No Rest

Just when I thought the week was over I was so wrong.  Yesterday Auntie had to go in for a blood transfusion.  The procedure took about 3 hours but with check in and check out they were there about 5 hours.  One of my sisters took her even when I offered saying it was her turn.   It's nice to know she's looking out for me but her week was just as crazy and tiring.   I decided to head over to see how my brother was doing since everyone was out of the house and he still lives at home.  My plan was to find out if he got off his duff and found a new doctor and to make sure he was going for regular visits since his hospital stay awhile back.  When I got over to mom's all but one of my siblings were there, even the one that lives out-of-town.  After talking a bit I asked why auntie was left alone and if mom was going back to check on her?  I got a "no, she was tired, she went right to sleep, even though I was concerned I left it like the told me to, bad idea.  This morning, mom went over to check on auntie, sometime during the night she got up and fell, she couldn't get up and spent the entire night on the floor.  Mom couldn't get ahold of the sister that lives the closest because she doesn't pick up the damn phone, so she called home and got my brother.  My brother drove down the street and got my sister out of bed, then the both of them proceeded to auntie's.  That was followed with calls to my other two sisters and me.  When I got over there my aunt was sleeping and they were starting to clean up her apartment, which reeked because of her situation.  She had no more options, we cleaned up her apartment and moved her in with mom today.  Even when we left mom with her at her apartment and went to mom's to set up, mom tried to fight it but I wouldn't give in. 

One sister left with her daughter and son, my brother-in-law and nephew went back to unload stuff from mom's into their shed and my two sisters, me and my niece stayed to move her in.  After a break for dinner we started the whole bathing process and then getting her into bed.  All I can say is, if this every happens to me, I want to be put in a nursing home.

Today was supposed to for the things I couldn't get done during the week.  I didn't get a chance to hit the grocery store leaving me with no caffeine, not a pretty sight and since I hopped into the shower as soon as I got home, I just started laundry.  Oh and my dog hates me, my poor baby.

T GGGGGGGGGGGG I F!

This has been a hell of a week.  The lady that works the evening shift had a death in the family so I worked the late shift on Monday and Wednesday.  That meant working until 9:00 pm on Monday and 8:30 pm on Wednesday.  

On Monday she had the initial consultation with her surgeon who basically told her what we already knew, that she was going to need a Colostomy.  But this surgeon didn't look at anyone during the entire visit.  He apparently was looking at something else while talking to them and this left my aunt, mother and sister very uncomfortable.  My sister said he had no personality and even my comeback of "what do you expect from someone that works with assholes all day" couldn't lighten her mood toward him.

Tuesday was my turn for the doctor at 7:20 am and then off to radiation at 10:30 for auntie.  I felt so cooped up that I had to get out Tuesday evening so I hit up a friend, did dinner and walked around Fry's for a bit.

Wednesday was hell at work, not only did I have to work late but I had to actually get indignant with the son of a patient.  I'm not sure if it happens everywhere else but you're hard pressed to find a doctor here that sees you at the time of your appointment, and when you have a great doctor, you always have to wait.  This guy had been calling for weeks trying to get the doctor to do something that would likely result in the death of his mother, all because he wasn't willing to listen to her or the doctor.  We finally fit her in and because the doctor was behind he didn't want to wait.  All the crap he gave us and he wasn't willing to let his mother even see the doctor.  He was copping a major attitude with me and so finally I copped one right back telling him that all the other patients are willing to wait and him yelling at me wasn't going to get her put in front of anyone else, he made another appointment and left. Over an hour later when I led a patient into the exam room I was comforted by he and his mother pulling me aside and telling me that that man was totally wrong, totally a jerk and I handled it very well.

Thursday was radiation at 10:30 am and then the attorney at 1:00 pm.  This was a very long day for auntie, she's getting more and more tired and wobbly.  She pretty much fell asleep everytime we got in the car and at one point I turned around when we were at a stoplight to make sure she was still breathing.  She's supposed to meet with the radiation oncologist every Wednesday after her session but she ended up not doing that Wednesday.  Thursday, I asked the radiation nurse if she was supposed to meet with the doctor and she told me that the doctor was on vacation and she'd be meeting with the dr's associate after her session.  She went on to say that my aunt didn't take her labs.  I told her that she wasn't getting her blood drawn until Friday's appointment for her Chemo Oncologist and she got snippy saying that she needed weekly labs.  Normally I would have said okay but since she got snippy I got snippy right back and said that NO one told us we had to have weekly labs and that at no time during the orientation with us did she mention that.  I had made arrangements for the chemo oncologist's nurse to take her labs every other friday since she was going to see that doctor every two weeks.  The radiation nurse hands me a slip and says, "you can take her to the lab every other week then"  Mind you, if she was supposed to have labs every week, don't you think she'd have to have a lab slip to do that?. something we never got before that day.  Michelle the chemo nurse witnessed the whole conversation.  So I take the slip and go wait in the lobby with my mom, looking at the slip I noticed that nothing is checked, it's just a generic lab slip.  I go back in to ask the radiation nurse if the lab is going to know what to draw since nothing is checked and she gets all sweet and says, "Michelle says that since she'll be here everyday, she'll do the labs every Friday".  At that point I was like, THANK YOU MICHELLE.  The attorney appointment goes well, but once all the paperwork was signed and completed she tells the lawyer  "Now I can Die", not once, but three times in total.  I'm so worried that since everything is now in order, she's going to give up.  And I can see the fear in mom's eyes.  Auntie says that she needs prescriptions refilled and that she has no more, I notice one bottle has no refills which means contacting the doctors office.  I drop off auntie and mom, then head to the doctors office.  I then find out that auntie's primary doctor has left the practice with no notification to her patients.  What the hell?  So now, we have to find a new primary, but the turn around is that a lady we all grew up with is working as the office manager and said she'd help us out.  She'd get us in with one of the doctors in that location which is so much closer to where auntie lives.  When I got back there was the argument between me and my aunt about her not living alone, especially when she's now had two doctors telling her she shouldn't.  

Today, Michelle drew her blood before her session and apparently her hemoglobins are really low so they sent her straight to the hospital for some preliminary work and she has to have a blood transfusion tomorrow. I asked my boss about auntie's surgeon and he really didn't have much to say, not good, but not bad either.  He's suggested his own doctor and one of the girls in the office I work at also mentions this doctor not knowing I've asked the boss.  So I call our family friend that works at the primary doctors office and get her in next week so she can get checked out by her new primary doctor and they can refer her to a new surgeon.  I've been told that the new surgeon is blunt, he'll tell it like it is, but that's not a bad thing, but they also say he's got a great sense of humor which is a great thing.

Just when I thought next week would be much easier, I jinxed myself.  At least I won't be working late.  I don't envy my sister who's taking her turn tomorrow for the blood transfusion.  It's supposed to be a six hour procedure and she plans on working on the moving in with mom thing during that time.

Day Three Of Treatment

Third day of treatment and all is good still.  She doesn't feel sick or tired.  We were told this probably would happen it wouldn't be until a little into the second week that things will feel yucky.  At least she's optimistic that she won't get sick, that or just damn stubborn to accept that it will be coming.

Today's appointment didn't take long.  Of course there was the confusion from mom on whether or not I was taking them since I wasn't at her house yet.  She forgot again that I told her to meet me at Auntie's apartment so she could stay with her after the treatment.   :::bigheavysigh::: I got her there in plenty of time to change so they took her right in at 10:30 am and she was dressed and ready to go 20 minutes later, that was a nice treat.

After that I took them grocery shopping.  My aunt starts on one side of the store and slowly makes her way to the other side like a turtle.  My mom on the other hand is like the dang rabbit and she hops from aisle to aisle all over the store in no particular direction.  Sad part is, she's still done quicker than my aunt.  We dropped off my aunt and then mom headed home.  I just walked in the door and am so ready for a nap and Murphy, well, she's not a happy camper :(  Don't feel too bad for her, she got her own 12 piece of chicken fries the other day, spoiled poop..hehe

I think we're going to actually move auntie into mom's house this weekend whether she likes it or not.  It'll be so much easier on everyone, auntie, mom and the drivers.  Now to keep mom's health in place, which is not getting any easier. 

If I'm whooped now..what's to come?

The last few days have been a whirlwind.  Try toting around two 80+ year old ladies that can't hear.  I had to take yesterday off because the outcome of Tuesday's appointment led way to another appointment being made on Wednesday.

Wednesday's appointment was a CT Scan so the Oncologist can begin the treatment planning procedure which will take a few more days to complete.  This is when they'll figure out how many treatments will be needed and where to aim the radiation.  There was so much confusion about the medication, because there are two Oncologists, one for the follow-ups and one that's actually performing the radiation.  The nurse for one doctor said that she gave my aunt the prescription, then said she didn't, the Oncologist wanted me to get the prescription when I came back on Wednesday but the nurses knew nothing about it, what a runaround.   When we finally got the nurses to understand, the doctor had already left for rounds at the hospital, the agreement was that I'd come back on Thursday morning to pick up the prescription and with that we finally went home.

This morning was like trying to pull myself onto a boat after I'd fallen out.  Dragging myself out of bed was hell but I made it to pick up the prescription, but no doctor.   No doctor, no nurse and the other doctors staff knew nothing about it, apparently the doctor works out of the downtown office on Thursdays, you think she would have told me that yesterday.  At least one of the other nurses searched the desk and found the prescription. I should have known from the morning that the rest of the day wasn't going to work well.  I told mom that I'd be at her house by 10:00 so she could drop off the prescription before they went grocery shopping like they do every Thursday.  I get there at 10:00 and mom is gone, what the hell?  I track her down at the grocery store and she's telling me she has to go later to pick up the prescription, again, what the hell?  I finally get her to understand, she apologizes which makes me feel guilty and I drop the prescription off on my way home so they can pick it up after grocery shopping.  I get home, make a few more call, and lay down for one second and pass out, only to be woken up a bit later by mom calling.  The pharmacy didn't have all the medication so they had to go back tomorrow but it was going to cost $3300, WHAT THE HELL????  I call the pharmacy that proceeds to tell me that that is her copay, that it regularly would be $4410.  I call the doctor to find out what's going on. apparently the pharmacy had billed it to the wrong part on Medicare.  An FYI for people out there, if you get a prescription for chemotherapy (Xeloda), make sure they bill it to Medicare Part B, not D, D is usually for prescriptions but this is a treatment which should have no copay.  Thank goodness for Kenzie at the downtown office, she had me call the pharmacy and cancel it, and then faxed it to a specialty pharmacy that will deliver it to me tomorrow.

After calls back and forth to my sister, and another sister getting snippy with me because I needed her to call a doctor tomorrow, I'm so ready to pass out.  My sister that I'm going on vacation with in July talked about it and despite the other sister telling us to go, we've decided to cancel the trip.  We both need the vacation but neither one of us would forgive ourselves if something happened when we were gone.  My brother did that when pop was bad and had to come back early when pop went.

Monday will be the appointment that will ensure that all the points are lined up correctly for radiation, a dry run.  On Tuesday radiation will begin simultaneously with Chemotherapy.  We won't find out until Monday how many actual treatments she'll need.  We pretty much have the ride situation figure out for Monday - Thursday.  Because I'm off on Tuesdays and Thursdays I'll be driving, I really hope I can do all this and work.  Fridays are still a bit of a jumble trying to find people  but we'll figure it out.

I convinced auntie to move in with mom for at least six weeks to keep mom from driving and running around too much to check on her.  I hope I did the right thing, we were all thinking it but I had to break it to her.  I basically really didn't give her a choice, I pretty much told her this is what's best.  We'll all gather at mom's Sunday to clean out the back room and move auntie in.  I don't think one day is enough, mom has so much junk back there, I took home a little suitcase I used to play with as a kidlet and was full of stuff.  SHE KEEPS EVERYTHING!  I found not only a Spanish lesson from 9th grade but 5 1/4" floppies.. FLOPPIES!, and lava rocks from a vacation to Crater Lake when I was about 12.   ::sigh:: Pack rats run in the family.

Update

Prognosis, a big and long tumor in an awful place.  We have to go back tomorrow to start the treatment planning process.  They were understanding at work when I called which was nice.  Once the doctor has her attack plan situated it'll be 5 1/2 weeks of radiation and chemotherapy follow by maybe 4 weeks of rest and then surgery.  The radiation will be Monday through Friday for the next 5 1/2 weeks and should only take about 10 minutes a session but I was told to count on at least a good hour to complete and get out.  Chemotherapy will be administered simultaneously in a pill form which is a lot better than having to sit with a needle in your arm.  It's a sad reality when you're handed a packet which includes a step-by-step Advanced Directive Booklet.  From the time the doctor said 5 1/2 weeks my aunt's face dropped and she really just stared after that.  Then it was the comments of, I don't think I can make it that long and the pep talks about having a positive attitude, which seems hypocritical coming from me.  The worse part is her finally realizing that even after the radiation and chemotherapy that's she'd still need surgery and that it was most likely going to be a colostomy.

And my sister came to the realization that our vacation in July, something we all really needed, will have to be canceled.

And I thought it was crazy before...

Question: Why am I up at such an disgusting hour on my day off?  

Answer: Today is when we figure out what life is going to be like for awhile.

Auntie had been sick since before Thanksgiving and due to stubborn situations and lack of a new doctor that would take her insurance we didn't get her into see one until after the new year.  From that time on, I thought things were crazy.  The four nieces taking turns to transport her and mom to all the appointments.  Trying to coordinate results and instructions was a bit difficult.  Four different people, taking her to three different doctors, it was crazy.  

It was try all these medications, then a pacemaker, get her healthy enough for a colonoscopy and then wait for the results.

The colonoscopy was ugly, massive malignant tumors and colon/rectal cancer.  Now it's on to the Oncologist and today is the radiation consultation.  The sister that took her to the primary doctor was told that it would be 4-5 weeks of radiation therapy, 5 days a week for 2 1/2 hours a day.  And today is my turn to take her, so off we'll go to the South Sacramento Cancer Center for a 9:30 am consultation in hopes, well, honestly, my hopes aren't up.  My sister was already told that most people her age and in her condition don't complete the regiment.  

I guess this blog is a way for me to vent and document the process.  I better peel my butt of the chair and head out, the traffic is already back up outside due to the I-5 closure.

Oh and the News 10 helicopter can bite me.  Two days in a row that damn thing has flow above up early in the morning to watch the commuters crawl through the detours.  Do they not realize that some people down there are trying to sleep?  And they were up there again when I got home from work.  I'm really hating News 10 right now.