Haven't fallen off the face of the earth

I have been busy the last couple of days. Went to Eddie's swim lesson, then lunch with friends, then two appointments. Overdid it in the heat.

Today, I had an eye appointment and the doctor kindly changed out my contacts for me since my fingers are shaky and numb. Offered to do it again next month if I need it.

Then I had a nice long visit with one of my oldest friends, Paula. We have known each other 25 years. Her visit buoyed my spirits. She took me to my appointment, too.

It got too hot today, so dad and Scott will put our air conditioners in tomorrow as I can't survive the weekend in that kind of heat.

Still trying to find a balance with the new fentanyl patch dose, dilaudid, and constipation. Haven't hit the right balance yet.

Lymphedema in my arm is worse in the heat.

Two more arm radiation appointments. I think I am getting more energy, but it is slow work.I have much to be thankful for, including a wonderful care team, friends, family, and colleagues. Thank you everyone!

A Much Needed Break

I saw Dr. K yesterday and after recounting all the side effects I have, he agreed I need a break, at least until after Eddie starts school, so at least a couple of weeks.

We talked about treatment options - chemotherapy - and he also looking I to the TDM-1 trial. He will think about what is next and let me know. What this means is after arm radiation, I will get at least two weeks.

My mood is already better. Tired, but now thinking of other things to do.

He increased the fentanyl patch by 12 mg a dag (now 37 mg) so I don't have to take as much dilaudid, soothe constipation and bloating can start to go away.those sgmptoms are better, but my tummy still cramps.

My CEA was 20, which could indicate both tumor growth as well as tumor death. My interpretation is both. There are spots on my chest growing, but radiation is also killing cancner cells. The CEA has. Een as high as 50. So, it could be worse.

I am relieved I get a bit of a break. I will also get a ct scan to see if Nything else is brewing -will try to schedule for next week when I am stronger.

Herceptin tomorrow

I was supposed tom have Herceptin and Zometa on Friday, butnright before my radiation treatment, my stomach got so bloated and was cramping that I was in tears the whole time during radiation. The docs wanted a blood draw, but the nurse at the radiation center couldn't get a vein so I wet to Ambulatory Infusion. The nurses there are upset I had the port taken out since it makes it harder to access a vein but the kink in the catheter, pain and loss of range of motion was too much.

The new symptom was like the one that broke the camel's back. Other side effects I have are:

- fatigue
- pain in my arms and shoulders
- yeast infection in my mouth
- constipation
- occasional headaches when the steroid wears off
- lymphedema
- arm wound is weeping lots of fluid so after awhile, my shirt gets wet
- bald
- weakness and shakiness
- numb fingers in my right hand - the shakiness makes it hard to write, even my signature

Meds that I am on to counteract side effects:
- steroids (but weaning off them)
- dilaudid
- fentanyl patch
- occasional Tylenol, for the headaches
- Valium to sleep mat night
- medication for the yeast infection
- gas-x for the bloating
- stool softener
- Chinese herbs
- probiotics
- an acid reducer

I am feeling a bit better today, although I may have stayed up too long cuz my left arm got swollen. Laying down with my arm elevated helps with the edema as well as the pain.

I am worried about getting through Herceptin tomorrow as I couldn't handle it on Friday. Just worried about being comfortable through it. I also have radiation (6 more sessions) and will see Dr. K. But I got through Friday as I was away from the house for three hours and had calmed down by the time they drew my blood. So that is how ai will get through tomorrow - one thing at a time. I think I am also supposed to get my CEA.

My dad has been great about getting my meds. Eddie has been understanding, too. And I think that I am a tad better today than yesterday. So I will continue to take things day by day. I have much to be thankful for - a supportive family, a great care team (the radiation nurse stopped by at home today and yesterday to change my dressing - send her blessings, too).
Thank you so much everyone! Life is still good. I hope to get outside some to enjoy the deck and maybe entertain visitors. Thank you all!

Didn't sleep as well

I didn't sleep as well last night so I think I am going to lay down and rest again. I took two dilaudid about an hour ago and it is catching up to me.

My shoulders are extranachey this morning and I think the dilaudid is finally kicking in and helping.

I ended up with bloody urine again lad night. Now I think it might be related to diet pepsi. I had one Sunday and ended up with bloody urine through the night. Inhad one yesterday and now I am having it again. So no more diet pepsi or Ibuprofen at least for the next week or so. And more rest.

I need to pay bills later today. But rest first. My last WBR is today. Thank god. Mom wanted to celebrate but I think that needs to wait until I have more energy and maybe less pain.

I may be really tired now and not doing much. But on the whole, I think I am doing much better than many. If I can get through the next few weeks, I can start gaining strength and energy. Then the attention will be on keeping this crap under control. I have a son to raise.

I am just happy that my family is here to help me so much. Seriously. All I do is go to radiation, eat, sleep, and rest.thank goodness for family to help!

Continued taking it easy

I am continuing to take it easy. Dad and Scott continue to work on the deck - it wile really cool when it's done! Mom and dad are out running errands. I am finding it harder to find movies on TV today, but they are there.

I slept okay last night, too, although my TV was on most of the night. Seems like I might wake up every couple of hours, fill my glass with ice, and eat some fruit snacks. Seems like these fruit snacks work really well for me.

I think the Dilaudid is making me constipated, but better that than feeling pain. Will get Chinese herbs to help with that.

My neck and shoulders really hurt when I woke up about 10pm last night, so I lowered my pillow and that helped for today. Still used a lot of heat to loosen up.

I get tired every time I take Dilaudid, but that is better than not sleeping.

I didn't even take a Zofran today. Let's see how ling that'll last.

It is a sunny day, but not as hot as yesterday, thank goodness. Seems to make my lymphedema worse. But resting as my doctors ordered.

"'Cuz Two out of Three Ain't Bad"

The last few days, I've had a headache (from Friday evening to today, that extends from the back of my neck to my temples and on the top of my head). I've also had a leg cramp in my right calf early Friday morning. And, I've also had several hot flashes in the last few days.

When I looked up symptoms for Dilaudid withdrawal, I learned that leg cramps and hot flashes are common.

Two out of three ain't bad.

Not sure where the headache is coming from, but my guess it's part of the Dilaudid withdrawal. I'm trying to wean myself from them. I've gone from one every 4-6 hours early last week, to one Dilaudid every 6-8 hours on Tues/Wed, to one every 8-12 hours Thurs/Fri/Sat. I didn't mean to do 12, but that's what happens when it comes to sleep and the timing of when I take the Dilaudid.

The left arm/surgical side doesn't hurt much. Now the lymphedema hurts more - like a bruise. It's the right arm that bothers me, but it helps when I try to relax it. So, I think that I can get by with just the Tylenol and Ibuprofen. (I only take Ibuprofen once a day.) So, I will try to go to one every 10-12 hours and then stretch that so that it's one every 12-14 hours for a few days and then make it 1/2 every 12-14 hours and then do away, eventually, with the half a pill. We'll see.

Tomorrow, I head to Portland to see the plastic surgeon. Then I see the local surgeon in town.

I guess that means today, I need to grade papers, pay bills, and help Eddie. Yesterday was my day to be lazy. Today is my day to do some work. I feel like it, so I guess that's good!

I plan to keep weaning myself from the Dilaudid. I'll let you know how it goes.