Frustrated but focused

I didn't make it to post yesterday. That's okay, I probably would have just ranted. I almost didn't make it to post today thanks to the magic of Reglan, that makes me unconscious.

We went to the Cancer Center yesterday morning prepped for a regular chemo day. But everything was off a little. My appointment was 9 instead of 8:30. I saw a different phlibotomist. While my BP was great, my heart rate was 110. Yet no one ever seems concerned  by that.

Dr. B comes in and says he spoke to Dr. A and, well, that was a disappointing result. He would have expected after three rounds of this for everything to be melted away. If I want to have my fourth round, I can, or if I want I can just go home. What the hell is he even talking about?

If I'm thinking about radiation, there might be something to do along with it, but he doesn't know that radiation is a good idea since I already had it, but he's not a radiation guy, so he'd defer to him.

Yes, we are doing radiation. Well then, we could try "this" drug. I'll get you some information.

I asked about the inflammation in my neck. Well, the wound could be infected. What are you allergic to? A lot of back and forth about how allergic to penecillin I am. He faxes in an order for an antibiotic I've never had. That in itself is impressive. However, I know from the survivors page that this particular antibiotic, in addition to being very broad spectrum, is also know for lots of serious side effects. I mention this. He says the same thing he always says, "It's generally well tolerated." Well there is the kiss of death for me...

Alright. So Kelly asks what he thought of the scans. He hasn't looked at them. He says, "I'm not much of a radiologist, I rely on the reports." No, the report hasn't come yet. So he has gleaned his information from Dr. A, but unlike Dr. A, who said there are a lot of drug protocols to try, he has either A) decided there are not or B) we have exceeded his comfort zone.

Kelly asked if we didn't do today's chemo and we didn't do radiation, what would the plan be. "Well, you're young and reasonably healthy..." The implication is I could go home and live my life until the cancer killed me, although he didn't come right out and say that.

The first thing I said to Dr. A. back in September is that I wanted to live. Lose my tongue, fine. Bilateral neck dissection, fine. Trach tube, feeding tube, maybe even have to saw my jaw in half, fine. When this second adventure began, chemo fine. Radiation fine even though the thought of maybe losing teeth, jaws, etc being a possibility, fine. I have so much I want to live for. So much I still want to do in this life. I am willing to endure much.

So we did not just go home. I had my fourth round of chemo and I have my pack on until tomorrow. Dr.F had no doubts about radiation because his nurse has already called to schedule me to see him next week and get  my mask made the following week. I trust him as much as I trust any doctor I ever met. We'll add it some kind of chemo drug, be it from Dr. B, or if I can get another oncologist, or Dr. A will call something down from Portland.

I am not giving up.

The rest of Monday I was irritated, but it is hard to stay upset when the phantom gardener has been at your house planting flowers and tomato plants. Thank you phantom gardener...what did you do with your egg pecking chicken???

I walked and ate lovely carrot soup and made lists and worked on a crossword puzzle. My port poke bled on my brand new bra.  I just can't have unmarred clothing.  And when I crashed, I crashed.

I don't know if you have experienced this, but sometimes you are so sound asleep that by the time you bladder manages to wake you up, you take a minute to figure out why you're awake, where you are, what you need to do about it, and how to get there. Oh, yeah, get out of bet. Take the chemo pump. Don't trip over a hose or plug. Stumble into a dresser. Get the door open. Around the corner. Don't trip on the dog dish. Find a place to put down the chemo pump. Untangle the feeding tube from pajama bottoms. Hurry hurry hurry. Sit.

It is only now you discover that not only is the seat down, so is the lid.

Alas. Up, lift lid repeat. Of course, it is somewhat too late and this will necessitate a change of pajamas, underwear and a wet cleanup in aisle one.

Cancer is happy to not leave you one shred of dignity at times.

However, despite my bathroom excitement, I slept for about 110 hours and felt really good this late morning when I finally got up.

Dawn, I can be taught. But then I'll screw it up the next month.

I ate, nebulized, got my canula cleaned, got dressed (Lesley I love the red shirt with the flowers and leaves!) and puttered about and before I knew it, it was time to go to Zachary's for some magic acupuncture. The problem is, I forgot the two hour rule.

Acupuncture was wonderful as always. My neck mobility is better tonight. The swelling is still up, but not a surprise there. I walked from the parking garage to his office and back and up two flights of stairs. And peeped in on Karissa's ballet lesson on the way by where the teacher was having her demonstrate a lot of the moves (mom brag!), and slipped in and visited with Heather for a bit.

Now it is after five when we get home. I am well outside the two hour rule. There is both UPS and dinner delivery at our house. I have bleed through the gauze around my feeding tube again (my tube does not like the steroids they give me. Of course it bled all over the other new bra. Sigh.

Reglan, a little food, water and tea help, but I've already triggered the reflux monster. Dang it. But, I only make it through a couple of puzzles in the newspaper and reading the Weekly before I am unconscious again. Which why I'm again blogging late at night. I have to get up from my nap to go to bed.

I wrote a long list of stuff I was going to do today. I'll be changing the date at the top to tomorrow...

Pump comes off tomorrow. Heather and Angie split Temple duty tomorrow. I have my list.

No news on Sara, but Dawn did get me an address so I can sent her something and let her know I'm thinking of her.

Joell's gift arrived today. No only do I appreciate it, everyone in my house who is tired of feeding syringes of various sizes rolling around will appreciate it. Now that we don't have to rinse trach tube canulas just in case we run out we can have the baggie dryer back too. I know, for most people that sentence makes no sense.

Barbara's knee surgery went well and she is home and is doing her physical therapy exercises.

My sister in law is still in ICU and has added a chest tube to her compliment of medical equipment. Wow. We hope for the news to start going the other direction soon.

And to Dear Miss Lori, I am sorry that Mother's Day was rough. I am not surprised. You and Stan are still the strongest people I know, the bravest, and I am so thankful you have each other and I know you are going to help so many, many people at Aimee's Place. I love you both.

Really hoping until tomorrow, but maybe Thursday.

Love,
Kiara