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.

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!