Feelings, as my brother asked

I feel like my doc is just using me as a test subject.  I don't think I'm benefiting from the trial.  This week was a break from treatment and I've been feeling...tired.  Every morning I have a nose bleed, and not just some red in the tissue paper, a pretty bad bleed that takes about 10 minutes to get under control.  I was using some hemeostatic strips that I bought, but today I used Afrin which seemed to help.  I've had constant mild pain which amounts to discomfort, I can manage that with tylenol.  At night, I sweat through the sheets and wake up about midnight or 1, then go down and sleep in a sleeping bag so I don't freeze in my own sweat.  I sweat less then, but still eventually wake up sweaty.  I, in general, have trouble keeping warm through out the day and even with the thermostat at 70, I'm shivering.  Appetite is way down, mostly because I think this big tumor in my belly is pushing on everything.

All this crap makes me feel like things are urgent, but the state of oncology seems to be 'we'll see'.

I can't decide if I should continue the trial or not?  I found a clinic in Wisconsin that administers Coley's Toxins and I definitely want to give that a try at some point, next I guess.

Anyway, shoot, I'm sorry this all sounds so bad, I'm just so frustrated and conflicted about what to do.  Other than that I'm feeling ok.  I mean, I make it to work and do my job if that's any measure of how I'm feeling.

St. Patricks Day

I hate to miss corned beef and cabbage, so made sure to do that.  Nothing remarkable about my condition, had a small nose bleed...

Oh, I should mention that lately I've been finding it hard to keep warm.  I attribute it to the weird spring weather here, and the treatment.  Also, I've noticed alopecia is beginning to start for me...my hair is now pluckable!!!

Rest day

Yeah, right.  I slept in a bit, but was up at a decent hour and had a nice breakfast at one of the best places in town.  It was nice, but I really would have liked to get more sleep...the rest of the day was pretty lax though.

Another nose bleed

I keep getting nose bleeds and I'm managing them ok, but they are still a nuisance.  The nurse practitioner advised that I could try Afrid to constrict the blood vessels.  I haven't tried that yet, but I bought some hemeostatic nose strips which work ok...  Dr. suggests cauterization...

Made it last night

Pretty exhausted after that last round, hope to get some rest this weekend.  We got in late, and I ended up over sleeping and made for only a half day to work.  Didn't feel as great after this last infusion as I did last time...  must be catching up to me.  At least I get a break next week.

CT results

CT results were pretty inconclusive in some cases and ridiculous in others.  Dr. interpreted results as stabilization which I question.  Consider if you will, the fact that this large "superficial" tumor in my abdomen now has a ring in it of what my Dr. believes is more compact tumor, surrounded by the less dense tumor.  Dr. believes the less dense tumor is necrotized, but has no explanation for the dense "core".  From the image I saw, you might compare it to an avocado in structure; a clearly defined center surrounded by well defined tissue.

To me that screams no response, but I opted to at least get through the trial.  After looking at the CT, went up to infusion and was able to get started on that pretty quick.  I got both drugs today so the infusion took about 4 hours from start to finish...  They gave me benedryl again and I was out.  Need to remember to ask for Claratin if I want to stay awake.

Worst nose bleed yet

Woke up with a nose bleed.  I have been frustrated because my nose is completely filled with dried blood and I don't want to blow it because that will probably cause a nose bleed.  I said to myself "heck with it," and blew my nose since I already had started to bleed.  Well, that was about bloody murder and took about 45 minutes before I was able to get it under control.  That said, I wasn't completely practicing effective nose bleed control methods.  I ended up getting a bit sick from the amount of blood I ended up swallowing.

When I got to the doctor, nose bleed started up again.  The sight of blood in a cancer center seems to be the way to get things moving because after that it seemed like when I said jump, they did.  We opted for a CT immediately to see if we could determine anything about the pain I'd been feeling.  Talked about pain management and got a script for oxycontin, a slow release pain reliever, and some meds to deal with the constipation that those kind of drugs cause.

Got in to the CT and will get results tomorrow...  Rest of the day was a waste, I don't deal well with the pain and the meds make me tired, so we just got another room for the night and relaxed with delivery.

March 7-11th

So, these day's were defined by a sharp pain on the left side of my body in the lower abdomen.  It was extremely painful so I continued to take Oxycodone.   Makes me pretty sleepy, so I chanced taking it at work, and was able to stay awake and get through the week, but I know I wasn't nearly as sharp as I am familiar with.  Definitely used the Oxy to get me to sleep, but woke up to pain after that wore off... about 4 hours.  Then took another.  It's a pretty low dose and I try to avoid using it but sometimes it's necessary, especially for sleep.

A common side effect of the ramucirumab is nose bleeds and I'm no exception.  I've pretty much had at least one a day, mostly in the mornings, but sometimes at other times in the day.  I joke that no one should even look at my nose or it might bleed.  It hasn't been completely unmanageable, it is an annoyance though.

On the evening of the 11th, we drove up to for my next appointments on Tuesday.  That trip was painful and I didn't really get out of the car unless I had to use the rest room.  I didn't take Oxy in case I had to drive...Tylenol isn't cutting it.  We made it late and went straight to bed.

Good morning....pain

Woke up feeling really great actually.  Went about my prep process and about half way began to feel pain.  I took tylenol immediately and took some to work with me.  The tylenol worked well until about lunch and subsequent dosage wasn't able to keep ahead of the pain.  I finished the day a bit slower and a bit hunched over.

Pain intensified and I took small dose of oxy this evening and it's doing ok.  I'm curious if a muscle relaxer might be a better approach for the pain management because I really feel like my whole body is tensing up with the pain.  Will ask Dr. about that.

Driving Rain, Pain, and No 9

Well the drive last night turned out to be pretty rough actually.  Pain had started to present a bit yesterday, and gave me a general feeling of discomfort.  I generally avoid pain meds, so I didn't even take Tylenol.  Well, the pain progressed and I was probably kept awake on the drive because of it.  That's good, right!?!?!  I ended up picking up some Tylenol at a gas station and was able to make it to Allan's and crash(SLEEP) there like he graciously let's me ALL the time...

I got up to a light gray day in Seattle and went for my port blood draw, then meet with Dr.  Pain was still present and in varying degrees.  4-7 on the scale I suppose.  As long as I just sit, it's a 4, start moving a lot and I'm slower and 7.  Told Dr. about it and asked it it's any indication of a response, since it primarily was presenting at what I know to be tumor sites.  In typical fashion he wouldn't/couldn't say yes or know, but we decided to move imaging up to see if I'm getting a response.  That can change, because I have other indicators I can watch for a response.

We talked about the other trials I've told him I'm interested and he indicated what he's found is that they aren't accruing more patients.  I need to check that, but thought he could get better results.  He also indicated he's still trying to track down information on the Ixtodax trial that I'm interested in.  Said he's still working on it and hasn't had much luck, the lead investigator seems to be LOA.

Proceeded to infusion and was able to get in to that quickly.  I asked if they had to give me the Benedryl, I was under the impression it was only for the research med, butis actually for the taxol.  I was able to get it changed to claratin so I wouldn't be forced to stay another night to sleep off the benedryl.  It worked well, I didn't have any adverse reactions to the taxol, and left promptly.

Drive back was almost complete RAIN until about 30 miles from home.  Pain was actually diminished so that was nice, but I did get into some traffic and ended up getting home later than anticipated.  Was pleasantly surprised to find Beethoven's No 9 being played on the radio and had a good listen to that...not a bad driving tune there.

Driving to next Round of Chemo

The only real problem I have with my relocation for work and being on a clinical trial is the fact that I have to make such a long commute for the infusions.  Normally I enjoy a good drive, but having to do it at night is getting boring, not to mention the dangers with driving late, tired, fast, and a long trip.  Add to that the fact that I leave immediately after work.  Maybe I'm missing some downtime, but it's for a good cause.  Just a frustration...  Still, if this trial is working for me, it's worth it.

Getting caught up

Yeah, right!  But I am getting some things up here.  I made it back for work Thursday and finished the week.  I started to have some strange pains Friday night and they have persisted.  It's such a hard pain to describe, almost like needles sticking you in random places, but not superficially.  Other than that my mouth has been a little sensitive and my tongue is turning white again.  I think I'm doing just fine otherwise...