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.

Part 1-good excuse this time

I haven’t posted in a long time but have a good excuse since I’ve been in the hospital for about a month and a half. I am going too try to do a couple catch up posts about what lead me there and the experience then try to stay more current. I had tried to do this a couple of times with my new iPad but the typing is too hard for such long posts and the whole thing disappeared on me before I could hit publish so I got discouraged.

Okay, so after dinner on July 31st I went to the bathroom and got the worst pain on that 1 to 10 scale, in my stomach. Took only a few minutes of it to ask Andy to call 911. Got brought to a hospital we didn’t want to go where we were there for 5 hours and still not in to see anyone so A. had them help put me in the back of our car where he brought us to Jeanes Hospital, not a hospital we really knew per se except that it is the admitting hospital for Fox Chase, the cancer hospital I go to and literally right next door to FC. They took me in for emergency surgery right away. My bowels had perforated. This is not unusual late effect of radiation and I have had a lot of pelvic radiation, not to mention the cyberknife last fall. THey tried very hard to avoid the bowel but it’s not fool proof, plus my initial radiation was a general inthe pelvis type and a high dose internal type and the 1st one for the recurrence was very strong, then the cyberknife was on top of it (trying to avoid the sensitive areas like the bowels.

So I had two surgeries, the first an emergency surgery to fix the perforation. As far as what I’ve been told the dr. told A. that he hoped that I survived the night. Then there was a 2nd (both major) surgery to try and put things where they belonged, make the stoma, etc. I think that was the surgeon whose name sounded like a place in Yugoslavia, confused me as to his real name to this day LOL!

So that was the beginning. I spent some time in CCU, eventually got out of there and into the regular surgical floor. I don’t think I really was aware of much till a few days before leaving CCU, time was so irrelevant at that point. I ended up getting released from the hospital into a live in rehab facility. It was a horror, to me at least. My friend C. spent the night with me that first night thankfully or I think I would have gone insane but she helped me a lot being able to talk to me and just making me feel safe and that I had choices, the biggest one being that I didn’t have to be there. So the next day I asked to go home. I slept on the recliner chair in the living room and realized that we were just too ill prepared to be able to care for me at home just yet. So the rehab dr. (who handled my dramas very well) had us readmittted to Jeanes. The emergency room nurses were really mean about it but luckily the ER dr. worked his butt off to get me readmitted (made harder by the fact that I had no dr. that had privileges there, just that I was a FC patient.

So after spending some time crying and a long time waiting in the ER I was readmitted I think to either a general floor (could have been surgical, can’t remember). Once there A. and the drs, worked on getting me accepted into their rehab program which was the perfect solution. I felt much much more comfortable in the hospital than the rebab hospital.

proton beam

Proton beam is not going to be an option for me, regardless of whether or not the panel accepts me. The dr. told me that because I would be radiating the area (this is the lower back) for a third time the likely effects would be kidney failure, and my spine would probably break apart and I would be paralyzed. And he asked if I would be okay with that. Uh, no? Weird appt., he was very upfront which was great, but the way he presented it all kind of just took us both aback. I barely had anything to say as I was just kind of shocked I guess with the matter of factness in the way he said it all.

So he agreed that cyberknife was good for the skull issues and didn’t feel that proton beam offered anything better. So that’s good in that we have everything proceeding along for that.

Got a call from one of my favorite nurses at pain management today. My dr. is on vacation but she said they had been thinking of me and she wanted to know how it was all going. It was nice having her check in, it’s not like it was protocol or anything, just something she wanted to do.

I went to my internist’s office this afternoon (my dr. didn’t have hours this afternoon so I saw one of the other drs. and I did like her very much). She confirmed that I very likely do have thrush in my mouth so gave me the Nystatin swish and swallow yuck. There are dissolving lozenges I could have used but with the half numb mouth they would have driven me nuts so as icky as this stuff tastes I will try this first. It’s 4 times a day for 10 days (or until it goes away if it is longer). My blood sugars are a mess so she added another pill to the regimen. They were doing well till the increase in steroids, which at my current dose really wacks them out. I’m hoping to push off insulin for a while longer, not sure if I’ll be able to lower the steroid dose soon after the cyberknife or not, so I’ll try this first.

I went mainly because I’ve been having urinating/pelvic pain the last few days. I’ve never had a bladder or urinary infection before so wasn’t sure if I did now and I don’t have one now. We’re thinking maybe it’s gas related. With all the increases in both the narcotics and steroids it’s more constipating. It’s not that I am constipated either, it’s just that things hurt more to move along. So I decided earlier today to add a stool softener and already I feel a lot better, so hopefully that will help things along.

I am feeling a sense of relief tonight in that we are doing the right thing with the skull radiation and while it would be great if I could have had proton beam on my spine for pain relief I am surely not going to hurt myself like that in the process to get pain relief. I’m still glad I went though, the whole proton beam thing is so elusive since there are so few centers running right now. And an aside I got to see my friend’s Fritz Dietel’s sculpture- -in person (this is in HUP’s brand new Perlmann Center which is a new building that is just for cancer patients and has a lot of artwork in the various spaces. His is right out in the main floor for everyone to see (some pieces you only get to see if you go down that hallway to an exam room for instance.

So we go on. I’m looking forward to a few days off from drs. Hopefully we can get some work done on my dressing room this weekend and do some enjoyable things out of the house. I’ve gotten a little better at the pacing of my activities I think the last couple days so I feel a bit better. I’ve been able to do laundry today for instance, and while it’s quite slow going up and down the stairs it’s not so painful. I ordered myself some medical supplies, a stool for the shower and some suction cup foot rests for the shower walls also. Also a super lightweight portable wheelchair for the bad days and to bring on our vacation. I think it will make our traveling a lot easier, I can’t imagine doing all that walking in the airport unless things change drastically by then. In the meantime we can use it for shopping and other things around here too. Since it’s not about stability a cane isn’t really all that helpful, but I did also order a couple of the type that have a base and 4 small feet (in a pretty blue color, not the ugly metal institutional ones) to use around the house where I might need help lifting myself up. And a thing you put over your regular toilet seat that both raises it and has little handles to push up on, for the low toilet on the first floor. Eventually we’ll replace it with a higher one as I’ve been wanting to anyway (we have a higher one in our master and I like it being the shorty that I am). I am not embarrassed by using these things, I just want to function as best as I can. I did discover today that it’s much easier when I get out of the car in the driveway to walk the drive down to the street and come up the front walk with its quite shallow steps than to walk up the rail-less front steps that are also quite high. The actual steps into the house are high also but I’ve got some areas to grab (not to mention A.’s arm).

So tonight I want to get comfy in bed with A. and watch something. Maybe more Extras, we have the series dvds (only 2 seasons and a special finale dvd) and have watched about 4 or so and they are really funny. Humor and a comfy bed sounds loverly right now!

I’m going to try to post more often!

So, quick update for anyone who doesn’t get my direct emails. The cancer has begun to spread and an mri of the brain has confirmed that there is a bone met at the base of my skull in the sinus cavity. It has caused numbness on the left side of my face (pretty much the whole face except the lower jaw, but includes everything else including my eye, my mouth, nose, lips, tongue etc. It’s very annoying, makes eating hard, swallowing my pain pills often has me finding the tiny things in my mouth, food also and the dr. I saw today says I seem to be starting a case of thrush in my mouth now too. Anyway, it was causing pain also, sinus type pain mainly around the eye, but the higher dosage of steroids, which I started a couple of weeks ago has calmed most of the pain in my face and has possibly been the reason that the numbness has arrested at this point. Meanwhile an mri of my spine has at least one dr. and the radiologist feeling that is has now moved either into my spine (in the L3 area, which is next to the L2 area where the original tumor has come back to life, IOW at this time the cyberknife is now considered a failure as the tumor, which has shrunk back for a few months, has now “asserted itself” to not only be the original size, but likely a bit bigger.

So, first things first. I need radiation to stop the progression of the skull based tumor. I went to see my rad onc who did the cyberknife today for her opinion. It’s apparently pretty standard treatment to use cyberknife for this type of tumor, which is also a pretty fairly common spot for “cancer” (in general) to come back. I started the ct setup today, which included getting the mesh mask for my face (no head drilling thank god, but just a form that will sit over my head for the hour to hour and a half the treatments, probably 3 to 5 total). While we are still going to see the dr. at HUP for his opinion on proton beam therapy, even if it is an option some of the decision is timing. I need to do this as soon as possible. The longer it is there, it grows of course and the risks are higher for more damage (today my rad onc was talking about optic damage, ack!, but it should be a problem if we keep moving on this). So of course it being summertime my dr. is going on vacation tomorrow. But by getting started today she thinks we can get all the planning done this week and next while she is away and then when she comes back she can do the final approval and I can start that week she comes back. I would like it to start faster but its about what it would take even without her going away so it’s good.

So unless the proton beam is a yes first, and then can be done in a similar quick fashion it’ll likely be cyberknife. But the rad onc wants us to talk to the proton dr. (who she said is a highly experienced rad onc specialist and will be able to give us some good comparison info too) about the possibility of using proton beam for the new spine met. It’s really too close to the cyberknife field for anymore of the other types of rad, but just maybe it could work with proton. She really has no idea, but figures it’s worth an opinion. We also need to keep moving on the clinical trials contacts, maybe that could help.

The big confirmation of news today is that the treatment for my skull met is not likely to give me relief from the numbness. It could, but it’s one of those nerve things and the longer the tumor sits there the less likely the nerves will come back. The other big thing is that we have most definitely turned a corner. The cancer is asserting itself in a way it hasn’t before by spreading. Because of the specifics of my stupid tumor even when it wasn’t spreading it has been in a spot that causes so much pain and side effects. Now that is even worse with the new spreads. So our treatment choices are not only limited, but not effective. So we continue our search, but I will admit to being less optimistic that we’ll find something. I hope we can, but I think the likelihood of pain relief is low. I’m hoping we can at least cut the edge off of it, because I am reaching some limitations in terms of how much more pain meds I can use. I have been able to cut back one of my oral pain meds (the ones for breakthrough pain that I take every 4 or 5 hours) to 3 from 4 so that is encouraging. I think the stress of all this plus the laying on the mri beds (and having the actual rad treatments will be even worse than that) has poked it into such a state. But once that is all over maybe it will subside some.

Anyway, I will admit that right now I’m mainly just frustrated about my face. Not only is sooooooooooooooooo fricking annoying, I just can’t begin to say how much I do not want to get used to this for the rest of my life, it’s constant, it’s an absolute constant awareness of it. At least with the back pain I get some relief for at least a part of the day every day most days. This never, ever lessens, never mind going away, it’s just a constant state, all the time the same.

Okay, enough of that, some good stuff today is that I bought Z. a guitar (and various accessories) yesterday online and the guitar came today (the accessories should all come tomorrow when the guitar was also supposed to come but it came early). She plays the piano seriously, at a very good music school during the school year, will be doing this through high school with no negotiation. But the guitar is for fun! She wants to learn to play it but it’s completely low-key. She’ll get a few lessons here and there as we can fit them, and will be getting a book/cd course too, but it’s totally up to her how seriously she wants to get into it or not. I just want her to have fun and control over it. So I guess right now anyway I’m as excited about it as she is!

Okay, tomorrow is not a dr. appt. for me, but a well visit for Z. Then Thursday is the proton beam dr. for me. After that maybe a break for a week before starting up the rad hopefully the next week. Now I can start focusing on the Hawaii planning I think, I can at least try to focus my attention to research which I honestly couldn’t manage these last few weeks. I think we’ll be dealing with a portable wheelchair. In fact I was talking to A. about some adaptations we need to make for the house because of the heaviness in my legs which is making getting up off the toilet hard and going up stairs (I can do it with a railing, but we have some stair areas without them). Even with them though it is hard, especially if I am tired or in extra pain. So some new railings, a new higher toilet for the first floor, the portable wheelchair for our vacation, etc. are other things I need to research and get done. I’m fine with it, I just want to function as normally as possible so if these things help I will do them willingly.

Time to head up to bed!