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.

A lot going on

On Monday the 25th, I saw Dr. K, the next day, I saw the nurse, on Wed, I saw the radiation oncologist, and yesterday, I saw the plastic surgeon in Portland. The end result is that there are a couple of smaller tumors growing under my left arm, near the armpit. So we did a planning session today and will start Radiation to both the brain and the arm on Monday. I have 8 more sessions of whole brain radiation and 15 more sessions of the arm. I am about ha
Way done with whole brain radiation.

30 days after radiation, I will have another brain MRI and probably a CT scan and can hopefully get on a clinical trial for the TDM-1 trial. But it is in Stockton, California and I would have to go every three weeks. That is what Dr. K is hoping for. Or I could start another kind of treatment here, like a Taxane. But we will cross that bridge when we come to it.

The tumor in my chest is growing, but as the wound care nurse said, it would probably be huge by now so it is good that I had the bulk of it taken out five weeks ago.

In the meantime, I am taking lots of drugs for side effects. Zofran for nausea (but maybe I can taper that off as the antibiotics gets out of my system), steroids for swelling in the brain which helps with headaches and nausea, dilaudid for pain (due to the growing tumors in my arm and increased swelling), Valium for anxiety and sleep, and Ibuprofen, I. Addition to Chinese herbs and supplements.

I am back to not sleeping, get weepy from the pain (controlled now with the Dilaudid), I am a little nauseous, but eating a lot and often helps with that. My appetite is picking up but it is a lot of little meals and I don't eat much. I am not very good company. I am gonna get through these next few weeks. I think next week will be the worst. Or maybe it was this week as I find the right combo of meds to control the side effects. I do think the steroids keep me from being so weepy and the pain meds help too.

It looks like my summer is shot. At least my dad, brother, and friend are building the deck. So I guess we concentrate on the back yard. I can't sit for long in a restaurant, so I am at home or at my appointments.

I am not posting much on the blog or on Facebook because my arms hurt. Maybe now that I take Dilaudid, I can post more again.

Also say Happy Birthday to my son today .. . He turns 11! Wow!

Doing better so far today

I ended up with a lot of nausea on Friday -this was after taking the standard dose of 3 250-mg pills each day and one dose of Flagyl. The nausea lasted into Saturday morning. I took Zofran Friday night and Saturday morning. I am happy to report that since I stopped the antibiotic on Thursday, I finally don't have nausea.

But I do have pain in my shoulders and my right forearm. Dad finally talked me into taking Dilaudid so I took some about 1am and again at 7am. I will take that instead of Tylenol and will alternate that with Ibuprofen. I thnk the pain is less and allowed me to sleep better.

I do think the infection in my left arm (not armpit) is less. For now I will just use the antibiotic/silver powder and silver dressing, while I do WBR.

So my plan is to do the WBR, take the pain meds and the anti-nausea meds and try to keep the infection from getting worse.

Dad and Scott are building the deck in back. My friend will come over and help tomorrow. I think the rest of the summer will be spent trying to rest. And work on the back yard. Maybe later in the summer, I will be able to travel more..

Thank you all form the birthday wishes!

Looks Like WBR After All

Yesterday was my birthday - I'm now 47 and expect to have many more birthdays!

I am doing okay. I think the time at the coast helped me regain some of my mental and physical strength. I might have slept a lot, but I also took long walks on the beach, too.

I saw the radiation oncologist - the one who does gamma knife in Portland - and he suggested that I do whole brain radiation at this time. It is because of the size (about 3.3 to 3.5 cm by 2.2 cm), the irregular area of it (it is not perfectly round), and because there is a cystic component. The good news is that it is not next to the area that causes nausea or vomiting. He also didn't think I needd to start right away. But I decided to go ahead and start next week.

My digestive system is healing. I don't get the cramps like I used to in my stomach. I still just have diarrhea and the only time I really have any nausea is with Tykerb. So, I am off of Tykerb for a few weeks.

I am only going to do 10 treatments of WBR. I have already had 2. They want to do 13. I'm doing to stop it at 10. I also want to start with a lower dose next week - 200 rads (or whatever the measurement is). The usual at this point is 250. But as I've said before, I think the standard doses are for women (or men) who are bigger than I am. I want to see how well I tolerate the treatment.

In the meantime, through the weekend, I will stay on antibiotics. This is because a new wound opened up under my arm - where an area grew. It also bled a lot when I took the dressing off yesterday. So, I took all three Keflex (only took 1 a day for the last week and a half) yesterday and a Flagyl. I want to try to take all three through this weekend to see if that clears up that infection. I saw the wound care nurse yesterday instead of today. I won't take the antibiotic when I start WBR next week. The area where we're trying to grow skin is 2.5 x 0.5 cm, down from 3.5 x 1.0 cm last week. So, that's healing. The chest wound is also healing.

I guess I'm okay with the decision. It will all (or most of it) will happen while Eddie is bak East with his dad.

All in all I broke even at the casino. Pretty good for several days of playing. My sister, though, won about $300. She stopped when she won. Smart girl.

My parents got me a card and flowers. My son also got me a card and a gift certificate to a local coffee place. We treated ourselves to yummy summer drinks there yesterday, after his appointment. I also got a card from my oldest friend, P., who I need to write an email to. I got a card from my supervisor, too. That was cool. Plus over 100 well wishes from Facebook friends. My cousin and her husband are visiting last night and today. They head on up to our cousin up north later this afternoon.

My biggest problem is that I can't seem to relax my shoulder and arms enough. I'll relax them to go to sleep - and will sleep for a few hours (last night about 5 or so), but then I can't get comfortable again. It seems that laying down is the only way to relax them, so I tend to nap a lot.

I will meet with my grad student later today and see about getting her started on a couple of projects. A friend of mine also moved into my office - it will be interesting to see how she moved things around!

Have a good Friday!

Enjoying myself in Lincoln City

I have been enjoying myself so far in Lincoln City, but I still need to rest a lot. I wasn't nauseous yesterday but was today and that is because I started alternating my meds -yesterday I had the antibiotic and today the Tykerb. Turns out the Tykerb gives me more nausea. I was nauseous on our way to the coast on Saturday, until after lunch, same as today. Because I was nauseous Saturday, I decided to alternate the meds so I could enjoy myself more.

Took two naps Saturday evening, slept okay Sat night. Didn't sleep real well last night. My arm and shoulder get achey and I can't get comfortable. I wake up every 90 to 120 minutes at night.

I am also not wearing the compression sleeve because it seems that my infection in the armpit gets worse when I do. So, I will put up with a fat arm until that wound heals. Maybe I won't get an infection since there won't be open skin.

I don't know if I reported this or not, but the neurosurgeon advised me to do whole brain radiation. I think I will do gamma knife for now and then do WBR radiAtion later this summer. I have been getting a headache behind my right eye on occasion, which makes me think the tuner is there.

So it is a hard thing - take the antibiotic and feel better and heal the wound or take the Tykerb to keep any more brain tumors from growing and feel more nauseous (my digestive system is still healing so I think that is why I feel nauseous with it.) I am erring on feeling good right now since I am at the coast and hope I can get gamma knife for the tumor next week, when Eddie is out of town with his dad.

Have taken several walks on the beach and try to practice my "shee-shee-whoo" breath when I do. Turns out I can walk to Roads End Park, walk to the beach, then walk to the casino,then walk on the beach a short way until I find the path that takes me to them road our house is on. Takes maybe an hour, but usually longer since I spend time in the casino. So far, I think I am $30-40 to the good.

So it is good. The weather hasn't been great so I can't hang out on the deck as much. But good walks on the beach. I do feel more relaxed since I don't have appointments.

We are all fairly lazy. Eddie is having fun with his cousins. So it is good. I just wish to he'll I felt stronger and slept better.

To the coast today

In a few hours, we head to the coast for a few days, until Wednesday. I sure hope I can rest, relax, and most of all, sleep.

I didn't sleep well last night - maybe 4 or 5 hours. I also slept about an hour after dinner.

The wound in my armpit is slowly healing. It is mow back down to 3.5 cm x 1cm. And the chest wound is healing.

I have been streching the right arm -we think there is nerve tension. But it is bothering me again this morning.

I ran some errands yesterday morning and felt good. But was lazy in the afternoon. I packed in the evening, but was groggy because of the nap.

Let's hope my time at the coast is more relaxing and restful.