Getting some chemo

I'm sitting here on COHA Columbia getting my chemo started. My first drip was IV Lorazepam (Ativan) and benadryl. Holly's neurotic old cat Spooky was on Lorazepam, which I find humorous. It makes you sleepy and generally affects your mood. It also has antiemetic properties. It will probably take my mind off of what's going on and eventually make me go to sleep, which is great.

Also I remembered a word which was obviously escaping me in the last post: barber.

My fancy little netbook (thanks guys for chipping in and buying me a new toy!) has a webcam where I have taken a picture right before the drips started.


I still look pretty happy there! I am definitely getting loopy fast though. Feels like the world is slowing down a bit around me. Like if I look around quickly it seems like my visual sense can't quite keep up, there's a sort of 3 dimensional echo, like my eyes aren't communicating at the proper rate to my brain. Hopefully the treatment goes well. I'm still just getting all the drugs to get me ready for the "real ones" at the moment.

I like all of the nurses that I have encountered so far. They are all very good. I'm pleased with my overall care as well. I know my mom thinks I'm getting terrible care for whatever reason, but it's not true. Dr. Somerville was a good surgeon. I didn't have any surgical related mishaps on either side. He has different priorities though and I can respect that. He cuts people. Blood is for someone else. Dr. Kasamon has been extremely excellent. All of my appointments with him last twice as long as they are supposed to and throw off all of his schedules. He'll talk with me as long as I like about all the various factors going into his decisions and my health. Often when one has a repeating doctor visit you sort of begin to dread it because it's the same questions every time and it takes 5 minutes and you just wasted half your day for the appointment. I certainly come out with a substantial plate of knowledge to chew on generally from him.

A new 'do!

I had a big haircut today. I had a very friendly Vietnamese (I think) hair cutter person. They were very interested why I wanted to not only have my hair cut and donated but why I further wanted it shaved off. I was trying to avoid getting into a discussion about having cancer but it was pretty unavoidable. Turns out the hair cutter person, her son died of colon cancer at 38 (which is very young still for colon cancer) and her husband died of a heart attack. She has bad luck like me. I was afraid she was going to cry or something; it's probably not common she talks about stuff like that with her hair cutees.

We had a very good weekend. On Saturday we went to the Baltimore hamfest and Emily was able to witness a truly crazy nerd event. It was very large, much much bigger than the Gainesville one. There was a tremendous amount of total junk available and a handful of booths with new neat stuff. I doubt I'll go back again, but it was a good experience nonetheless. Then we drove up to Hunt Valley and ate brunch at a completely packed Panera. Then we drove back down to Timonium and went to Lowe's. I wanted to find some household organization stuff and I wanted to pick out some stone/brick to do edging around the front of our house with. Emily did not like any of the brick so that's unfortunate. We'll have to find some somewhere else to get some acceptable rocks. Didn't find anything I really liked for organization either. It was a totally fruitless trip. To try to make things better we went farther east to Ikea in White Marsh. That didn't go very well at all (at least initially). We went through the whole showroom part of the place and didn't find anything that was the right size or right look that we totally liked. In the end we still managed to spent $250 though. I found something in the warehouse that I didn't notice in the showroom that was good for one of the spots I wanted some shelves. We bought another thing to organize our shoes and other stuff. It's unfinished pine, so we went to Lowe's today and bought some stain. Hopefully soon (next weekend I guess) we'll be able to stain it and get it put together and serving it's purpose. I've never stained anything so I am kind of excited about it.

We spent quite a bit of time this weekend organizing the house and cleaning things. We've bought all sorts of home organization products and are slowly putting them to work. We have also plotted out some spots to place a bunch of the pictures we have not yet hung. I've gotten over my aversion to putting holes in the wall. I don't care, I'm going to be here for a while and I may as well put holes wherever I want. I also have decided to look into basic woodworking. We still have some random nooks and crannies that we want "something" in (a table, some shelves). We'll never find anything to fit that is to our liking. I may as well make something that looks decent. How hard could it be?!? I checked out 3 books on woodworking from the library today. Maybe I'll be able to muster the energy to read them while I'm toasted in bed from chemo. Our house is finally starting to come together, after more than a year. We're getting the boxes off the floor and unpacked (well, the stuff in boxes usually just ends up in storage bins and shelves, but whatever).

Emily is not going to post anything tomorrow regarding my chemo unless something really bad happens. I probably won't post anything either if the previous two rounds are any indication of how I'll be feeling. If you hear nothing, you can safely assume I feel pretty shitty and extremely tired. ;)

Now, for some pictures:

This was taken before our "hike" around the park last week. It was cold out.


This is the new beanie that Emily made for me. It feels awesome. I think it's cashmere. This picture was taken today. Notice the shorter beard. (The hair cutter lady was very anxious to trim it up; I'm glad she did, it looked even more ridiculously long with no hair!)


No hair!


This is a picture of my room as of today. For those of you who have seen it before, you will likely notice a marked improvement in aesthetics. For those who haven't seen it, trust me... it's a lot better.


Another shot of room organization.


And lastly: a shot of me sitting at my computer desk in my new organized room.

I'm still around.

It's been a week since my last post. Several times this week I have thought that I should write something but just never got around to it.

It has been a largely normal week. I worked a decent amount, including my first full 8 hour day in god knows how long. I had a couple of doctor's appointments and those went just fine too. I had a little stitch that poked through my skin around the port which I had to see Dr. Somerville about. I guess it was supposed to dissolve but because of its orientation it didn't. Anyway it only took him about 45 seconds to yank it out or do whatever it was he did (I couldn't see him while he was doing it).

My third round of chemotherapy is on Monday. It will be a blast, I'm sure. I think my hair is actually starting to come out now. I want to go somewhere and have them cut it and donate it to Locks of Life or whatever that charity is called, but will I actually take the time to do it? Who knows. I better do it soon though! I always said I wasn't attached to it (my hair), but truth be told now that I have to get rid of it I think I am more attached than I thought. I guess I've had it for nearly 4 years now and haven't had it cut.

Anyway it's supposed to be a crappy weekend, really rainy. I wanted to do some work outside but that's not going to happen. Maybe we'll make a trtip to Lowe's anyway and buy some stuff. The Baltimore Hamfest is this weekend too and I think we are going to go as soon as I finish writing this and take a shower. Hopefully it will be mildly entertaining.

So anyway, not too much to say. It was a normal week which is a good thing in my book.

Photos from Florida

Darla!

Want to share that muffin?

The cannon

Hi everybody!

This week wasn't too bad considering it was a chemo week. I felt pretty good by Wednesday actually. I had an appointment with Dr. Fenig (urologist) regarding the stent. He might be changing it out in May but is going to coordinate it with Dr. Kasamon. Later that day I did a little yard work. Then I realized I overdid it and was totally wiped out. I did manage to get into work for 4 hours on Thursday and 5 on Friday and felt better as each day went on.

Emily and I went out and did a bunch of stuff today. We bought a Tucker-proof trash can (has a lid) so that he can't knock it over every night and shred all of its contents over the floor. Then we went to AAA and finally picked up a bunch of maps for the surrounding area. Now hopefully when we find ourselves in some strange area around Baltimore we can actually find a way out. Then we went to REI. It wasn't a terribly eventful trip, didn't find anything spectacular. I did buy a new bike helmet though. Hopefully someday I'll be able to use it again. Then we went to Cromwell Valley Park which we had never been to before. It was alright, but it's still basically winter here and there were no leaves. I like Patapsco more. I have not felt very good all day nonetheless. I hoping going out and doing stuff would change that, but it didn't. So now I'm just resting.

I see everyone (well, at least everyone I know from Florida!) is very encouraging in my homesick thoughts of moving back. Emily and I will certainly be up here for another few years I would imagine. We both feel silly in wanting to move back to Florida, just because it's familiar to us. It seems like you ought to be able to move somewhere and have a new life too. We've found lots of neat places in Maryland that we like too, which we'd probably miss if we moved away. I'm certainly no fan of cold weather though. If I ever move anywhere else, it's not going to be any colder than Maryland that's for sure. I personally enjoy my job a lot as well and am pretty sure I wouldn't get the same sort of job satisfaction doing something else. But then again there is more to life than that! Seeing as how my entire extended family, sans father-in-law (who we still have to go visit in Kentucky), lives in Florida though.... that's very nice. It seems especially so when you're sick and laying in bed at home after having come back from there. I suppose Emily and I are still pretty young so there's plenty of time for us to make more life-altering decisions. Plus our house has to gain quite a bit in value again before we could abandon it anyway ;) Damned economy! Anyway, those are my thoughts on moving. I appreciate all of the encouragement to move back, but I think we'll have to settle for visits for now. Hopefully more often than once a year and not only when something bad happens.

Day #2

I haven't really gotten out of bed yet at all today. I probably ought to get moving around, it'll probably be good for me. I sure don't feel like doing it though!

I don't feel too bad. My stomach is less than happy with me and I feel very tired. This is about what it felt like in the past, I think. This time went better than the first time. I still became very nauseous feeling but received about 3 different drugs for it. The last one, Adavan, I think helped the most.

I very much enjoyed our overly short trip back to Florida. I really would like to take a whole week off this summer and visit Emily's family and get everyone together for a bash. I hope Emily can get the time off work (she's taken quite a bit of time to be with me so far!). I think I can get it. I sure miss Florida now though. Maybe it's just a temporary urge, but I really want to move back somewhere closer to home and all of my family where it is warm and the roads are nice for biking. *sigh* We were able to enjoy the grandeur of Publix once again and partake in Publix subs while catching up with Chelsea and Steve (who went camping in Key West, I want to go next time!). We ate a whole lot of food at Leonardo's By The Slice with Steven. I was also finally able to introduce Emily to Hogan's Heros subs, which I believe are probably the best subs I've ever had anywhere. We didn't make it to Backyard BBQ in Newberry (completely forgot, not that we had any room for it!) and I still have yet to eat at Satchel's pizza. Another visit must be in order!

We took some good pictures, but Emily has them all and I don't have the patience to put them in here. Maybe she'll do it for me sometime!

2 down, 10 to go!

Hi all! Ryan's asleep in bed, so I'm taking it upon myself to update the blog to let you all know that chemo #2 is finished. I'm sure Ryan will go into futher detail, but today's treatment was not as bad as last time. Still nowhere near comfortable, but a little better since he wasn't constipated. Treatment today was at the Tate Cancer Center. (Dr. Kasamon operates out of both Tate and the Columbia center.) The treatment chairs are a little more private than at the Columbia location, but in all other respects it's about the same. The nurses at both locations are exceptional. (Maybe that's the norm for oncology nurses?)

I very much enjoyed meeting all of you that I hadn't already met, and seeing again everyone I already knew. Thanks for making me feel welcome!

We're back

Our flight was delayed more than two hours but it did eventually arrive and we are safely home and in bed. Time for some sleep. I have to get up at the ungodly early hour of 8:00AM so I can make it to chemo by 9:30!

I need to remember to check flight status before leaving the house from now on.

Nighty night!

Want to know what a stent looks like?

It's big.

Today was a good day

I had a miraculous good night of sleep last night. I woke up this morning and wasn't in that much discomfort. My GU pain appears to have mostly dissipated as well.

Dr. Kasamon got the results from my last "UTI" urine bacteria culture. It turns out there wasn't much bacteria at all, suggesting I didn't actually have a UTI. Just some other sort of "inflammation". Since my symptoms have mostly gone away today, maybe this is just some sort of periodic extremely annoying thing I'm going to have to deal with. In any case it seems unlikely that antibiotics would have helped anyway (other than placebo effect). I went by Kasamon's office and they took some blood to see how I was doing after my first week of chemo and they also took a urine sample to check it out as well. I ended up not seeing Dr. Somerville since the issues there seem largely resolved. I have an office appointment with the urologist who put my stent in, Dr. Fenig, next Wednesday. I'm going to have to make a habit of keeping up with him I think so that this stent thing gets worked out.

After the visit to Kasamon's office I went to work for about 5 hours.

Before the sun set Emily and I went back to the park and unloaded another old loaf of bread on the ducks and geese.

All together it was a pretty eventful day. I am finally tired now though. Lots of walking and doing stuff. I hope I didn't overdo it! Emily is out driving to put a light blanket on her horse right now. I can't wait until Addy finds a new home. It is absolutely ridiculous the complete lack of care her horse receives for the money we're paying. I'd rather pay twice as much (we might end up doing just that!) for her to be cared for properly.

Sunday

I've decided to wait until Monday to address my GU issue. Dr. Kasamon rightly suggested that it would be good to have a urinalysis prior to starting antibiotics again, just to be sure what ground state was. Since I am going to his office tomorrow anyway for blood work, I believe he's also going to have a urine sample and I think he is going to give me a prescription for cipro to relieve the symptoms. I explained that this was a tricky week because I am planning on going to Florida so hopefully it all works out. I am cautiously optimistic that my travel plans will not be derailed.

I'm not sleeping very well at all lately. Hard to explain why. Obviously I just don't feel well. I have been trying not to take the 20mg Oxycontin anymore, which could have something to do with it as well. I have been taking the immediate release capsules in 5mg doses (including through the day now) so I'm not sure my goal of not using narcotics is really having any effect. I don't think there's a reason for it, but the immediate release stuff, when I take it right before bedtime, gives me crazy dreams (well, it gives me dreams at all... which I don't like because normally I don't seem to dream and I'm used to that). That didn't happen with the Oxycontin I think.

Emily and I just got back from a lengthy walk (about 1.6 miles according to Google) which is easily the most exercise I've had in a while. We brought some stale bread and fed some cute ducks and some bossy geese. It was fun. This is probably the nicest or second nicest day we've had here in the last 5 months or so. If it were sunnier (it's been overcast) it would certainly be the best. Yesterday was very nice too.

I need to actually get to work this week for at least a day. I certainly wasn't "planning" to take all of last week off. I have to get in and submit some paperwork for what is essentially disability leave, since I'm going to need it a bit earlier than I had hoped. I think by the end of this week I'll have spent all of my sick and vacation time. Sucks. Oh well, getting sucks too I suppose. I'm just glad my employer is so extremely flexible and accommodating to those with problems like mine.

Also in a completely unrelated note I never got any email or snail mail from REI regarding my dividend money from last year, which should be a fairly substantial amount I think. I need to call and see if there has been some snafu and get that sorted out. I need to spend more money on outdoors stuff that I can look at expectantly!

I'm very tired right now. Maybe I'll try to eat something, maybe watch some mindless TV (Top Gear! ... by the way Mom, Top Gear S12E01 means the 12th season episode 1 of Top Gear, a show about cars that airs on BBC2 in the UK -- we download it and watch it, the presenters and content are highly entertaining). I've also had watching all of Babylon 5 on my hitlist for quite some time. I own the first season on DVD and have never watched all of it! Maybe now I'll have enough time and lack of desire to do anything else to veg out for that long of time.

Status of my GI & GU tracts

So I saw Dr. Somerville on Friday morning (after we drove to the wrong office first because of some miscommunication). He prodded some stuff up my backside and pronounced that he couldn't see anything immediately wrong. He gave me a prescription to have some x-rays of my abdomen and to come see him again on Monday. Well that really wouldn't do because I wasn't sure I was going to make it through the weekend and Emily was equally unnerved. We went home and I passed out asleep again until very late in the afternoon. Finally I got up and we went to Patient First and I explained the whole situation again to the doctor there. We went there because they can do x-rays and will actually look at it right away and tell you something. Basically I wanted to know if I needed to be in the ER or if this was really something that could be solved with OTC/prescription stuff. Well it turns out I'm not really "all that backed up". The doctor was very emphatic (more so than any other doctor I've talked to about this) that I need to be taking an OTC laxative and stool softener daily when using any narcotics (e.g. oxycodone). I was/am aware that narcotics have a constipative effect but no one has ever been that emphatic about the need for laxatives in combination with them. In any case, he gave me a prescription for golytely (which is the 4L of junk they give you to guzzle for a colonoscopy) but said I could take it at my leisure. This stuff is just poly-ethylene glycol, which is also available OTC as Mira-Lax (which I have). I haven't filled this prescription yet. I did take senna when we got home. I had a fairly satisfactory (if extremely ill-formed, so to speak) bowel movement today, which was great in my book. I'm not sure if I'll switch to Mira-lax and continue with senna. I think I'll stick with senna tonight.

Now the only problem is that I am highly suspect that I have (another) urinary tract infection of some sort. Same sort of groinal area pain that led up to me being sure something was wrong last time. I am getting good at spotting these things so I will be amazed if I am wrong. This whole stent thing is actually a pretty abortive medical situation in my opinion. It was put it about 2 hours after I had a CAT scan showing that I needed one and I was totally out of it when I agreed to it (I would have agreed to it anyway though). But I have never really had any consultation with anyone about it, it's just sort of sitting there keeping things open and attracting bacteria. I never did get word from Dr. Kasamon on what sort of coordination I should be having with Dr. Fenig (who placed the stent) and him, if any. If I don't feel better tomorrow, it's back to Patient First for a pee test and likely more antibiotics. I wrote Dr. Kasamon an email and asked if I should be on prophylaxis antibiotics given the stent and the chemotherapy. I want and feel that the answer should be yes. He will sometimes respond to my emails over the weekend, and I hope he does and he can just call in some antibiotic that I can take and increase the chances for developing antibiotic resistant bacteria on the world by using it for a really long time.

I actually went out with Emily today to look at a farm, and then we went to the Columbia mall and did a wee bit of shopping. Then we ate at Chik-fil-A. I've had a fair bit of food today, so that's good. I did not want to get up this morning. I think that happens when you essentially spend an entire week in bed. But I'm glad I got up. I am very tired right now. Who knows why. Maybe because I got up and did something today. I think it's a UTI. We'll see.

A quick update

I talked to Dr. Kasamon who basically deferred to Dr. Somerville on the specifics of this matter. Dr. Somerville called me back about an hour after that. I explained the situation to him (I haven't spoken with him since he put my port in). He didn't sound terribly worried or concerned, but then again he never does so that is no indication of anything. I'm going to see him at his office tomorrow morning where I presume he will poke and prod me and make some decisions.

I probably won't be getting in to work tomorrow (in case any of my coworkers are reading this!).

Hopefully whatever is going on requires me to take some pills or do something simple. We'll see.

Unfortunately it's not good news

Things are not good with my bowels. I think there is a blockage somewhere in my GI tract. Last Thursday I resorted to quite an array of oral laxatives to try and "get things moving" after about 5 or 6 days without a bowel movement. It eventually succeeded. Then another 6 days went by until last night rolled around without a bowel movement again. Oral laxatives did not do the trick this time. So we resorted to an enema, which had some effect but not what you would expect for 6 days without a poo. I have been pretty miserable from this because it makes me very not hungry, sick to my stomach, and sometimes creates this pain down in my abdomen. Emily and very worried. She and I are going to get into a fight or something over this I think. I know she is very worried about me and she thinks I'm being stubborn. I don't want to go to the ER, but she thinks I should have gone last night I think. I am waiting for Dr. Kasamon and Dr. Somerville to return phone calls that I placed to them. I am hoping Dr. Somerville (who I imagine will be the final word in this) has some ideas to try and get things moving "naturally" because surgical unimpaction is the next option I think, and I really don't want any more surgery. Furthermore I hope this gets resolved before next week because Emily and I have non-refundable tickets to Florida. *sigh*

I don't know if it's trailing effects from the chemo or just my general unhappiness over things, but I have been sleeping like crazy. I didn't go to work today and have basically slept all day. I hope to go tomorrow but I really don't want to if my stomach is messed up. Yesterday I had a fig bar and some granola, and today I've had a bagel with some cheese, an apricot, and a banana. I hope to have some soup for dinner.

I just wish I could sit on the toilet and poop like a normal person. I think that would make me a happy person.

I also want to toss out that I'm very happy to have Emily with me up here. She really cares about me and feels helpless seeing me in the state I am (I'm helpless too!). I love her and hopefully we can go out and do something fun in the near future.

Pump is almost empty

I am waiting around for my pump to empty out. It has a couple of hours left. After I have it removed I'm coming home and taking a shower which I think I will very much enjoy.

The irinotecan that I had on Monday I think was by far the worst of the drugs so far. The 5-FU which I've been getting over the last 48 hours doesn't seem to be doing too much to me yet other than perhaps making me tired. My biggest complaint is that my stomach is weird, which is a complaint that I have had for quite some time. I think my bowels are still not normal. I imagine it is hard for them to get normal when I'm constantly taking pills that either cause constipation or diarrhea and vice-versa. Right now I think things are bound up and I need to get that fixed. It's odd because these chemotherapy drugs, the most serious side effect is supposed to be the possibility of very bad diarrhea which is exactly the opposite of what I'm experiencing I think.

I'm certainly not going to work today, I'm not sure about tomorrow. I don't want to let this knock me down too much... but we'll just have to see. If I can get my stomach and assorted other pains under control I think I'll feel pretty normal.

I thought that my FSA was set up so that they automatically figured out when I had eligible expenses from my insurance and would automatically reimburse me. Turns out that was not the case and I have to go submit like 25 pages of insurance "explanation of benefits" to get reimbursed for all the stuff since the beginning of the year. Oh well, it will certainly be worth it! I also took care of dealing with a few annoying insurance/bill related issues today. I've decided dental insurance is basically useless. I will certainly not be paying for it again next year. I'd rather just bear the full cost and use the money from my FSA to cover things. I didn't realize that my normal health insurance actually covers some minimal dental work (some xrays and cleaning) which is nice. It also makes my supplemental dental insurance a lot more expensive that it should be in my mind, so I won't be paying for it next year!

First day of chemo

Today was the first day of chemotherapy for me. It didn't go so great. I don't know what exactly it was, but it sure seemed worse than all the therapy I had had before. Maybe just because it is the first day and it's been a while since I've felt this way. I am feeling better now than I did earlier. I've been sleeping since I got home basically.

On other news, my coworkers have all been great to me. I know many of the people who read this are my relatives in Florida. I'm sure they would all love for me to be back there for all of this but sadly that is not the reality of things. I don't really have any friends in Maryland, so to speak (and neither does Emily) so it does make things more difficult. My coworkers have been wonderful throughout this though and would consider them to be my closest network of friends up here. They came to visit me when I was in the hospital and that was very nice. They got Emily and I dinners when the surgery rolled around to make things easier. They have all been very eager to help in any way possible. Well yesterday Todd me by my house and gave me a present which was purchased from a pool of money they raised. They bought me a "netbook" which is essentially a smaller and lightweight version of a laptop so that I can use it while in bed or at the hospital or whatever. It's a very generous gift and I wasn't expecting it (though there was some vague talk about it while I was in the hospital, I certainly didn't think I would be getting a brand new laptop ever!) I am typing this post on the netbook now. My only complaint is that they have put the right shift key in a stupid stop and I am continually hitting the up arrow instead which is becoming extremely annoying. I am sure I will get used to it eventually. But anyway they have been great and if any of them are reading this I just want to say thank you for all your positive thoughts and actions!

Chemo starts soon

So it's been a while since I last wrote something in here. The grapevine tells me that everyone is all antsy in their pantsy to see something. Hopefully I continue to have the drive to write in here. My primary concern in starting it was that I would lose interest sooner rather than later and everybody would be all bummed out.

There hasn't been a whole lot to tell. This week was pretty good on the whole. My stomach has been acting up now and again though for some reason. I felt pretty poor Tuesday night I think it was and didn't go to work at all on Wednesday. I did actually work my first full 8-hour day on Friday in more than a couple of months (or at least it feels like it's been that long). I was tired for a little bit in the middle of the day but got a second wind and felt fine. I was pretty good at home too, but then for some reason my stomach acted up again.

Saturday morning-ish Emily and I went out to Glenelg to look at another prospective farm. I think Addy would receive better care there now (as opposed to the no care she receives at the moment). It's not very geographically desirable in my mind though and I think it would come out being a fair bit of money. No indoor arenas and the one ring they have isn't completely level, which I am told is not good. After we got back from that farm we had some food and I got really tired and passed out, from about 1:00-4:00PM. I woke up (actually I think Emily roused me) just in time to get ready to leave for an evening engagement we had with some friends. That was very entertaining as well, but we didn't get home until about 10:00PM, which is super late for me! I was very tired. Stomach didn't feel well again, but it calmed down eventually and I got some sleep.

I have slept for most of the day thus far as well. Emily is out right now looking at another farm for Addy that will also likely be unsuitable. I plan to do essentially nothing today.

Tomorrow is my first day of chemotherapy. I need to write down a big list of questions and other things I need to talk to my oncologist about and hopefully I see him tomorrow (strictly speaking he doesn't have to see me for the infusions). I am looking forward to it. Hopefully some of my annoying symptoms (e.g. chronic pain) begin to dissipate. Of course, I'm likely to experience "clinically significant diarrhea" which won't be a lot of fun. Perhaps it will be better than being constipated though?! Anyway I think on the whole it will be good.