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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.

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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!

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!

numbness

My latest symptom (side effect or whatever) is numbness in my mouth. Mostly on the left side (the opposite side of the tumor, the opposite side of the numbness that I have had and continue to have in my right thigh). It began slowly as I went back on the steroids but really took off over the past week. It feels like I’ve had a shot of novacaine at the dentist. It’s driving me nuts. I hadn’t told any drs. about it until today, not because I was hiding it but because I figured the pain management dr. (who I had an appt. with this afternoon) would be the dr. to mention it to and since I had the appt. scheduled it could wait till I saw him.

He was glad that I don’t show any neurological symptoms with it, just the numbness, but I still need some kind of brain/head scan (ct and/or mri). He’s going to talk to my med onc about it and see what he thinks. Also he is going to work on getting me some extremely heavy duty and hard to get pain med for my mri that I need on my back (and also see whether it’s possible to do the head one at the same time). It’s a type of fentanyl that dissolves in your mouth, works extremely fast and hard and then wears off in an hour. Should solve all the issues I have, but of course it’s very, very strong and because of that has a huge amount of red tape involved. It may take a week to get approval, if I get approval. There is one pharmacy in the whole country that dispenses it and it would be fed-ex’d to me. Kind of a scary, I hope it doesn’t make me sick while I’m in the machine. I’m hoping it just puts me asleep. He would like me to have this for those extreme times that I need it, which unfortunately have been too often these last few months.

He also noticed how badly my pain patches are sticking (or should I say not sticking) to my skin. He allowed me to try to work on that before giving me yet another patch (since I’m not getting the full amount most of the time). The humid and hot weather are what’s making things worse. I may have to do some pharmacy shopping (oh joy, I get to pharmacy shop for narcotics, bleh!) to see if I can find a reliable pharmacy that carries a better patch. Right now I have a very reliable pharmacy, but the patches stink, or a very unreliable pharmacy that carries patches that are smaller and stick better. Neither one is acceptable but I’ve been going for the reliable one because the anxiety of running out of pain meds is too much for me.

Meanwhile one more day to get Z. ready for camp. I’ve barely done anything because I am asleep most of the time lately. It’s a fatigue that is beyond tired. A. seems just as sleepy as me sometimes, in fact at the drs. this afternoon (he went with me because I’m not driving these days) while we waited for the dr. and nurse to come back in with my instructions and scripts we both were dozing in the chairs. I spent the whole evening sitting in front of my computer asleep (and much of the afternoon when I was home). This is why I hardly can respond to emails, label and gather Z.’s clothes or do any research on our potential trips. I sit down and zzzzzzzzzzzzzzzzzz.

Which is where I should be now, but of course now that it’s after midnight I start to wake up. Why is sleep so strange that way? But I think if I go up to bed and put my laptop on my chest and try to do something (or read a book) I’ll be sound a sleep in no time. While not getting sleep at night makes things worse, actually getting sleep at night doesn’t seem to make it much better, I still am sleepy all day. I think it’s all the pain meds, but who knows. Could be all the stress lately. A. and I are both feeling the effects of that. We’d better figure out where to go for our little getaway soon, I think we both really need it!

scan today

I had my pet scan today and boy, that was a really painful ordeal! I just couldn’t be on my back without being in unbearable pain. Normally a pet is about 45 minutes, something I couldn’t do. But they have a new machine and it was supposed to be cut down to 15 to 20 minutes, but I couldn’t get by a couple minutes, never mind that. The tech called the physicist in and we tried various things, positions were very limited by the test, but he found a one inch pad which helped as the hard board backing of the machine killed me. We also tried my belly but that didn’t work. Then we tried some rolled towels in various places around the small of my back, upper thighs etc. and managed to get it to the point where I thought I could bear it. It was very hard, and mid way through I almost gave up, but I kept myself going, moaned a lot (and got reprimanded by the tech because I think he thought I was moving my mouth/face but I wasn’t) and eventually I got through it and it was done. I am exhausted!

Anyway I got a call from my med onc, who for some reason is the dr the radiologist called even though the rad onc is the one who ordered the scan. The results are that there has been some improvement, but since my pain is getting worse they suggested an MRI to look for nerve damage,edema, some cause of my increased pain (not sure what they will do about it but one step at a time as my med onc told me today). I’m not sure how I will get an MRI (45 minutes or so) without being knocked out completely though, but I see my pain management dr. on Thursday so maybe he has some ideas. I haven’t talked to the rad onc yet, but she’ll call either later today or tomorrow once she gets the report.

So all in all, good news, in that the cancer continues to lessen, albeit slowly, and there is more of an attempt to deal with finding the exact source of the pain. And it looks like we can begin to start planning our summer trips, first a long weekend for A. and I while Z. is in camp (she leaves this Sat. and I have done nothing to get her packed and ready. I’m really just overwhelmed with everything right now) and then our trip to Hawaii for the three of us later this summer.

I called the pain management drs. yesterday and spoke to the nurse late yesterday afternoon. She then spoke to the dr. and called me right back. So he said I was to go back on the steroids, only a short boost to start, two 2mg doses per day for 4 days and then one 2mg dose thereafter until my appt. in 2 weeks where we’ll see how I am doing and see what to do next. He also said to add another pain patch (that makes 4, two on my upper arm, two on my upper back). I started this all last night and woke up this morning feeling much better, but it will take at least a couple of days or so to really feel the effects of the pain patch and probably at least the same maybe longer to feel the steroids effect.

I’m frustrated, I really wanted to get off the damn steroids this time, I was determined to make it through the pain and ill effects, but I just couldn’t. Not only was it bad, really bad, it’s also the last weekend before the closing on my mom’s condo next week and I’m really busy with that. I couldn’t deal not only with the physical work I need to do, but the mental work. Just writing an email was truly exhausting and at times impossible. Working at the computer at all made me nauseous.

Well hopefully I will continue to feel better and better over the next few days. Next week, besides the closing is also Z.’s bday and her sleepover bday party. I have a lot of stuff to do involving making dr. and test appts. and having various dr. and test appts. over the 2nd half of June and beginning of July, besides a lot of other things, but the medical stuff always drags me down. I HATE making and attending medical appts., just hate it. Ugh.

Now I think I should go lay down and take a nap, or maybe wait and eat lunch with A. and then go. I need to get as much rest as I can so I can get as much energy as I can for the clearing and closing.

Crap

As in I’ve been feeling like lately. I have been weaning off the steroids, guaranteed to make me feel awful in many ways, fatigue, weight gain, other worldly, more than fatigue, it’s falling asleep while eating dinner kind of tired, nausea, oh,┬áthe pain just gets so much worse, which is why I am weaning off of them again. I always end up back on them because of the pain increase. I also have had a bad case of lymphedema flaring up in my right leg, which is the other leg when it comes to lymphedema, but the same leg as my pain (which travels from my lower back around my hip and into the front of my thigh down to my knee, but not below).

I saw my lymphedema dr. last week and she sent me off with a handful of prescriptions for tests and physical therapy including being fitted for a nighttime compression garment because I refuse to wrap. Think of wrapping your entire leg from your toe to your waist in something similar to an ace bandage every night before bed. Not gonna happen, so I will pay whatever it costs, regardless of insurance coverage for a garment that while still be difficult to get on and off, won’t be wrapping myself like a mummy every night.

I have started the every weekend trek to my mom’s condo three plus hours away till the closing to clear out the condo and of course there are big glitches coming up that our lawyer swears will not delay the closing. He’d better be right, I can’t take the anxiety already, never mind if it screws things up. I have also got myself into a volunteer situation for Z.’s school for a fundraiser for her 7th grade trip to Costa Rica which blindsided me with a ton of emails from this that and the other with things to sign and decisions to be made when I haven’t a clue what is going on.

Meanwhile I can barely function. Driving is hard as I get sleepy at stop lights and the pain makes it hard to move my leg (right leg, the driving leg). I managed to get to my support group on Tuesday but that’s it, I haven’t been out since and haven’t gotten any of my errands done and tomorrow we are off to the condo for the weekend. Mostly just sleeping and getting out of bed and eating breakfast is a struggle enough for the day. Maybe by afternoon I start to get some pain relief but it doesn’t last. I did get laundry done, about 13 or so loads over the last three days. I don’t carry the laundry baskets up and down the stairs (well, sometimes I drag them down, okay, most times, and I also drag them up the stairs too, then I pay for it the next day with more pain, but it’s just about the only thing I feel like I get accomplished and I need that feeling of accomplishment or I will get depressed).

Good stuff, we did manage to get to Cirque du Soleil on Sat. night to see Ovo. Wow, it was so good, it was definitely up there with my favorite shows. It was especially wonderful to get to stay for the Q & A after the show where the ladybug lead the discussion. She is so cute!! We got there quite early so had a parking space about as close as one could to the entrance which was helpful as walking has become very difficult because of pain lately. The other thing is my ears have this pounding thing that happens when I stand up from sitting, especially if I’ve sat a while. It’s like sinus, like when you can feel your heart beat in your ears and it makes you dizzy. I think I am going to need a cane for those times if this doesn’t go away. It got better for a few days and then started up again today. A. said that a storm is coming, he thinks it’s changes in barometric pressure. I have had this problem in the past but it’s been years.

All this stuff is making me feel like my health is deteriorating and it’s scary. It’s hard not to think it’s cancer related, but I am trying to take this all one day at a time. But that’s hard. But I try.

Life is just been a struggle lately. I try to focus on the good stuff. Like we want to take some of the proceeds of the condo sale and go to Hawaii this summer, so I am spending some time reading guide books and on airline sites figuring out multi-city flights. I can’t book anything till I get my scan results later in June, but in between nodding off while reading the books or the computer (I can barely stay awake while reading these days) I enjoy the research.

Okay, now I really have to get some sleep, it’s almost 3am.