Updates on Surgery/Wounds and Anxiety/Sleeplessness

The night before last, I think I got maybe 3 hours of sleep. By the time I got up - and talked to my folks - I was weepy. Frustrated. Anxious. Uncertain. Pain in my right arm/shoulder

The anxiety was due to the fact that I was to meet with the radiation oncologist about whole brain radiation. I showed her some info I found. And while she agreed that there are docs who would argue against it until something new crops up, she's in the camp (since it seems my disease is controlled from the neck down), that would want to treat my brain more aggressively so that no more tumors crop up.

I am still on the fence with that decision. But she agreed that a follow-up MRI, to see if anything is there, is warranted. So, I have an MRI scheduled on Monday and then I will feel that I can make a more informed decision.

On the one hand, two of my right fingers and thumb are still numb and tingly. I am a bit wobbly on my feet, but there are explanations for why that is (post-surgery/medications/etc.).It could mean there is still some swelling on my brain, not necessarily tumor growth. An MRI will help us answer that.

As for the anxiety and sleep, the radiation oncologist thought I should have Ativan, but I told her that I still had a bottle of Valium (that I hardly took) from a couple of days prior to finding the brain tumors. She encouraged me to try that last night, so I did. I figured that I got maybe 7 hours of sleep last night and I must say I do feel less anxious - at least, my shoulders aren't lifting as much as they did and my right arm/shoulder are less tense and painful.

I am also taking Tylenol regularly, which also helps.

As for the surgery, about 85% of the skin graft on the chest wound succeeded. It is draining fluids, still. But no sign of infection. There is quite a depression there - about the size of an egg. On the boob side, it's maybe 3/4 of an inch deep and on the breast bone side, maybe 1/2 inch. In other words, a big crater in my chest, but preferable to a draining tumor.

The donor site is nearly healed. The surgeon said that he's never seen anyone heal that quickly. He attributed that to my immune system, but it could also be the antibiotic ointment I used on it daily.

As for the lymphedema on my left arm, the area nearest my armpit has gotten bigger. The physical therapist also noted that it was red and thought there might be an infection brewing. So, I talked the surgeon into prescribing IV antibiotics for when I get my Herceptin treatment tomorrow. IV antibiotics will be easier on my digestive system.

I also saw my acupuncturist, who saw my anxiety and also noted the fact that my digestive system is still not right or healed. So, my treatment was based around that - she said my liver is carrying a lot of heat, which means to me that it's processing a lot of the medications I had in my system. So, to keep things simple, I take the anti-nausea Chinese pills and will take that until I feel my digestive system is more healed.

So, I am better today. (I didn't post yesterday since I felt so yucky.) Still a bit wobbly on my feet, but I am taking daily walks down the hill from my appointments (about a mile). My stomach is still cramping after I eat. But I have the next couple of weeks to heal from all the meds before starting anything more aggressive (if I do).

I have Herceptin tomorrow and Zometa, plus the antibiotic.

I Convinced the Surgeon . . .

and surgery to remove the chest tumor will occur next Thurs June 23. The surgery should only take 1-1.5 hours. I think I'm only in for an overnight stay.

So, here are my reasons:

1) Herceptin, while maybe slowing the growth of that tumor, is not shrinking it either.

2) Because I am due to start whole brain radiation in late June/early July, the earliest I would add a traditional chemotherapy (which MIGHT shrink the tumor) would be late July/early August. In the meantime, the damn thing would continue to grow in small increments.

3) We don't know for sure that chemo will shrink the tumor. If the wound in my armpit is any indication, it might shrink it temporarily (and remember that was helped along by the immunotherapy I received) but then it grew again. By the time I finally got into surgery for the armpit, the damn thing was 15x12cm large. So, if we wait to do chemo for two months, that puts me into late September. That means this tumor would have 3+ months to grow. I think it's grown maybe 0.5 to 1cm in one month. It could potentially be 3cm larger by the time we decide that chemo hasn't worked. So, I'd end up with a much larger wound than I would have now.

4) I don't have any faith that chemotherapy will actually shrink the tumor. I think going on Abraxane, while temporarily helping, damaged my immune cells (those Herminator t-cells) too much, subsequently allowing the armpit tumor and the brain tumors to grow. I still am not sure if my immune system is fully recovered from it. I have more faith in my own immune system to fight this thing, so I want to do what I can to support my own immune system. I once read part of a book that discussed statistics associated with chemo and I ended up thinking that while you might read something like 33% of patients improved (or whatever the statistic), it said that you needed to look at the actually study - and some studies have small numbers of patients, like 10 or 20. I also know other metastatic breast cancer bloggers who have tried all sorts of chemo cocktails, only to have their cancer progress. I don't want to get caught in that trap. It's not that I won't do chemo if I have to - I will. But at the moment, I won't start a traditional chemo regimen for 6-8 weeks. I will only have targeted therapies.

5) So, it seems that now is the time to strike at the chest tumor, which started growing around February (I think). Nip it in the bud. The surgeon knows he won't get clean margins (as did the surgeon up in Portland). So, there will still be some cancer left deeper, like near the bone. But, to me, it seems that if we get rid of the bulk of the tumor now, then chemo might be more effective later, as there will be less cancer cells to deal with. At the moment, it's about 6x5cm. Something like that.

6) The surgeon, Dr. F., felt that it was more movable than it was the last time he felt it.

7) Dr. F. did warn me that I might end up with a bigger wound than I have there now. I reminded him that I had a large wound there for 11 months before reconstructive surgery with the TRAM flap - at that point, it was maybe 12x8 cm? I also said that I dealt with a really large wound in my armpit for months before the April 1 surgery - and even afterwards. But I also said that the wound care nurse said that the fact that the armpit is healing, slowly, but it's healing, is a good indication that this wound might eventually heal. It'll heal better with less cancer there, that's for sure.

8) That area has had radiation twice, so that is NOT an option. And, the tissue in that area has been compromised due to surgery and radiation, so chemotherapies are not as effective as they might be with healthy tissue. That's another reason why I don't think chemo will do the trick with this large a tumor.

I don't want to wait months only to see it grow like I did with the armpit tumor. So, he's agreed to do it. I hope that it is the right decision. But I figure I'd rather have an open wound with a depression in my chest than an open wound with a 2cm protusion. There will be less cancer there, which will help chemo keep things at bay and which will allow healing.

I really want to get rid of this unicorn boob!

A Good Day and an Interesting Observation

Yesterday afternoon, I began work on edits on my chapter on the Inupiaq and Yup'ik view of Alaska statehood. An editor, who really doesn't know anything about Alaska or Alaska Natives, had over 30 comments she wanted me to address. When I got into them, I didn't realize how detailed some were going to be, so I needed to look up additional information. While it took longer, I think it made the piece clearer, especially for non-Alaska experts. But some comments were ridiculous and I would have to say " No, I am not going to add Nything on this because it will detract from the main point". The rest of the comments were just tedious edits. So a job I thought would take 2-3 hours took about 7 hours instead.

Gak! No wonder I hate editing. But it was needed and the chapter is better for it. I finished it after lunch.I am so glad that I was able tom finish it!

Then I went to my friend's graduation party and hung out with them for 4 hours. It was visiting with them all. I even had my first beer in almost three months. Wasn't sure if I could but it was enjoyable. Oh, yeah. It was an Alaskan Amber, one of my favorites like Fat Tire Amber. We sat in lounge chairs on their porch, had a barbecue burger and lots of veggies. Then watched a few people play horseshoes while I sat in the sun. It was a relaxing time. No pressure to be "on". Just chat when I felt like it and observe my friends and their family (lots of kiddos, like 10 or more) when I didn't have much to say. Regaled them some with news of my surgeries and talked about next steps. Several are nurses or work in hospitals so Imlet them see my surgery scars on my scalp.

As for the interesting observation: I noticed the other day that the I was able to move the chest tumor a little side to side. I hadn't been able to do that before as it seemed solidly attached. Today, it was even looser. In other words, I think it is becoming less attached to structures underneath.

I think that it is a good thing.

I am going to try to see my local surgeon and see if we can't get the damn thing taken off. I want to be free of any visible tumors, so I can get to the business of keeping any more from cropping up. It is crazy to be considering another surgery perhaps even in the next couple of weeks, but for some reason, the thought of being tumor free is rather appealing. I just don't think any kind of chemo will shrink it. I should also say it isn't growing, either. It is a pain, though.

What a Day, What a Day, What a Day

And, I made it! I'm tired, but I made it.

I went to wound care first at 8:30am. The area with no skin is smaller by about 1/2 cm - it's now 4cm x 2.5cm, down from 4x3cm on Tuesday. That's good.

She also changed the dressing on the chest tumor. More of the skin has broken down. After I talked to the nurses at the Infusion Center and the wound care nurse, I think I'm gonna try to talk my local surgeon into removing the damn thing sooner rather than later.

Then, I ran over to the Social Security office in Albany to drop off paperwork. There was no line, so I was in and out of there faster than I thought I might be.

Then, off to Ambulatory Infusion to get Herceptin and Zometa. I will have an echogram next week to check my heart as it has been since Feb 2010 since I had one. (Sheesh, I thought I had one more recently than that.) My heart rate is about 90-100 beats a minute, which I think is related to the steroids. The heart rate was also elevated when I was anemic in April. So, they just want to check and make sure everything is okay. I haven't heard yet about the Tykerb. I will call on Monday to see what the status of getting that drug is.

While I was there, I worked on edits to a chapter I wrote last summer for about an hour.

After three hours there, I picked up Eddie - he had an appointment. Then, I actually came home and worked on edits again for another hour.

Then, one of my colleagues dropped off Chinese food for our dinner tonight, which we then promptly took to Eddie's school so he could go to the carnival. I was really hungry when I first got there and was cranky, but once I got food in my belly, I visited with several people, including one teacher whose husband recently died because of cancer. So many of the other parents and teachers told me that they were praying for me and offered support. Thank you!

Right before I left, Eddie went into the dunk tank and got dunked a couple of times. He was having a ball.

I got home about 7:45. A long day. But I made it through. I'm tired, of curse, and happy to be horizontal. My lymphedema arm is a little achey, but less so than the tendonitis in my right forearm.

Life is good. I'm glad I was able to hang with Eddie at his carnival. I feel very happy to have life as normal as I can make it for him.

Happy weekend!