Hospice time

I entered hospice this week. I signed the papers this week. I think this upset many people so I’m going to do a little explanation of what it means. The most important thing is it means that your drs. have signed off saying that there are no treatments left for your cancer. We knew that already but just got verbal confirmation of it. If I weren’t in the physical state I am in maybe I could do chemo but I really can’t handle it anymore. There is the part no one wants to talk about which is a 6 month or less time frame they think is left for my life. This all means nothing, I will live as long as I live, hopefully a long while. However LOL, I can be technically kicked out of the program but that’s unlikely.

Okay, so hospice makes more things covered by insurance. We can keep the same visiting nurse and the same physical therapist. I will get a new IV nurse for the pain infusion pump. They sent over a home health aide (the difference being that it’s an additional service whereas before it took away from insurance paid but limited visits from the PT and the home health nurse- with hospice those visits are unlimitedly included). Andy has now taken 3 months of unpaid leave of absence (please don’t ask about our finances, we will be fine) which helps immensely. So in general we at peace with our decisions.


ups and downs

My days are usually filled with ups and downs, understandably. If one thing is bothering me one day it is likely to be something else the next. The days that are the hardest are the ones where more things bother me, either at one time or one after the other. Pain is the hardest, queasiness a close 2nd. It’s usually what I battle most days. I have tried various things but there are just those times I have what I call a pain crisis. I had one yesterday, that I just could not get a handle on the pain. Thankfully, pain management was able to get me through it. That and the at home acupuncture treatments I’ve been getting. It’s not instant relief but between it and pain management I got through a day I was afraid I wasn’t going to get through.

I am open to various alternative treatments. Particularly because there are limited things traditional medicine has to offer me at times. So acupuncture, hypnosis, a movement therapy called Fendenkrais (sp?), reiki are some of the things I’m doing or have done. I think they are all helping me in their own unique ways, but the similarities are also part of it, working with energy, with the body, etc.

Today my digestion is acting up, lots of reflux which wrecks havoc because it makes it hard to eat. I need to eat for obvious reasons, healing (in particular protein), taking pain meds, the reflux itself is a catch-22 in that I need to eat to keep the reflux down yet can’t eat because of the reflux. Ugh! In general I need to eat low fiber and low fat. I’ve been using Ensure/Glucerna liquid meals at least once a day. I have a hard time eating for a few reason a big one being my numb mouth. It has begun to affect my taste, and definitely makes everything feel dry, and if things are dry and tasteless (let’s not even talk about trying to eat chicken, one of the easiest proteins to digest for me, taste awful and gags me). I love my MIL matza ball soup, but enough already! There are supposedly all the limitations on what I can eat from what we read, but once we get to the GI dr. this week we’ll see if I really have to follow them. I hate the idea of putting myself in digestive pain from eating, say a salad, but I need food I actually like!

Okay, somehow I managed to get by on 3 hours sleep (if that) last night and it’s almost 3am now so I’d better get some sleep or i’m going to really feel sick tomorrow. Of course I just drank an Ensure, have to wake A. up to pee (which makes me feel horrible).

to Ginny

I found out just this evening that a friend from my mom’s list passed while I was in the hospital. She had pretty aggressive breast cancer. I can’t remember some of the specifics, how long since she was originally diagnosed. And whether her 2nd bout was a recurrence or 2nd primary, but I do know from the speed of the 2nd cancer and the treatments that it was aggressive. You wouldn’t know this if you didn’t know breast cancer because she was so strong, continued living her life as if it were just a bump in the road. She didn’t post to the list very often, which I also think may have given some false hope that all was well. But really it was her shining optimism throughout the whole thing. She was a good person who I was lucky to meet and have lunch with one day in St. Louis. She will be missed by me and many others. I’ll see you on the other side someday Ginny.

Got out of the house today!

There’s this very cool apparatus we were given by the insurance company called a Hoyer lift. It literally lifts me out of bed and into the wheel chair. I love the feeling of dangling in the air and try for all the dangle time I can get :-)) We think that it’s possible that using the van for non dr. related trips could screw up our ability to get in home therapy, pt, nurses visits etc. so have to find out about that, soooooo we’re really not supposed to stop at Target on the way home (got that?). My dad is paying for the actual rental of the van so that is not affected but someone at the hospital rehab (I think the social worker) told him this info. We have another social worker now so we need to ask her.

When we got home we got the gel cushion for the wheelchair, which I put on top of the cushion (memory foam) that we got with it, it was an extra $65 or so and well worth it. I used it during and after dinner tonight and got a good 5 plus hours I think with much less pain than usual, Yeah! The more I can sit up the better it is for everything, digestion in particular, and also frame of mind. So something right is happening and I am happy.

I had my acupuncture session today (something we are paying for ourselves, we found a guy who is starting an in home service). I think he is great. Today I had my session slept through the whole thing, so relaxing, and had very little pain today, my digestion, which started off today with burning and had been so bad the day and night before that I had thrown up (and still didn’t feel better) was very good today. I am hopeful this will continue and last longer as we go along (right now we’re doing once a week. Another good tool in the arsenal!! Plus I like the guy, I think he’s compassionate and knowledgable (and will research what he doesn’t know). In fact my aunt is going to get some sessions too for her vertigo. Next we have to find out more about the services that the palliative program offers, we have heard massage which I would LOVE!, but I don’t know when and what else.

So pain dr. appt. went well, I’m to use the onsolis which is the fast acting fentanyl lozenge thing I put in my mouth and got better instructions onto how and when, I can use another dilaudid when I take it, which may help it work. I truly have an opiod tolerance with all I have taken over the months so can handle more than someone in the same surgical situation without all that history, and having been seeing my pain dr. for so long he knows my tolerance abilities.

So on the fun side I did some clothes shopping tonight. Wearing clothes is a whole different thing these days. First of all, no underwear, not worth all the extra flipping back and forth to get it on, however I wear and open (not sealed up the sides) disposable diaper to catch any pee (it often escapes overnight without my knowing it. During the day after washing (something I participate in but I need help with, this has become one of my auntie C.’s jobs. One of the things we’d like to do is call my hair dresser and see if she’ll come and cut my hair, she can also use the no rinse shampoo and conditioner I bought. I never did get my shower in the hospital because we were going to do it the last day and I was soooo sick that day I knew just turning my head would make me sick. They did weigh me though with some contraption. I don’t remember exactly but I did lose some weight, I think maybe 8 to 10 pounds. So clothing I need loose stretchy cropped pants of which I already have some. I am ordering some oversized ones to go with them so the laundry doesn’t need to be done so early. I have a fair amount of stretchy big tee shirts but I ordered a couple more , and also ordered the same idea in 3/4 and long sleeves. I tend to be cooler than everyone else and at night I take off the Pants (well, with help of course) and just stay in the shirts, no bra, again more trouble than it’s worth, in fact I think it would be pain ful. I don’t wear shoes but should so today, when I am in my chair I am wearing Z.’s crocs but I ordered a pair of my own, slightly bigger sized in what color would you think? Why purple of course!

Got a really nice card from Tricia on my mom’s group (she signs her full first name on comments so I figure it’s okay to say it. I really enjoyed the card and what she wrote on the card, and especially the upcycle bookmark she enclosed. I haven’t shown it to Z. yet but I know she will love it as it has a Japanese woman and theme on it. Thanks Tricia!

And one last thing I ordered was a resin recorder for Z. She took lessons at school in 3rd grade and is back to playing it, but my old recorder is wood and I don’t know if it’s warped but it’s not playing well and I know she is better than the squeaks it produces. Worth the $15 to try it out. I’m having a ball getting to shop online. I always loved shopping and had been feeling cut out of it even before the surgery. thank goodness for online and amazon and lands end!!

So lousy day yesterday but ended up being a good day today. Cross your fingers for another good one tomorrow. I’ve got pt and the nurse coming tomorrow. This weekend my IL’s are coming (with some more matzah ball soup, yum!)

Part4- good excuse this time

So finally, finally, finally last week I was released to go home. Finally! I had been “graduated” from rehab, complete with signed (by the various therapists and nurses) with my certificate of completion handed to me as I was wheeled out moaning in agony as I was brought to another floor (I can’t even remember which at this point, but either general or gi). They were all so sweet. Everybody in the hospital pretty much knew me at this point. Many were confused wondering why I was still there since I was supposed to have gone home from rehab. The vast majority of the nurses and therapists were really wonderful, so nice and very caring. It really helped, but especially those last days when I was in such a crisis with being sick and in pain, to know that they were all rooting and praying for me. Many of them came in and told me every day they saw me that they had been praying for me. I am not a religious person (I am a spiritual person, just not tied to a religion) but ALL prayers are deeply appreciated. I truly know that they have helped me get through a lot of the particularly big crisis in my life. Like Z.’s very early prematurity (my 7 weeks of hospital bedrest and her 8 weeks in the NICU), our fertility treatments to have her, all the cancer crap etc. My first gyn onc once told me I was the kind of person who took lemons and made lemonade in my life. Believe me, there are many times I just want to let the lemonades rot and feed them to whatever animal will eat them, but I try not to go to that place too often, doesn’t help. I find that each crisis requires me to resist it, hate it, throw it against the wall, but then I adjust, the new normal we call it. I’ll admit that I have quite had it with this phase of this crisis, but since I am finding small improvements, like better upper body strength, I cling to those for hope that it will get better.

So eventually last week I was released from the hell of the hospital and we are home. It’s not easy here but so much better. A. is my hero, there is no way we could do this without both his emotional and physical strength. My aunt is coming tomorrow for a month (or maybe more) to live here and help out. That is going to be so great, she can help in so many ways so A. doesn’t get burned out. I told him, there’s no way I could take care of him the way he does me. He’s truly amazing. It kills me to have to wake him up in the middle of the night to use the bedpan or ask for something to eat (because if I get hungry I have to eat quickly or I go into pain and terrible gasiness which of course causes pain.

Digestion is probably my worst thing right now, trying to find foods that are low fiber, low fat, don’t cause reflux or hurt my stomach. My MIL’s matzah ball soup goes down really well, as does that really thin Pepperidge farm sandwich bread. Also mango water ice. Poor A. has to make my meal and then something different often for them (and sometimes they eat different things too). That should be easier when my aunt is here.

Okay so hopefully that’s a good synopsis and from now on I can write about my current days.

Part3- good excuse this time

So again, the time line is fuzzy but at some point my body went into a digestive crisis. I had terrible, terrible reflux and it was affecting my ability to eat. I was on a food watch, they counted all my calories and I was kind of treated like I was failure to thrive. Being overweight much of my life this was bizarre. But it just hurt like hell to eat. While they were giving me insulin for my diabetes they didn’t care what I ate and encourage sugary foods if I could tolerate them for the calories and just adjusted the insulin. I was not on insulin before going in the hospital, but the steroids where shooting my sugars up high. A. got a GI dr. involved, the dr. “in charge” of me was very nice but a bit of an idiot. If A. wasn’t there nothing would have worked right. At one point he completely took me off the steroids, why? who knows, but it sent me into a tail spin fast. As much as they have negative aspects, right now (and then) I need them. At another point he tried to do it again and A. literally yelled at the man. He was from India I think and every time he saw me the last thing he wanted to do was look at my tongue.. I was trying to figure out if it was some Eastern thing or what. Funny!

So I went out of rehab, to GI, to general surgery, to all different floors it seemed. By far the GI floors were the hardest. The tests were no fun, like getting a ct-scan was really painful (positioning, the hard boards you lay on etc.) not to mention the tests and the NG tube that was down my nose for over 2 days. Now that is a torture device the government should try on the terrorists, they might talk fast with that. UGH!!!!!!!

Part 2- good excuse this time

So much of my time line is fuzzy for the next period so I’ll try not using that method to write this next part.
So I had physical and occupational therapy. They had a machine that had me able to stand up, however it kept triggering panic attacks and I even passed out at one point, so I was kind of scared of using it. They actually had me stand up with three people’s help, but I was standing. Talk about exhausting, I was wiped for the next day when I did that (I think I was able to do it twice all together). I learned some exercises for upper and lower body strength, some adaptive things (like they gave me a grabber to help reach things while in bed, I’ve actually used it a couple times last night).

One thing is that over time my upper body strength is improving, which helps me to be able to do a lot more things in bed. Like my laptop, which I am on now. It’s only recently that I could really use it as it was too heavy (and it’s a fairly light laptop, a 15″ MacbookPro). Also just maneuvering my various things on the bedside table (the kind that can go over the bed, I think we need a 2nd one, it’s a pain having to change things around constantly.

A friend from Z.’s school has just helped us out tremendously. She used to be a physical therapist, plus her dad spent some of his later time in a wheelchair, so she let us borrow her ramps for the wheelchair. This is tremendous because they cost a fortune! So A. is outside now trying to find the best way to place them to get me in and out of the house. She also has given me some great advice on both exercise and things to do that will help strengthen the right muscles to help get me walking eventually or bearing weight or just moving in bed. SOOOOOOOOOOO much appreciated. I will be getting some in home physical therapy but we just don’t know when it will start yet.So meanwhile I have some things to add to my exercises.