Living with pain

As I am trying to recover from the WBR and the arm radiation, mostly by resting, I do live with constant pain. I mean, the fentanyl patch takes the worst of it away, but I do take every 4 or 5 hours for the arm and shoulder pain. I keep heat on my right shoulder and back but the front of my right shoulder, my bicep, forearm, and sometimes my right wrist hurt, so I keep heat on that, too. I guess the idea is to be comfortable, so I try to domthat as much as possible.

In the meantime, dad has taken over some duties tom take Ed on outings. Eddie is at swim swimming lessons now. I have said it before and will say it again - thank goodness for family!

I just wish I wouldn't tense up ny right shoulder. Not sure why. Well, anxiety, I guess. But I should concentrate on rest nd recuperation now, then worry about the anxiety later.

I plan to ask Dr. K not to start any heavy duty chemo for four to six weeks. I want to gain strength first. I will just do Herceptin and Zometa for two more cycles and then see whatnis next. I have Herxeptin this Friday. Hopefully that will keep things under control for now.

I continue to be thankfulmfor everyone's support! Thank you!

A new symptom

After a weekend of rest from radiation, I hardly have any nausea. I do, however, have more pain in my necks and shoulders, mostly left but some right, too. So sometimes I take another dilaudid, which is in acceptable limits. It says to take one pill every 1 to 3 hours for pain. I usually take one every four hours. But last night, aboutn3am, I took dilaudid, the anti nausea med. And Tylenol and ended up with bloody urine since about 4:30am. Thisnhappened twice last week, too, so I stopped taking Ibuprofen (did take a dose yesterday afternoon). I hope it is just a combo of meds on. Nearly empty stomach, ut will talk to the nurse today, especially if the bleeding persists.

Only three more sessions of WBR. And 16 more of the arm. Hope the arm pain starts fading more later in the week. I think if I can get through this week, I should start going up on the energy front. Now, I eat, watch TV, rest, sleep or nap, and rest.

Eddie is home and I am glad for that. He stutters less here than with his dad and seems to enjoy just being his own company. My folks have said that they will try to take him on some outings a couple of times a week while I rest from the treatments.

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.

Dilaudid helps with sleep

I got a lot more sleep last night. I started taking Dilaudid every four hours for pain, but it also makes me drowsy, so I sleep more, especially at night.

I do have nausea, so I take Zofran regularly and I eat lots of little meals. I hope that after 8 more sessions of WBR, then I can begin weaning off the steroids - the docs say the swelling goes down after a day- which I am keeping at 6 mg per day if I can, of the Decadron. 6 is better than the 16 I was on. I will deal with a little bit of nausea in exchange for going on more steroids.

I don't know what to expect with the arm, although the doctor said to make sure I take Dilaudid within a an hour of doing radiation. She said itmwill get worse before it gets better.

But at least I feel like I am doing something active for the tumors in my grain and armpit.

I expect that TDM-1 trial in Stockton, if I am eligible for it, won't take place until late September, if at all. Rumor has it, though, that Genentech hopes to have FDA approval for the drug to be give to patients in their home clinics by the end of August.

In the meantime, I am just glad I slept. Even if it makes me tired each day. I just rest and watch a lot of movies on TV.

I do have more numbness in my right arm - the three fingers and now into my right forearm a bit. I try to stretch that arm frequently. I am also back to wearing a compression sleeve on my left arm, although I don't go far up my left ATM, to leave the field clear for radiation. My eyes are also having a tough time seeing thongs up close, so between them and my arms, I don't stay on the computer much. I may have to get bifocal lenses.

Still need to work on financial matters, like insurance for me and Eddie beginning October 1. He is covered also by his dad. I will need to work on that next week.

It is much better to feel positive when I feel better. As my acupuncturist says, I am strong, even when I cry. Just glad Eddie is back East with his dad right now while Iam feeling even more under the weather. I hope I feel stronger next week when he returns home. Best not to look to far into the future right now and take things day by day.

Rest. It does a body good.

One of my blogging friends, Laurie, commented on my last blog post that rest is as much doing something as anything else. I feel like I have been doing nothing but rest lately, but it is a good reminder - again in this yang-addicted society and with my yang-addicted personality- that it is okay to do nothing.

I haven't done much today. Just ran an errand with dad. My eyes can't focus on anything close (one reason I am not blogging or on Facebook so much). I napped once. Chatted on the phone with a friend. But that is about it.

Yesterday, I paid bills and grouted my mosaic. Just need to do some finish work on it and put sealant on it and it's done.

Took the antibiotic yesterday and started Tykerb (just one pill so my body can get used to it and my digestive system can heal some more). So far so good. My stomach still cramps when I eat.

Oh, I also took a longer walk today. I try to do the "shee-shee-whoo" breath when I do. It is a qigong technique. My acupuncturist says that her teacher knows a group of cancer patients in China who do this three hours a day andnthey are cancer free. It is all part of my plan to take deeper breaths and work the anxiety out of my system.

I have take Valium the last three nights and that also helps. I am able to go longer stretches without eating (otherwise once an hour), so now I feel more human. There is less tension in my shoulders, which is a good thing.

Christmas Happenings

As expected, I didn't sleep well Friday night - that was due to the Abraxane. So, I spent most of Saturday at home. It took me a few hours to wrap presents, in-between watching movies, of course. Mom and dad had wrapped their presents a few days ago, so now our living room is even more festive with presents under the tree!

I also brought a meal over to a colleague and visited with her and her husband.

In the evening, I changed my toenail color and put a nail strengthener on my fingernails, which continue to chip and split. I found a dark green color at Freddies the other day that I'm using on my toes. Dad thinks it looks more like teal, which it does in some lights. It has sparkles. I like it!

I also put a ribbon inside the wool felt hat I bought for myself a couple of weeks ago. The wool made my head itch. Now, I hope that it won't. It's not a professional stitching job, but it will do the trick.

Today, I have to run a few errands, but otherwise, I plan to play with beads and jewelry. Also, make a couple of final preparations for heading to Seattle next week for a couple of days. Eddie wants to go to the Mindbender's Mansion exhibit at the Pacific Science Center. They also, coincidentally, have a Harry Potter exhibit as well. I think we're heading up with my sister's family.

I think I'm having coffee later with a friend.

In other words, a relaxing day. I didn't get as much sleep as I wanted . . . the only thing marring a good restful weekend is an academic bully. But we won't talk about it here. I'm putting that aside until after New Year's.

Four Appointments Today . . . and No Edits

I woke up this morning still feeling tired from yesterday. I also had four appointments: 10:00 to see my therapist, 11:15 to see my surgeon, 1:30 to see my oncologist's nurse practitioner, and 4:00 to see my wound care nurse.

I went to my office first, with the good intention of working on edits for the grant proposal, but I checked in with my office manager - had to talk about my graduate student workers and to thank her for attending the Launch Party yesterday. Then, I visited with my friend, B. Then, I wrote some emails and then it was off to my first appointment.

I realized I had forgotten dressings for my wound - so on my way to see the surgeon, I stopped at my house to pick them up. Luckily, my house was on the way.

I got to the hospital and parking was awful. I circled the lot for 15 minutes - I stopped for a few minutes because a truck owned by the Culver Glass Company had taken two spots. So, I wrote him a note, "Parking is limited. You selfishly took two spots." Then, because the company number was on the truck, I called and told them that one of their employees took two parking spots and that other people trying to find parking in a limited area was upset.

Finally saw the surgeon after I followed a man to his car so I could snag his spot. The surgeon's still impressed with how well the wound is healing - I showed him the few nodules that have cropped up behind the wound in the upper quadrant. But he felt I should continue with Abraxane since it seems to be working and the wound healing.

Then, because I had to get something I needed from my Humanities Center office, I stopped by downtown for lunch (salads from New Morning Bakery), picked up what I needed, then back to the hospital to see my oncology nurse practitioner. They were running late - I think I was there just over an hour - but it was a good visit. She hadn't seen the wound since late September/early October and was impressed with how well it has healed. She also thought I should stay on Abraxane for now. I have this theory that the new nodules have cropped up because Abraxane has caused my white blood cell count to go down - it was 8.0 (whatever the measure is) when I first started Abraxane. Last time it was measured (the week before Thanksgiving), it was 3.7. That means that there aren't as many Herminator-2 cells running around to kill the cancer. As H. said, no one really knows why the nodules have cropped up and whether or not it would be better to stay off Abraxane and let the t-cells regenerate. What they do know is that Abraxane is working, so for now, we stay the course. I'm fine with that. I can handle the side effects.

Then, it was time to pick up Eddie, but I stopped at home to get his after school snack. After picking up Eddie, we ran an errand and I had about 15-20 min at home before having to go back up to see the wound care nurse. She has seen improvement over a week ago. The cavity is now only 0.8 cm deep; last week, it was 1.5 cm deep. Part of the reason why it's improved so much is that the top flap has collapsed down a little bit. Last week, the big area was 5cm x 2.5 cm and now it's 4.0 x 2.5 cm. Even the smaller open area has decreased in size from 1cm x 1cm to 0.8cm x 0.5cm. So, everything looks better - it's the new nodules that have cropped up that is a bit worrisome.

By the time I got home, I was tired. So, I listened to my body (the subject of my discussion with my therapist today was about cultivating my yin energy, my rest) and didn't do anything but watch TV. I thought that I could work on the edits for the grant proposal . . . but I decided rest was more important.

Well, good night. I hope you all sleep well!