Slowly Recovering

I did not sleep that well last night even though I took Ativan because my ankles and feet started aching about the time I went to bed. Ibuprofen didn't help and having the heating blanket cranked up didn't do the trick either. So instead of sleeping I just laid in bed drifting 1/2 in and 1/2 out of loopiness and wishing I had something to kill the pain. I did get some sleep but it was pretty restless. As a result I felt more out of it today than I did yesterday. I "feel" better but the fatigue is really setting in again. I think I'll try the Ambien tonight. A friend also suggested trying "Icy Hot" on my achy legs and feet and see if that helps so I'll give that a try, too.

I still haven't heard anything from the Doc about the lump on my head either. He must be out of town this week. I hope I hear something next week. Until I have an answer I'm just assuming the worst -- that it's another tumor, and that's just depressing.

I Love Ativan

I don't want to jinx myself but I have to say that having Ativan available to let me sleep has made a significant difference in how I feel today. Every single time I've had chemo in the past I get virtually no sleep between Day 3 and Day 4. I have always felt pretty bad on Day 4, running into Day 5. Last night I took an Ativan when I went to bed at 9:00. I can't say I slept like a log but I actually slept and got some real rest. I woke around 3:00am and probably would not have gotten back to sleep but I took a second Ativan and went right back to sleep. I didn't wake again until Darcy was leaving for work at 7:00am. I got up for an hour or 2 and then went back to bed for a couple more hours. I actually feel like I have a little energy today... more like I would typically feel on Day 5. So I have my fingers crossed that this is a meaningful difference in how I'll feel and that I won't be just crashing later than usual. My appetite is even better than it has ever been historically on Day 4. I'm really pleased. :)

Chemo Number 2

I went in for chemo on Friday the 26th. I really liked the chemo nurse I had that day. She had helpful suggestions for dealing with side effects. I didn't get a private room this time, but she set me up in a pretty private corner that was surrounded by glass walls. It would have been really nice on a sunny day, but it was a little cold with the snow outside. The nurse kept us well supplied with warm blankets so it wasn't a problem. Being out in the more public area you could overhear other parties' conversations and I was a little taken aback at how demanding and snippy some of the patients were. I think the only problem I had with the spot was the TVs are set way in the ceiling so I had to recline way back to comfortably watch TV. At least I was able to get online so I could entertain myself in other ways.

I've had surprisingly more energy so far this time around. Of course tomorrow is the bad day and tonight should be a bad night. I'll be at least taking the Ativan in hopes of getting more sleep than I did last time. I actually made it out shopping this morning. I went to get my own latte at 7am and then accompanied Darcy to Northgate Mall to get some slippers. I can't find my old slippers and I wanted new ones for Christmas but we didn't get a chance to go shopping for them with the bad weather. I wasn't having a lot of fun at the mall this morning, but at least I made it out. And maybe the extra walking boosted my energy a little. :)

Radiation -- Finished!

Last session was yesterday. I'm going to kind of miss the techs... they were all very nice and made what could have been an unpleasant experience much less so. I won't miss having a chunk of time taken out of everyday. And the good news is my hip seems much better. Actually the hip doesn't hurt at all. I still have the tweekiness right in the crease of my leg... the thing that made me think it was a ligament thing all along. But all the problems I had walking last week are gone. Maybe it was all the rest I got with all the snow last week.

I also had my pre-chemo appointment today. Blood counts were all good so I'm a go for chemo on Friday. I don't have the latest CA125 though. I'll be curious to see where that is at. I also got a prescription for a couple of sleep aids [Ativan and Ambien] so I will hopefully get more rest in the days immediately following chemo. Hope it helps. They also went ahead and scheduled a session for 1/16/09. She will let me know if the oncologist wants a CT scan before then. I've also got an odd lump on my right temple that I just noticed when my hair fell out. He may want to do a head scan as well to see if they can tell what that is. It has definitely been making me nervous since I noticed it.

We also talked about taking L-glutamine to help with the neuropathy. I've had some numbness in the middle toes on my right foot. I had heard that might help but didn't know how much or how often to take it. The PA said to take it every day. I had been taking it like every third day. She concurred that studies are showing that it actually does help.

I also asked about the discomfort I had been experiencing down my left side. She asked a bunch of questions most of which I answered "no" to so she didn't seem too concerned. What they would be worried about is that I am at a higher risk for a blood clot so she was most concerned about shortness of breath. I feel like I have that but it's moreso that I get a stabbing pain when I breathe deeply so I'm am breathing very shallowly when that starts acting up. It's been bothering me a little the past few days so I am a little worried it's going to much worse with this round of chemo. She also said she had heard from some patients that the area where their tumor is does get achy after chemo so it could be that as well. I'm keeping my fingers crossed that that is not a big issue this time around. I'm going to watch the fluid intake a little more so I'm drinking only a couple liters everyday instead of the 4 I was drinking last time.

Actually, I did make it to radiation

After I posted the previous entry, Darcy got her broken chain fixed. She shoveled out the area at the front of the driveway and got her car manuvered into a spot where she could get the chains on. We took a spin around the neighborhood to make sure they were working properly, had lunch and off we went. Today was supposed to be my last day but after missing Thursday, tomorrow will be the last. I did see the radiation oncologist for the last time. He said the fatigue will continue for another 4 weeks or so and to take it easy for about 10 weeks while the bone heals. No skydiving. :) I actually had been a bit sore again after walking into Columbia City in the snow on Saturday. The nurse suggested I not overdo it. If it's hurting after some activity... don't do that!

I also got pretty tired today. I've been assisting clearing the sidewalks and today noticed I was particularly unable to go for long without getting exhausted. So no more of that.

I went over for my blood draw after finishing with the radiation appointment, but the office was closed. That means I'll have to try to get in tomorrow... if they are open then. We have a little break from the snow until tomorrow night so I hope they are open tomorrow. The roads were pretty bad out there today, but it was above freezing so there was some melt off. It'll just be icy in the morning tomorrow. I wonder if court will delay opening.

I won't make radiation today

We got more snow yesterday and overnight that gives us a total of about a foot of snow. The only vehicles we see moving are those with chains and 4 wheel drives. I tried getting my car out of it's spot and no way. Even Darcy, who managed to get me there after our 8 inches Thursday, was only barely able to get out of the driveway. She was slipping and sliding on the level street. Alaska has not been plowed and I doubt it's even been sanded, but there is so much snow on the street I don't think it would matter.

I was also due for a blood draw today prior to my appointment on Wednesday. There is more snow in the forecast for tomorrow, but hopefully not as much as we have been getting. It is above freezing today, but only barely, and it's not really melting off except where we have shoveled.

My head is getting pretty bald but the pace of the fallout has slowed a little, probably because there is less hair to fall out. :)

Made it to Radiation -- and got a Haircut

I made it to radiation yesterday but not without some drama thrown in. The weather was clear but the streets were still icy, especially the one that runs in front of our house. Darcy agreed to take me because she had chains for her car that she had purchased last spring for a trip to Rainier. The weather had been so bad then she hadn't gone so they were still new in the box.

We decided to leave about 2:00 to give us plenty of time for a 3:45 appointment. Just as we were getting dressed, a big cherry picker truck pulled up blocking our exit to the main road. It was the power company and they had come to trim a neighbor's tree away from the power lines in anticipation of the big wind storm that's expected today. We could not get straight out onto Alaska. We decided to try Oregon which is much steeper. We tried without the chains first... no way. So we put the chains on, but they weren't terribly tight. This time we made it maybe twenty feet up the hill before the wheels started spinning.

We turned around facing down the hill and decided to go down to the next street. We slid a good protion of the way but Darcy managed to maintain a controlled slide and made it onto 33rd. From there, we rechecked the chains. One of the inside cables had gone under the tire so the attachment link was bent and not holding. We took the chains off and decided to give getting up Alaska a try. It was a little dicey but we made it with no real problems because the street had been sanded and the slope isn't as steep. From MLK the rest of the way in was snow covered in spots, but definitely passable. Some hills were completely bare and wet. That's a good indication that if Seattle had the equipment and resources they could clear streets for travel... even the hilly ones. Anyway, we made it in and home safe and sound.

While we were up on First Hill, we decided to get another set of hair clippers. My hair was really coming out today and it's itchy and messy. Darcy cut my hair last night to a little under an inch on top and a little shorter on the sides to even it up. The clippers we got were crap but we got it done. I don't want to go down to skin because last time my hair continued to grow [some of it] and it got really prickly. I wanted to leave enough that it would stay soft. There's a pic below to see my new do. After sleeping with a cap last night to catch the fallout, it's really matted down this morning. And one side has rubbed away in particular. I may just give up on it and go for the shave again.

No Radiation -- No Haircut -- Lots of snow!

The radiation department called this morning to say that streets in the area are treacherous and they planned to close at 1:00pm. If I wanted to try to make it in early, they would stick around. At the time, we had about 4.5" at our house so I decided there was no way I'd get there. I think they were relieved to not have to wait for me.

My hairdresser also called to cancel the haircut. Probably wise, but my hair is really starting to come out now. At least the scalp tenderness is easing up. She offered to reschedule Christmas Eve, but I think that will be too late. Maybe I'll just find a place to walk in for a quick short cut.

In the meantime, I'm enjoying a day at home watching it snow. We were awakened this morning about 5:30 by lightening and thunder. It was snowing like crazy but was supposed to ease up mid-morning. Instead it has continued snowing fairly heavily all day long and is supposed to continue for another 6 hours. Courts opened 2 hours late, but shouldn't have opened at all as far as I'm concerned. Now they are closing at 2:30. Ridiculous. I had to take a vacation day to stay home but there is no way I was going to get there and find myself having to walk. I am physically incapable of walking any distance, especially on snowy streets. We've got close to 6" here now.

Here's some pics to enjoy. This is easily the most snow we've had since we bought this house 5 years ago.

Hair today - gone tomorrow

My scalp has been a bit sore the last couple days and got worse last night. I know that means the hair the will start falling out soon. In fact, if I run my fingers through my hair on the right side I'll come away with 4 or 5 hairs each time. The pace should pick up by tomorrow so fortunately I have a haircut scheduled for tomorrow evening. Hopefully the snow doesn't keep that from happening. So far Seattle itself has been spared the snow falling all around us.

I saw the radiation doc yesterday and he did give me a disabled parking permit application so I can go get that going. He said that the effects of radiation continue for at least a couple months in terms of the tumor dying off and getting absorbed by the body. He made the permit for 4 months since it can take that long. He will also make a referral for physical therapy to see if that helps me walk better.

I got extremely tired last night again. In fact, I went to bed at 7:30 because I actually felt sick. I was chilled and felt feverish. I woke up a couple times, but again, had no trouble sleeping until 5:30am even though I had been in bed for 10 hours. This is making life a little difficult since I am at work from 7:30am until 6-6:30pm. Then I eat dinner and go to bed. Doesn't leave any time for anything else. I'm hoping things will improve once I don't have to fit radiation into the middle of the day.

Radiation Fatigue?

I've been feeling pretty good except for tightness in my groin that has made walking difficult. In fact, I hadn't even been taking much ibuprofen. But yesterday evening my groin started hurting again (I had been copying a couple of files and making alot of sideways weight shifting) By the time I got home around 6:30pm I was really tired. I ate dinner, watched TV for an hour and could not keep my eyes open. It was beyond sleepy -- more like shaky tired. I went to bed and slept for 9(!) hours. I woke up a couple times briefly, but only long enough to visit the bathroom, take more ibuprofen, and right back to bed, as tired as I was when I went to bed. I finally got up after the 9 hours, but I feel like I could sleep some more. At least it's not like I have to sleep. More like I wish I could just stay in bed all day. (I might get my chance tomorrow since more snow is in the forecast for tonight) I see the radiation doc this afternoon so I'll ask him about it. I have been working long hours since the middle of the day is interrupted with radiation. At least that will change next week

A Good Night's Sleep

It's amazing what a difference sleeping well can do for your energy and well being. Thursday night I managed to wake just once and when the alarm went off I could have stayed in bed. Then last night I slept for almost 6 hours without waking. Heaven! I got up for a little while as I usually do because my back gets achy after 6 hours in bed. And when I did get back to bed I could have slept longer still but it was 7:30 already and we need to get some errands done before the expected snow fly this afternoon.

I feel pretty good this morning. :) Makes me feel much more positive about dealing with this while I continue to work. My hip is really stiff, though. It's not so much "pain" as it is just having to work to lift my left leg forward. Might need some physical therapy once radiation is over. I've been using the cane more and more.

I found out yesterday that my oncologist won't be there for my appointment on the 24th. That's a bummer because I wanted to hear his reason for not doing surgery. I also had another little heart attack when when I saw the office had called. But I'm due for a blood test on Monday so I then thought it must just be a reminder. I dreamt last night that they called to tell me that they found something in my lungs and wanted to scan them as well. I must be getting anxious about what I'll hear on the 24th already

Halfway through radiation

Number 8 was done today -- 8 more to go. I felt well enough to go to work today and even stayed the entire day. I got tuckered out a few times and wished I could go home, but I hung in there and didn't get home until 6pm. Not bad for having been incapable of working at all yesterday. Guess it was residual chemo effect and not the radiation that kicked my butt yesterday. That's good news for being able to continue to work for a while yet. I also had to go back to my primary care doc for more antibiotics. The UTI came back 5 days after I finished my last dose of antibiotics. She gave me something stronger this time so hopefully that will take care of it. It might set off other problems on top of the radiation [ie-gut issues] but I can't be having an infection particularly when my immune system will be crashing soon.

Didn't make it to work afterall

I woke up with kindof an upset tummy this morning and feeling a little worse again. I went ahead and got dressed and even drove into town, but I stopped in to visit a friend who works near where I'll be working and thought I would wait and see if I perked up any more. The tummy problem got a little better but I still was out of it so I called in sick. I would say I'm definitely feeling better from the chemo, but I am just exhausted today so I'm wondering if the radiation fatigue is setting in. If that's what it is, I think I can forget about trying to work. I have NO energy. I see the radiation oncologist today and I see if that might be what's up. And we'll see what tomorrow brings in terms of energy level. I might just give it another shot tomorrow.

Feeling better

I actually felt better yesterday (day 5) but not as good as I had been hoping. I was thinking that this must be harder on me this time, but looking back, I think I would usually feel bad the better part of a week. So even though I would go back to work on day 5 or 6 last time, I still felt pretty bad. I couldn't have worked yesterday, though. It was all I could do to go to radiation.

The side achiness is improving as well. I wonder if it might be ascetis -- a fluid collection in the abdomen that is pretty common with cancers in the abdominal area. I was trying to drink alot of water -- more than I should have -- and I noticed Sunday night that if I ate or drank very little I would feel like I was going to burst... and the pain would increase. Guess I'll have to ask the doctor about that. It might not have been ascetis either, because its gotten better and I think the only thing that improves that is to have the fluid drained by a doctor -- with a needle. (Yikes!)

Ugh

I feel prety crappy today. Last night was pretty ugly, too, though I did get some sleep. I would sleep for 45 minutes, wake up and have to go to the bathroom, then sleep another 45 minutes, the entire night. My knees and ankles are pretty achy, too. What is different this time, and I don't remember this from last time, most of my left side is hurting. I'm assuming that it's the tumors, which are on the left side, reacting to the chemo. Hopefully that means the chemo is having the right effect. And hopefully I'll be feeling a little better by this evening, and the aching side won't persist.

I'm sick of drinking water (which now tastes disgusting) and taking pills. Just gotta get through the next 12 hours or so...

Chemo Day #3

I had a pretty good day yesterday... just jittery and the usual day 2 chemo flush. I worked pretty much all day. I started winding down to where I was getting pretty tired around 2, but still felt alright into the evening. After dinner I got really spacy and finally went to bed around 9pm. I slept for a few hours but around 2am I found myself just laying in bed wide awake so I got up and puttered around for a few hours before I got sleepy again. Managed to get another 3 hours or so of sleep before waking up again at 7:30. I'm not feeling real well this morning, but don't feel too bad either. No nausea, which is a good thing. Really just shaky fatigued. Today will be a take it easy and pamper myself day. I expect to feel worse tonight and tomorrow before things should improve on Monday.

Chemo #1 - check Radiation #4 - check

Had my first chemo today. My appointment was for 8:30 but it was well after 9 before we got started. They initially led me to a chair in the big room but mentioned they had one private room left so I jumped on it. When you're there for 6 -7 hours it's nice to have a room to yourself. This room even had a bed in it so I was able to really relax. I think I prefer the lounger, though. The Powerport worked really well and when we were done the nurse said I could now leave it unbandaged and shower without covering it.

Darcy hung out with me all day and went to get lunch at noon. Then another friend dropped by later to keep us company. I brought work with me to try to finish getting things transferred at work but the morning meds they gave me [including Zofran, Ativan and Benadryl) made me pretty sleepy. I had company in the afternoon and I didn't want to ignore her so I didn't get anything done. I finished chemo about 2:40 and went down to the first floor where radiation is just to see if they had an opening. Lucky day! They were available right then so I got dressed and went right in. We were out of there before 3!

I'm feeling pretty good right now. I think the steroids have probably helped with the groin/leg pain so that's not bugging me at all this evening. I'm tired but feeling pretty good physically. I should start feeling pretty crappy by Saturday.

I did notice this afternoon that the skin at the top of my leg was feeling irritated. I asked the guys at radiation if they could show me the exact area they are zapping. I'm supposed to put aloe vera on the treated skin and I hadn't been doing the leg. They showed me a photo of the field and I was surprised at how far down the leg it goes. No more bikini line issues on the left side! (as if you'd ever catch me in a bikini!)

The Night Before Chemo

Aahhh... the anticipation -- the drugs...

I picked up my meds, including a strong anti-nausea med, this afternoon. I start the "pre-chemo" steroids tonight. I forget how they make me feel, but they warned of mood changes and problems sleeping. I don't recall those being a problem last time, but we'll see. I'm pretty nervous about what this first round will be like. I'm bringing some work and some fun stuff to do this time. Last time I didn't have an iPod or a Nintendo DS, let alone an iPhone, so I should have no problem keeping myself occupied.

Radiation is going well. I have definitely noticed an increase in "discomfort" when I walk. No real problems in general but the leg is really tight and feels like it does when it would get bad... like lifting the leg and putting it forward when I step hurts. A friend loaned me a cane to see if it would help. I've never used a cane and it took me a while to figure out how to use it. It actually did help when I had to walk some distance so I may actually start carrying it around. I don't really need it, but it does make it easier to keep going at times.

Radiation -- One Down, 16 to go

I went in for my first radiation treatment this afternoon. They give us a parking pass for 30 minutes and my first clue that it would take longer than usual was that all the spots were taken. I had to wait about 25 minutes for my session, but things went smoothly from there. In fact, it went faster than any of my other appointments. No pain, but I swear I am feeling some "heat" in the area. Maybe that's psychological. :) I wonder when the real side effects will kick in. Probably right after I am recovering from Round 1 of chemo.

No Surgery

I have mixed emotions about that decision. I'm happy to not be going through the surgery and a lengthy recovery while doing additional treatment, but I wonder what that means about what they think is really going on. I guess it was a tough decision for the oncologist so he wanted to think about it more over the weekend. So radiation will go forward today and chemo will begin on Thursday. They wanted to know if I wanted to do the second on Dec 24th or Dec 26th. I opted for the 26th in hopes that I might feel a little better on Christmas Eve and Christams Day.

I was also a little surprised to learn that they only have 2 chemos planned for now. I had heard from others that it's typical to do 2 and then scan again to see if it's having any effect. If not, then they'd try something else. That does make me nervous, though. *sigh*