Feels a bit better today

I do feel a bit better today. I even considered taking a shower from the waist down, but my brother got into the bathroom before me. My appetite is not where it should be. I mainly eat yogurt, applesauce, and fruit smoothies. I think I am maintaing my weight.

I had a CT scan on Monday and haven't heard from Dr. K. yet. That means, I think, that there is nothing urgent. I will let you know when I hear.

I have physical therapy soon and later is wound care. I tend to average 2 appointments a day.

More news when I hear.

Not much new

This week, I have had a lot of appointments - wound care, acupuncture,physical therapy, therapy, and home visits with two of Eddie's middle school teachers.

The hone visits went well. It will be hard forEddie the first month or so, but he eventually get the hang of it.

The arm radiation wound is leaking a lot, but part of that may be due to the fact that physical therapy is working to move the lymph fluid upmyarm. If it drains out, that is fib with me. She is also streching my right arm and I started some strength training. I think that is why my right arm hurt more yesterday.

Constipation is an ongoing problem, but my acupuncturist, Brodie, gave me some more herbs that will helpfully help.

I think I have made the decision. To go with COBRA until the end of the year. Then I will move to OMIP(Oregon Medical Insurance Pool). OMIP doesn't cover acupuncture and has a $1500 deductible on top of the premium, so it ends up being a few hundred more than just paying COBRA and getting reimbursed for acupuncture. Acupuncture is very important to me and would like to keep insurance for a few more months to get me over my current pain/constipation/energy hump.

Hope everyone is well!

Updates on Wounds and Medical Appointments This Week

Let's start with the wounds in the armpit: I think the skin has continued to grow in (slowly but surely) in the main area. There are four other spots that aren't healing but aren't growing either. I suspect that there's cancer, but now that we've lessened the tumor load in my body, maybe my immune system and the other systemic treatments (Tykerb/Herceptin) can begin shrinking them.

The chest wound, where the tumor was removed, is draining fluids. But already, since Thursday, the drainage is less. I am wearing a JP drain, but expect to get that removed on Wednesday as there was only 15ml of drainage in 14 hours.

In place of the chest tumor, there are incisions - and stitches - about 2-3 inches long at the top and at the bottom where the surgeon was able to close the opening. He also put in a "stent" which I thought meant something like a "shunt" - a metal tube or something. But what it is is a wad of gauze that is pressing down on the wire mesh and the skin graft in the hopes that the skin graft takes. He expects that about 80% of the graft will take. The stent won't be removed until July 5th or so. I am on antibiotics for 10 days so hopefully an infection won't set in. Already the drainage there is less although there had been a lot of blood and fluid there for a few days. I changed it last night and I think I found the right combination of getting the right amount of gauze/ABD sponges to catch the drainage and keeping the areal coverage of it relatively small. I already think it sticks out less then uniboob, so it's a huge huge improvement.

On occasion, my right thigh, where he took the skin graft, hurts, but that's only when I've been immobile for awhile. If I keep moving, it stops bothering me. I should change that dressing as it is already sticking. I might get brave enough later to replace it with the transparent suresite dressing - which doesn't stick when there's fluid.

As for the lymphedema in my left arm - I don't think it's getting any better. It's hard to wrap up high enough on the left arm to shrink the largest fluid retention - nearest the armpit - and sometimes, I don't wrap tight enough. I am already tired of the damn thing, but it is what it is.

I have 13 medical appointments this coming week. Five for radiation, two with wound care, two with physical therapy, one with the surgeon, an appointment for Eddie, one with acupuncture, and then an infusion with Herceptin/Zometa.

But given all of that, I feel really hopeful. Even my surgeon yesterday said that I am making him a believer in alternative and immunotherapies. As far as we know all the gross/large tumors are out of my body. Now on to the business of keeping anything else from growing.

Thank you all again for your continued love and support!

Medical Appointments This Year aka Why I need to go on disability

This morning, I figured out how many appointments I have had so far this year.

There have been a totals of 168 days this year.

I have had 110 medical appointments, NOT including some for Eddie.

There have been 24 weeks. For four weeks, I went to urgent care to get my dressing changed on Saturday and Sunday. So I had appointments on 4 weekends or 8 weekend days.

If you take out the other weekend days (20 weekends x 2 days = 40 days), there have been 128 days when I could potentially have appointments.

I was in Hawaii for 9 days.

And I have been in the hospital for 12 of the days with surgeries, which has NOT been counted in the total of 110 appointments. So if you count the hospital days, I had appointments/medical care on 122 days. In other words, almost one appointment a day.

Criminy. No wonder I haven't done much work this year!

Appointments and Errands and Work Emails

I had three appointments today and then lunch with a friend and colleague.

The wound care nurse said that, under the circumstances, the wound and the growth are doing okay. The growth actually shrunk to about 17 x 13cm. She also said that, in her experience (and she hasn't had many patients with cancer), growths/wounds like this have very compromised tissue and it tends to bleed easily. It was bleeding awhile ago, but the powder seemed to keep it from bleeding. Lately, I've been using turmeric and she thinks that it is keeping it from getting infected and from bleeding. In other words, the wound/growth could be worse.

I also saw my acupuncturist and she treated me for the fatigue and anemia and pain in my armpit/shoulder mostly, but since I am also working to remove my ego from many sources of frustration and stress, she put in a couple of needles at "constitutional" (basic DNA level, which is pretty deep) points. What was interesting is that after she left so I can just sit there, one point, my third knuckle on my left hand, just started throbbing. That's the San Gao 4 point, which has to do with my essential self. The funny thing is that there was no needle there. She thought the fact that point was reacting was a good sign that energy was moving to that area to help my body remember my basic DNA (I think), which cancer has hi-jacked. The idea, I think, is for my body to remember my essential constitution (i.e., pre-cancer) and recreate that. So, I had a reaction that she considered a positive step toward my healing.

Lunch with my colleague and friend, K., was fun. I think we're going to put in a pre-proposal with another colleague to continue some work in Alaska. There's some good positive energy there, which was really cool. My issue is that the pre-proposal is a quick turn-around. We have to submit a 4-pager by April 6 and my surgery is April 1. So, I need to work on as much as I can before my surgery. And, that's on top of edits to an article, my syllabus, figuring out Dropbox, etc. K. and I also had to do a little debriefing from our Hawaii workshop.

Then, it was off to my teeth cleaning. I hate getting my teeth cleaned. But Monday evening, one of my crowns started aching a little. But she didn't see anything of concern. It just might be bruised from chewing a lot of gum or something. And, amazingly, the teeth cleaning was fairly easy and gentle. Usually, I feel like she's poking my gums something awful.

Eddie and I also ran a couple of errands. He started rereading the Diary of a Wimpy Kid books, so we got the last two in the series. He's going through one of those books a day.

Now, I'm just trying to get caught up with work emails. Man, they keep piling up.

Tonight, I'm just gonna watch reruns on TV. And, work a little on my syllabus.

I am enjoying watching things bloom and bud. But it feels like an awfully cool spring to date.

Countdown: 8.5 days and 17 dressings changes to go.

A Good Couple of Days

On Sunday, I used a LePatisserie gift certificate, given to me by a friend and colleague, to buy some yummy treats that I (and my family) snacked on all day. We had a croissant, an almond croissant, a "ganache", and a mixed fruit tart. YUM! I think the sugar, though, woke me up every couple of hours that night. Most of the day was spent doing a little cleaning around my room (filing away papers) and I ran some errands with mom. Plus, I watched some Harry Potter movies.

On Monday, I had to go to a faculty meeting (goodbye winter fellowship! I'm so sorry to see you go!). That signals the loss of freedom as I will be expected to do more service around the department again. Some members of the department spent the first 45 minutes complaining. I wont' say about what; suffice it to say that I think it's a moot point and is not something I want to waste any energy on. We finally got to the business at hand after that.

Then I took Eddie and his classmate to Putters Family Entertainment in Eugene so they could play laser tag. The boys also played in the Arcde and they played mini-golf. I think they had a great time.

Yesterday, Eddie, a friend of mine and her corgi, and I went to Lincoln City. We stopped and walked on the beach in Newport (just a few minutes as it was sprinkling) and then had lunch. Then off to Chinook Winds Arcade, where Eddie played in the Arcade again. He asked to go to their day care center while my friend and I went to the outlet mall (found four shirts, a hood, and a pair of khaki cargo pants for dad for $40). We then had time to spend about 30 minutes at the casino. After that, we went to the beach at Road's End and other than a slight breeze, it was beautiful. The sun was shining through some high clouds and the tide was high. We had a nice short walk, then we stopped at McMenamin's Lighthouse Brewpub and had ice cream - Eddie had a vanilla milkshake and my friend and I had marionberry crumble with ice crea. The dessert was everything I shouldn't eat (other than the berries), but I figured I was on vacation. We got home about 7pm. I was tired, but pleasantly so.

Today - appointments. Wound care nurse, acupuncture, and a teeth cleaning. Also lunch with a colleague and friend. I need to pick up some stuff at work and then I'll take Eddie to Wacky Bounce, where I'll work on my spring term syllabus.

Tomorrow - a CT scan and a visit with my oncologist. Then, work. Maybe bring Ed to Wacky Bounce again.

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!