More Baby Steps

Over the weekend, I had less and less drainage from the wound. The JP drain was only collecting about 20 ml of fluid in 24 hours. So, I saw the surgeon yesterday, who pulled the drain out. So, now, finally, no more tubes coming out of me.

There's also less drainage coming from the wound. L., my wound care nurse, was able to debride most of the dead tissue from the wound. So, now I have less dressings. There is also hardly any odor (yay!) and less leakage onto my clothes. I was able to wear a shirt (a pj top, really) for 24 hours without anything getting on it. A record!

I started taking my Chinese herbs, turmeric, and Vitamin D3 over the weekend. I can't prove it, but I swear the turmeric is helping the wound heal!

I feel I can lift my left arm higher, too.

I still have a low grade fever (up to 100 once yesterday) off and on.

But I still tire easily and need to lay down after activity (like after an hour with the wound care nurse). Also, my left calf became achey Sunday evening and it only feels better after I put heat on it. (My sis said, "oh, no, maybe it's deep vein thrombosis!" which made me worry. I don't think I have many of the risk factors, other than laying down a lot and having a long surgery. My leg isn't swollen or red, though, so I don't think I have it.)

My colleague offered to take my class this week. When she came over to visit (thanks for the cornbread, N.!), I was still emotional about things. I'm not quite ready to face students. I get uncomfortable sitting at an upright chair.

But there are improvements. I might even try to wear real clothes today. Or at least, real pants.

Infection and Drainage

I don't think I've written about this before. On Tuesday, when they took off the wound vacuum pump, the docs noted the smell and that I had a pseudomoniasis infection. I guess it's not all that uncommon, especially since I've seen hints of pseudomonasis in the wound off and on (maybe 5 times) in the last six months.

So, while the wound/skin graft is healing under my armpit, the whole area needs to be cleaned with Dakins solution (partly bleach) for a few days. We started this yesterday morning. I was supposed to change the dressing last night but after the trauma of the trip home and one of the interns inadvertently ripping (well, it wasn't quite that bad, but he could've been more gentle) part of the dressing off the skin graft donor site on my thigh, I knew I couldn't face seeing the wound.

I finally got my courage up and changed it this morning. In a way, it's a bit ridiculous to think that I can do it because I really can only use one hand since the other one is lifting my arm up. I also didn't want my family to change it - my sister maybe, but I really didn't want anyone else to see it. Hell, I don't want to see it. But I saw it this morning and the sight affected me. The defect is larger than I thought. I had visions of it being all almost normal, but that's not the case. There's an area of maybe 3-4 inches long and a few inches wide that is about 1/2 inch lower than the rest of my skin. The docs never told me what to expect and I didn't ask.

Anyway, I'm in the process of wrapping my head around the sight of the site. I keep remembering that they were able to get all the cancer. The surgeon said all the margins were clear of cancer. And, that's good.

The wound care nurse thinks that the graft will grow over some of that defect. We will see in time.

I am so glad I saw the the wound care nurse today. She changed the dressing in my armpit - made sure it was clean. She put the Dakins on it and wrapped it all up again.

L. (the wound care nurse) also changed the dressing around the JP drain site. There was a bit of pseudomoniasis around that area, too, so she again cleaned it and put a new dressing on it.

Then, it was time to tackle the donor site on my left thigh. I was not looking forward to it because I knew the dressings were already sticking to the new skin. It's like ripping off a scab to a big strawberry you get from sliding in softball. Anyway, L was gentle again. She cleaned the whole area because there was a hint of pseudomoniasis in the donor site as well. She took off the whole old dressing, then put collagen over the donor site, covered it with oil emulsion dressings (which will NOT stick), then transparent plastic. The whole thing is wrapped in an ace bandage.

So, I have a few sites of drainage. TWo places under my armpit. One by the JP drains, and the donor site. All were leaking onto my clothes. As L. said, if it's leaking, then it's easy enough for bacteria to get in to colonize an area.

In the meantime, she also took my temperature - it was 100.2. I took it again when I got home - it was 99.7. So, I have a low grade fever, probably a reflection of the skin infection.

I am on antibiotics for the next week - maybe two. Hopefully, this will take care of the infection both inside and out.

I feel so much better that L. took care of me. In the end, I have more confidence in her skills to keep infection away than what I witnessed at OHSU in terms of how they take care of wounds. I now have all new dressings. I'm confident the wounds are as clean as possible. And, I don't think I will leak.

It's for those reasons that I still don't really feel like going out in public. I feel too . . . ugly with leaking drains, a bit of an odor, and JP tubes sticking out. Plus, I am tired. It's good to rest, eh?

So far so good

First, I'd like to thank dad for hanging out with me today and for picking Eddie up from school. Things took longer than expected because they were waiting for orders from Dr. K . . . but I didn't stress about it because I didn't have to be anywhere at any particular time.

They used my right arm because the left arm is too close to the open wound. They found a vein fairly easily. Then, they gave me saline, then the premeds (anti-nausea with a small dose corticosteroid). I finally got the Abraxane, then it was flushed, and then I got Zometa.

Two of the nurses I know were there - J, who worked with my sister at one time, and P, who introduced us to cob cottages. I guess P has decided to build a cob wall in her backyard. I told them about Mount Herminator - they laughed at my description and P called me a "Conehead"!! LOL I really like the nurses there. A pretty cool bunch of ladies.

We also had an ongoing discussion of the port. Dr. K doesn't want me to have it. But the nurses do. In the end, they thought my risk of infection was higher because of multiple needle sticks then if I got the port. I'm opting for a P.A.S. port. While many of their patients have chest ports, there are some that have the P.A.S. port in their arm and they love it. None of them have had infections.

So, I get the port on Thursday and then my next Abraxane appointment is the Thursday (the 14th) after.

I colored October's Mandala of the Month - appropriately labeled Yin Yang! - and I colored red spots where the CT shows possible places of cancer. I think colored yellow A's (Abraxane) flowing through the mandala to the red spots and then put them on fire. The A's were "alarms" that called the HT cells (Herminator-2 cells or t-cells) where there were hanging out in the lymph nodes. The HT cells were called to put out the "fires" in the cancer areas. The whole area was colored a spring green with a darker blue on the outside. That signifies healing.

I also finished coloring another mandala by Maureen Frank, the Mandala Lady. It was one I started several months ago. It had roses. The nurses enjoyed looking at the designs in the three coloring books I had and particularly liked some of the colors I used. We had a fun chat about home remodeling, painting, and choosing color.

So, it was a relaxing time at the ol' Infusion Center. Great nurses. Good company. I'm just tired. Stayed up too late last night (midnight) - anxiety and some frustration at the medical team. As my therapist said today, this is why this is why we need electronic medical records!!

I also saw my therapist and my acupuncturist today. Thank goodness for both of them! I think by talking through my frustration with them, I was better able to let go of that negative energy so that I could welcome the chemo so it can do what it needs to do. I'm imagining Abraxane sending the alarm to the t-cells and the two working together to shrink the areas of cancer.

Thank you's are in order: First, to my dad and my parents for taking care of me and Eddie this past week or so. Second, to the other cancer bloggers and all my friends who are keeping me in their prayers and thoughts! I appreciate it all! And, third, I thank the nurses and my acupuncturist - it's very nice to have more than just a professional relationship with them. I think I would call them friends if they were not part of my medical care team. Well, they are my friends. Fourth, I want to thank Cat who graciously agreed to take on my class tomorrow. I visited her and Auntie Cecilia and Uncle Aakagak today to give her the materials. Uncle Aakagak is really a happy baby and climbing all over things. Reminds me of when I went to King Island with Uncle Aakagak - he scrambled up the right side of Kuuk so easily - with seemingly no effort. Scared the heck out of me! Cat, that's why Baby Goo likes to climb! You need to start him early on rock climbing! : ) And, finally, thanks for Dr. K for putting up with multiple phone calls and questions yesterday. I really needed to hear it straight from him so I could make decisions. I don't like being kept in the dark.

Thank you all again, very much!

What a Great Nurse and Other News

You know, sometimes people tell me that they seek cancer services up in Portland and/or Seattle, as if the service here won't be as cutting edge or whatever. But you know what? I have always made a choice to have my cancer treatment here, primarily because I don't want to have to travel any farther than I have to and also because I do think I get great care.

Today is a case in point - the nurse (C.) I talked to yesterday about the CEA results said that she would be at the Infusion center today and if she had a chance, she'd call me with the CA15-3 results. Well, she called me this morning, after I went to a baby shower.

The CA15-3 was 19.7. I've had numbers below 20 (since August 2008) for nearly a year on that tumor marker test. That eases my mind because I think the CA15-3 might be more sensitive as a marker for cancer.

Here's the history:

Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL
Mar 2 2009 - 17.8 U/mL
Apr 8 2009 - 19.6 U/mL
May 5 2009 - 18.4 U/mL
June 4 2009 - 19.7 U/mL

Remember that anything below 33 is considered normal.

Here's the history for the CEA:

1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL

For the CEA, anything below 3.8 is considered normal!

So, I won't freak out too much yet. The nurse, C., thought that maybe I should go see my primary care doctor about what might be causing the slight coughing/wheezing that I have, to try to get to the bottom of whatever respiratory might be going on.

In other news, I ended up with diarrhea today. I doubled my dose of Tykerb today and another blogger I know would complain of diarrhea with Tykerb. I also had seafood last night - a couple of mussels and shrimp - and I don't know if my digestive system was bothered by that. It's wiped me out today, even though I think I had a good night's sleep. I was supposed to also go to my colleague's house for a party, but I think I better stay home and rest. Sorry, L. & J.!!

And, in other news, the garage sale was okay today. I think we had three cars stop by from 12:30 on, so I don't think it was worth it to have it until 4pm. But Scott and I earned over $100 today. Of course, we have a lot more we can sell . . . we'll see how we do tomorrow! Mom and dad were a great help and they even ran to the grocery store for me because of my digestive problems! They're great parents, aren't they?

A very big note of appreciation goes to C. for taking the time to call me with the tumor marker results today. I get great, personalized care!