No more ibuprofen

The doc at the radiation center took my blood and a urine sample yesterday, but by the time I got there, the bloody urine has gone. We figure it is the Ibuprofen, which I took on Sunday. They alsomsaid I could take a second dilaudid pill so I age been alternating two with one to help with pain.

I cried a lot yesterday, especially at the radiation center. I can't wait for the WBR to be over. Two more sessions. Then I hope the nausea goes away and I just have to deal with the pain from the arm radiation. 15 more sessions of that.

No tears today so far. That's good.

My hair is falling out from the WBR. I expected it. Maybe in a month it will start growing out again.

Still constipated from the dilaudid. I take a stool softener and Chinese herbs for it.

Oh. I found out that I will start having to pay for my health insurance in October - $500 or so a month. And Eddie's social security benefits will also be deducted from my long term disability payments. I need to figure out monthly expenses here soon. We will be okay, but money will be tighter come October. I have extra now, so will save up. Nice to know what the finances will all look like finally so I can talk to Eddie's dad.

Going Out In Public

I have found myself very reluctant to go out in public in the past week or so. I've thought about this in the last day or so and I think I know why.

The neurosurgeon shaved my head last week - to even out my hair - so I'm back to wearing hats.

I also wear a compression sleeve on my left arm.

Then, there's unicorn boob (chest tumor) that sticks out about 1 to 1.5 inches near the center of my chest - it sticks out father than the TRAM flap.

And, then, there's the diarrhea that seems worse in the morning. As I type, my fingers are a bit shaky.

Finally, I have been preoccupied since Friday about skin mets - I think that the areas that aren't healing have cancer cells in them preventing growth. So, I've been doing a little research trying to figure out what I can do post WBR (whole brain radiation) to get that under control as I want the wounds to heal.

I am really sick and tired of wounds. I have two of them right now.

For some reason, the compression wrap seems to bring the most questions from strangers. With my friends and colleagues, I just have to say, "I'm wearing this so that I can decrease the lyphedema". But with strangers, it invites more questions about why I have lymphedema. On Friday, the clerk at Freddies then went on to tell about her cancer scare and how she's got to go in for a biopsy soon - it wasn't breast, but another organ. I don't want to talk about or comfort someone else right now. I'm too preoccupied about what's going to have to happen next.

My dad has told me twice not to worry too much into the future - just get through this week's surgery and the WBR beginning next week. But I sorta feel like I need to look up options so I can bring them to Dr. K on Wednesday. I want to be prepared for the next leg.

I am so preoccupied that I haven't felt like working on mosaics or the blogger analysis. I am also worried about getting another infection on the chest tumor site after surgery - I am to shower with Hibiclens Wed evening and Thurs morning, but I can't shower because of the wound in my armpit. So, I need to talk to a nurse about how to adequately clean (because while I showered the night before the April 1 surgery - or that morning, I only did it once and I don't recall really using that stuff very much, so I'm afraid that's why I ended up with such a huge infection afterwards). The chest tumor also bleeds when I change the dressing, so I'm worried about needing a transfusion.

So, I guess I'm full of anxiety and worry. I will call the surgeon today about making sure they are prepared for a transfusion. I will call the admitting nurse about showering with Hibiclens. I need to call Disability and see what is going on with my claim, I need to change an appointment and preregister for the surgery.

Once I make all these phone calls, I hope I can settle down and do something more positive and productive.

Oh, one thing I found about the skin mets - I will probably have to do a taxane. I found a bulletin board where someone posted a Japanese study that included a drug that I've not heard of but is an estrogen blocker with paclitaxel. I think there were only four treatments of the latter and 120 days of pills with the former (called toremedine, I think), but in the case they treated, the skin mets disappeared and stayed away from the woman for two years as of the writing of the article.

Writing about it all helps. I don't mind visitors coming to visit me at home. I just don't feel like going out in public and talking to complete strangers about what's going on with me. Maybe once unicorn boob is removed, I'll feel more up to doing something outside the home.

Oh Yeah - I Forgot - Hair's Falling Out

When I washed my scalp yesterday afternoon and this morning, my hair started falling out. More is falling out now. it's weird though, it seems to be falling out more in the front, than at my sides and ears.

I wonder how much will be left when I see the neurosurgeon next week. He was going to take clippers and shave the rest off to match what was shaved off for surgery.

I always find it a fascinating experience to just reach up, gently pull on hair and it comes out in my fingers. it's the weirdest thing. It doesn't make me upset or sad. It's actually kinda funny.

HAZ Today - HI Next Wednesday!

I'm here at the Infusion Center, waiting to get my chemo. Turns out that they're not getting a good blood return on the P.A.S. port in my arm, so they put in some "TPA", which will break up the blood clot which can sometimes form on the catheter.

Today is my last HAZ treatment - yay! I may go back on it, but for now, I won't have Abraxane until sometime after surgery, if at all. I'm excited about the prospect of my hair growing back.

My blood work does show that I'm slightly anemic. My RBC (red blood cell) count is 3.19 x 10 to the 6/uL (normal is 3.9 to 5.1); my hemoglobin is 9.8 g/dL (normal is 11.5 to 15.4); and my hematocrit is 28.2% (normal is 36 to 46).

Also last week and through last weekend, I was taking 10 mg of melatonin at night. My normal dose is 8 mg. I hoped it would help me sleep better, but in the end, I think it was causing me to feel that dead-dog tired fatigue. I've had more energy this week since I went back down to 8mg; it probably also has to do with having two weeks to recover from the HA treatment on Jan 14.

I spent some time yesterday organizing all the reservation numbers for our flights to HI and for the car rentals. I also looked up the map and directions to the place we're staying on Kailua Beach on Oahu. I started getting excited. I found out that we won't be too far from another beach where we can kayak out to some rocks, so I think we will definitely rent kayaks one day. I also saw a satellite image of the beach - it was a sunny day, the water was blue, and the beach was light-colored sand. Heaven.

I'm worried about getting too much water while kayaking, though, because of the wound. It's about 6" x 4" (at least) large, which means that microbes could have a field day in the wound and I'd end up with a nasty infection. I need to think about the best way to protect that area . . . a friend suggested a dry suit, so I might see if it's possible to rent one.

I was also contacted by someone (S.) that I went to high school with who now lives in Honolulu, so we'll probably at least get together for coffee or something. I may also try to have lunch or something with my friend's parents, who live north of Honolulu. I might meet up with the editor of an anthropology book series. We will go to Sea Life park. I would also like to go to the swap meet/flea market at Aloha Stadium, if it still exists.

Mostly though, I expect to hang out on the beach, read a book, watch Eddie play in the water, wade in the water myself. Plenty of sunscreen for my neck and other exposed areas of my bald head, too.

I'm excited!

Neckies

A few weeks ago, I went to a local craft fair and found what the creator calls "Neckies". They are made of fleece and button around your neck. She makes her own buttons, too.

I wanted to share the website for them because I bought one and find it to be nice and warm on your neck, an important consideration if you're bald and not wearing a wig. It's comfortable, too!

Anyway, the creator is Gail Krenecki and her website is:

http://www.clayfulmood.etsy.com/

Enjoy!

That's the Plan, Man!

I saw Dr. K today . . . it was great to confirm with him that the whole area with the wound has changed - in particular, the satellite lesions are smaller and a couple of the lymph nodes are smaller. So, I am responding to the Abraxane treatment. He asked how the treatment is going in terms of side effects, and other than fatigue and hair loss, it's doable.

He also took a look at the wound - morbid curiosity he said - and I'm glad he did so that he knew better what the surgeons and the wound care nurse are seeing, And, he's willing to let the surgeons decide if and when we do surgery to remove the rest of the diseased and dead tissue and to use plastic surgery to rebuild it.

Which means that I do the next round of Abraxane treatments, through November, and if the surgeons decide to go forward with surgery, then I'd go ahead with it in mid-December. However, if the plastic surgeon is away and I end up waiting until January, I will get the third round of Abraxane treatments in December, then take a break and do surgery.

After I recover from surgery, then I would do another few months of Abraxane. AS long as I keep responding, then Dr. K would keep me on it for six months total (with a break for surgery, if that is what we decided to do).

Fine with me. So, I've got several months more of being bald. I will definitely get a Henna tattoo at some point! : )

Pictures - Thinning Hair to Bald to HATS!

This past week, my hair started falling out.  The nurses said that some people only get thinning hair with treatment, so initially, when I started seeing a few strands on the pillow on Tuesday, I just had it cut short and spiky on Wednesday in case I kept some of the hair.

Front view

A side view

But the next day and Friday, more and more started falling out.  It's starting to look rather thin.

Thin Hair!

On Saturday, I met some of my former students (now friends) for coffee.  I got a bite to eat and had some leftovers that I thought I'd give to Cat, but when I looked down on my plate . . . I saw a strand or two of my hair in the eggs!  Yikes!  It was falling out like crazy.  Soon, it looked like I had mange!  I decided then and there it was time to shave it all off.  But first, the search for hats started:

Cat in the Hat

Cat and I went to Goodwill.  She helped me pick out two, plus several scarves to keep my neck warm.  Cat was looking for Halloween costumes.  

After Goodwill, I picked up dad and we went to Kohl's in Albany.  I found a couple of cute hats, a scarf, a pair of gray cords, a cute charcoal gray jacket, plus some clothes for Eddie, mom, dad, and Scotty.  (Hey, things were on sale and I had a 20% off coupon.)

Then, it was off to Lebanon to see Amy and Josh, who had a few hats to give me.  I asked if they had an electric razor - they did - so I asked Josh to shave my head.  We went into the back yard and voila!

I'm bald again!  Thanks, Josh, for shaving my head!  No more finding hair in my food!  : )

Now I'll model the hats . . .

Goodwill Hat

Amy and Josh hat

Kohl's Hat

Another Kohl's Hat

Amy and Josh Hat

Amy and Josh Hat (although Heather claims it's hers!)

Another Amy and Josh Hat

Another Amy and Josh Hat

Goodwill Hat

This is a hat Joan gave me eight years ago, the first time I lost my hair to chemo.  She bought it in New Orleans!  Thanks, Joan!  It's one of my favorite hats!

Seriously, I don't mind being bald.  For the most part, the side effects of Abraxane are doable.  In fact, I feel emotionally happier and lighter than I have for months.  Literally, months.  Then again, maybe I feel "lighter" because I have no hair up there!  Ha!!!