I emailed my good friend and let him know. I also sent him a copy of the literature order N and I had worked on, and he will find someone to help with that. I'll probably have to give up my position as Secretary, as I cannot be sure I will be well enough to attend.

That part kills me. I remember my two other friends in AlAnon who got cancer and both died shortly after diagnosis, after being unable to attend any more meetings.  I know my own diagnosis is quite different, but I worry since I have the lung infection  along with the big C ... 

Instead, Saturday afternoon we watched a couple of movies and then got on the laptop to watch the Zoom meeting of Zeke's memorial service. Unfortunately it was a poor connection: we could hear only bits and pieces. But J got to see his daughter and Amelia, and Z's wife Anna, who were the presenters of the various speakers and sharings.  It was hard to sit there and listen to the service, which was garbled in many areas. But after the family had shared their memories, and Z's friends started sharing, J said to me, "Let's leave...we don't need to stay for all of it."

Well, that was the week. I am so frustrated that my Life has come down to being inside all the time, and managing side effects, and taking meds at the proper times. It is no life. Still, it's what I have now.

I do not know if I can make the full seven more weeks. I don't see my ID doc until the 30th and I see the pulmonologist on the 31st.  I also have an appt Friday to see the dermatologist,  my annual exam. 

Feeling pretty low, but still thanking my HP for...everything.

 

Sunday

 Well, lots changed this week. The home health nurse Gretchen was here again this morning, for Day 2 of instruction /med administration/ review of everything J and I have to do. She or another RN will be here in the morning, and Tuesday also. 

Turns out there was a hell of a mess-up last week. Thursday I saw my ID doc again, and we discussed all my questions; the CT I had the day before showed typical mycobacterium abscessus, what I had before. Its growth is waxing and waning, and while it is slow-growing, she wanted me to start the four heavy-duty antibiotics all on the same day. She apparently put the order in but it was not complete. So I got the call later that day from the hospital's Interventional Radiology Dept to come the next day, Friday, at 1 to have a PICC line inserted.  I was given no other info. I had no idea what to expect, how long it would take, what was involved.

Friday at one we arrived, and 3 hours later we were leaving. Turns out the PA who did the insertion procedure didn't have much experience, and messed up. Normally lidocaine is given once in the area above the bend in the elbow (in my case the right elbow) and while I was lying flat with my arm stretched out, two techs were coaching her in whispers. She was having trouble with "the wire", and ended up stabbing me twice more to numb the area enough, to get the vein/wire installed correctly... I was intensely nervous and uncomfortable, to say the least.

Back in my "room" later, I was trying to get dressed when I noticed blood dripping off my arm, off the end of the tubing under the dressing. An hour later a  different tech had cleaned it all off, changed the dressing,  and was discreetly horrified at the amount of bruising and damage to my arm. Bonnie was very, very experienced and gentle, polite but carefully not looking at the PA (who of course had been notified of the bleeding and come to look at it, while not taking any responsibility). 

Later still, my nurse Joanne was very apologetic, gently reassuring me, telling me to let it relax and calm down, be careful when bending my arm (because the dressing is right over the crease in my arm and very uncomfortable...).  She told me if it was too painful during the next several hours/weekend, that I could call and speak to her, and that I might need to come in and have it re-done. Arghhh. Did the PA apologize? No. I never saw her again.

Long story short it was a very uncomfortable night; something started bleeding again under the dressing,  I was stressed and crying, J was so angry and helpless to do anything except help me with getting dressed and undressed, bringing me my dinner, catering to me in every possible way. I took an anti-anxiety pill to help me sleep. I slept carefully, waking frequently.

Saturday I got a call very early from the HH nurse asking if she could come by at 9:30. (I'd been told by the agency that the nurse would be by at 1pm, because that would be 24 hours after the PICC line insertion, and supposedly 24 hours after the first dose of meds, which I'd been told would be given to me in the hospital). But those meds were never given, because they never received any orders. 

Unfortunately I had already started the oral antibiotics (again, because I'd been told to start them all on the same day), and no one knew whether I should continue them or not. Joanne said yes, continue. The MA at the ID doctor's office said no, start them Saturday when the HomeHealth nurse is there. I was so confused, but I went with Joanne's suggestion because she was a nurse, and had more experience with the PICC line.

In any case, the Home Health nurse had not been given a time to come here,  and because of the large area she was responsible for in this county, this was the only time that would work...so I agreed. I had to miss my AlAnon meeting, which I was very upset about. One more damn thing to be stressed about.

However, she arrived, and spent 90 minutes here, teaching me and J about all the administration. Turns out the PICC line works just fine, although it is not a pretty sight. She was horrified at the botched job, and the lack of communications, and the overall messed-up situation. She kept apologizing, even though it wasn't her fault: I'm so sorry this has happened to you, it's certainly not normal, you were treated very poorly, etc. I liked her, and her sympathetic attitude.  She was so horrified that she asked if she could be the one to come today also, for continuity. We were happy to agree. I liked her a lot. More, I trusted her.

So. The meds are given via a pump which hooks up to the PICC line. I carry this little pump with me wherever I go.  I get one med which drips in for 30 minutes, and then we switch meds and the other bag drips in over a 24-hour period... 24/7 for the next 56 days hopefully.  If my body tolerates it, which is what the doctor said.  She said a lot of people have too many side effects to get through the whole treatment period. Gulp.

And on Tuesdays I get chemo, infused through the port. I do not know how this is going to work. I'm scared that we, J and I, are responsible for the infusion/administration of the meds. I thank GOD for my medical background, because I am somewhat familiar with this. Even so, it is scary as hell. Especially for J.

Wednesday we bought a new printer, and I will give MissS the old one. I just couldn't stand the endless "offline" messages, and was unable to effectively fix that error. So far the new printer, a Canon, is doing much better. 

Wednesday I also had a CT scan of my chest, which I last had in April of '22. The ID doc told me it was a typical mycobacterium abscessus infection, which means it waxes and wanes in growth. Still, she didn't want me to wait until after chemo is done in 7 weeks, due to the similar antibiotics not clearing this up the last time.  She said she wants to see me in 3 more weeks. 

I do not like this at all. I hate this, as a matter of fact. I really, really hate it. It's so overwhelming, dealing with cancer and a lung infection. I feel so emotional, so tired, and so stressed this week. 

I am trying to take care of myself--the stretching, skin care, the steroids for the rash, being gentle with myself, playing with the cats, trying not to stress over the absolute disaster of the house.

However, sweet and thoughtful good things happened this week too: Care packages arrived from friends (Kathy, Alyssa and Gabby, Jennifer) with little goodies, teas, skin care lotions, fuzzy socks, eyelashes for when/if mine fall out, make-up, chocolates, beanies, scarves....  

Rob texts and sends little videos every day, of his day, and where he is staying. It's good to hear his voice.

Sis sent us dinner one night from BJ's. We chose good healthy salads, which were yummy.  Neither of us feels like cooking these days, so our meals tend to be pretty simple. Not having to cook at all was Heaven!

Dad loaned us a thousand dollars so we could afford the IV meds. I have a $3500 deductible, and have met only $1100 so far, although with the recent scans and PICC line and IV supplies, who knows what it is now.  We'll take the rest from savings. 

However we might not get through the whole 8 weeks. The pharmacist advised paying weekly (instead of the whole amount all at once) for the meds and supplies, which are delivered each Friday. That way I can monitor my progress, and not pay ahead of time for meds I end up not using. 

Lord... I am tired. Guess this will be my new normal.

Still, TYG

Sunday

So much happened this week.

Monday morning I woke up seeing hair all over my pillow, the sheets, my pj's...I couldn't stand it. Fortunately Sis and MissS were able to come over at 11, and they were a great support while J shaved my head. It's pretty much a buzz cut, extremely short. 

I'd read on my support group that some people, when their hair was shaved so short, didn't lose any more-- in other words they wouldn't actually be bald. But it's been almost a week, and it looks pretty thin now; I think I will be losing it all. Sigh.

The first glimpse of it actually shaved was a shock. But it's actually not terrible; I've adjusted to it.  I'd been worried I wouldn't have the "right-shaped" head, which is ridiculous of course, now that I see it. Everyone's head is the right shape, for them. And it's fine. I only see it when I pass a mirror. J looks at me all the time, and doesn't seem horrified. When I'm out in public I do wear the scarf, or the beanie. I don't have a wig yet (and oddly I haven't heard from the wig-maker in over a week). But in any case it just might be too hot to wear here in FL.

So that was Monday. I was so grateful for Sis and MissS being there. Later in the day, MissS arranged for some lotion for my skin to be delivered, and for some flower seeds to be delivered for J. What a sweet thing!

I also called the ID docs, and got an appt for March 15th for one of them; when the other one called back and suggested this week, Thursday, I was thrilled. I suspect my PCP had something to do with that speed... I then called the other one in NSB and cancelled.

Tuesday was interesting. I was told I was going to see the NP there first so we needed to be there by 8:30. We waited for almost a full hour before she came in. She asked a lot of questions about side effects, and how things were going. She discussed it with the doc and finally sent in an rx for the rash. (It's been almost a week now and it isn't really helping. She calls it a "chemo rash".)

Then I had the 4th treatment. I'm a third of the way through now, 8 more weeks.  I've lost 3 lbs, which is fine with me. I'm not hungry at all. 

On his way home J texted, and told me the car was making noises, so he dropped it off at our mechanic's place. Then he arranged for Sis to pick me up, and we were then just waiting to  hear what the problem was with the car.  Thursday morning early they called, it was ready, some sort of spark plug issue. $225. 

That morning was my appt with the new ID doc; Dr C. She is from Russia, and I'd been warned about her thick accent, but honestly I didn't notice that at all. I did notice how young she seemed!    She was missing one lab result which hadn't been sent over from Dr Z, so I was asked to produce a sputum sample in the next few days, and then come back in 3 weeks.

The next morning, Friday, the office called: skip the sputum sample, the test result they were looking for had already been done by DrZ, and instead they wanted me to know that 2 IV meds  prescriptions were being sent to a specialty pharmacy and 2 were being sent to my usual pharmacy. The specialty pharmacist would be explaining how to take those IV meds. I said ok.

Much later in the day, around 4pm, that pharmacy called. Much to my shock, and I may have some of these numbers wrong, the meds will cost almost $1900 for the two-month supply, which I have to do every day by IV, either myself inserting them in my port, or in an infusion center. This cost doesn't include the other two meds, or the cost of doing the infusions in a center (which my company has).

I wrote down what I thought I'd heard, and then said I'd have to call them back because it was a staggering amount of money and I needed to figure out how to pay for this. Then I called the doc's office and reported what I'd been told, expressed my utter shock and horror, and asked if they knew of where there was some financial assistance available. They were also in shock for me, and had been discussing this when I called. So my new ID doc is going to send a message to the pharmacist and try to figure out some way to help me; they will get back to me tomorrow or Tuesday.  

I don't expect any help honestly;  a prescription sent to a specialty pharmacy is automatically going to be high cost. Since I haven't met my deductible, these costs are on me. The kicker is how to pay for it. 

So we have options. Take money out of the IRA, get a HELOC (but we'd have to pay that back),  take it out of savings (which will wipe out all our savings, honestly), or possibly sell the Honda. Selling the Honda I think is more likely, but it will take a few weeks to get it ready. I don't think there is any medical urgency as far as starting treatment, but naturally DrC would like me to start it as soon as possible. My infection is slow-growing, and this treatment certainly does not come with a guarantee of a cure. 

But I have another appt with her Thursday, and we'll discuss the options. What are some other treatment options, how good a chance does this one give me, what are the side effects, how will it work with being on chemo at the same time, etc. 

That piece of news really threw me off center. I was depressed, and discouraged, and frustrated, and scared. J kept trying to cheer me up, but his efforts are not helpful sometimes: "Chin up! it will all work out, don't worry. Now, what would you like for dinner?" 

I wanted him to just leave me alone so I could think about it, but he wanted to distract me. 

Later, my mouse stopped working again. This time I knew what to do (make sure the Bluetooth was on), but I could find no setting for the Bluetooth. I sent a text to MissS, and then called her. No response.

Some time after that she did call, sobbing. She and Kit had a kerfuffle. I won't go into details, but J and I ended up going over there, and while I talked with MissS, he talked with Kit. Kit had been drinking; this was MissS' first experience with alcoholic drinking in a partner, whom she loves.

We stayed there about 45 minutes, talking to both. The upshot was this wouldn't get solved that night, so we just made sure each felt safe; the next day Kit left for a week to give them time and space to think. I strongly suggested 12-step programs for each, but of course that's up to them. There's just more hell and grief visible down the road if he doesn't stop drinking. Which he appears to be aware of.

Poor MissS. She couldn't have picked someone more like her brothers if she'd gone out looking for him: all three are working in restaurants, diagnosed with ADHD and depression, currently drinking, not in recovery and not motivated to do so, but charismatic, very charming young men. The gift of gab, I think they call it.

The Friday morning Sis had ended up coming over to help with the laptop/mouse issue, and was able to fix it. Yay!! This morning, Sunday,  I discovered the damn printer is offline again. I do not understand why this keeps happening. That will take some time to work on, later today.

Saturday we went to my meeting, and while intense, these meetings are my lifeline. My voice was very hoarse, almost couldn't speak, so I didn't share, except privately to my two closest friends about the medication issue. They are very supportive.

This coming week I have chemo #5, and the appt with DrC. A quiet week. Bro and SIL will be heading back south next weekend, bringing Dad's car. By that time we'll have more info on the financing of my meds.

J is outside working on the pool, and in between times he is working on fixing the back room. Because, wonder of wonders, the plumbing issue was fixed. No more laundry draining back into the kitchen sink. I almost can't believe it! ... after all this time.  

I was going to work outside more this week, but since I've been told to stay out of the sun (due to the chemo) I am trying to follow that advice. When it's later in the day and shadowy, then I can work outside, in the back yard. It's better than not being able to at all.

And some days although I plan to work outside, I just don't have the energy. Two days this week I couldn't even manage to do my stretching. This concerns me, because I have 8 more weeks to go. Am I just going to get more and more fatigued?   I have twice this week taken naps during the day, and still felt too tired to do anything else. This is definitely a strange journey.  Some days I just find a movie on Prime or Starz, and it's all I can do to stay awake. 

  Here's my sweet Sammy, sleeping on me, as I am napping too. 

The other one, Finian, is almost always close by, but he's much more shy. He's coming around, and is loving and affectionate with me, but not quite yet comfortable with J. I am so happy with them. This one though, he is special. 

TYG