Oh god. Nausea

I still had nausea through the evening and night and this morning. I've been taking zofran pretty regularly and mom and dad got ginger root at the store yesterday and I've had ginger tea twice - a friend of mine sent me some recipes for it - of a way to prepare it. My acupuncture also suggested it, so I figure it was time I tried it. I think it's helping.

But the only medication I had last night was the anti-seizure med - no Tylenol, no Tykerb, no antibiotic. I did take the antibiotic this morning, but will ask the surgeon if there is a gentler one I can be on.

I think since the nausea is continuing that there must be some swelling in my brain. The docs want me to take a steroid for it, but steroids delay healing.

The antibiotic is healing the wounds - and keeping infection at bay - but it gives me nausea.

Tykerb can help protect my brain, but may contribute to the nausea.

I also haven't taken my Chinese herbs last night or today.

My acupuncturist said that I am probably still detoxifying from all the chemicals in my system from the surgeries plus the meds I take. So, my system is overloaded.

I feel like I'm damned if I do and damned if I don't. None of the choices (Tykerb can help prevent brain mets, but can cause nausea; Tylenol helps with pain in my shoulder but probably doesn't help the nausea; some of my Chinese herbs can help my immune system and fight cancer, but I'm afraid I'm giving my body too much so I'm not taking them; antibiotics appear to be helping heal the wounds in my armpit but gives me nausea; WBR can kill any stray cancer cells in my brain but can lead to swelling and nausea) are appetizing (pun intended).

I don't know what to do.

I sorta feel like I need to detoxify my body right now - which to me means to take the minimal amount of chemicals and get over the nausea and get the surgical drugs out of my system - before I do anything else. Then begin adding things again next week, after I'm off the antibiotics. The only two things I don't want to take away are the anti-seizure medication and the antibiotic.

There's a part of me - because of how I've reacted to the WBR with nausea (which may be due ot the meds but maybe not) - is to refuse WBR for yet a few more weeks. I know that increases my chances that a tumor can start growing but I also think that once I get off the antibiotic, I can take Tykerb. I was doing okay with the anti-seizure med, the Tykerb, and Tylenol.

What to do?

Thank You So Much My Friends

My friend Mary and her husband David have been touring around in Spain and Portugal and they visited the Fatima pilgrimage site today. Mary dedicated a burning candle to me and also found wax boobs that will be, I presume, burned by a priest at some point, which is a burning of a diseased body part. Here is the link to their post on the subject:

Fatima

http://foodvengeance.blogspot.com/2011/06/ex-catholic-on-pilgrimage-to-fatima.html?showComment=1309301703487#c3497426204117932192

Hit a Breaking Point - Will Take a Break

After my radiation treatment yesterday, and after taking my antibiotic, Tykerb, and the anti-seizure medication, I ended up with nausea last night. I finally took Zofran about midnight, then at breakfast and then right before lunch. I am able to eat now, but I am frankly overwhelmed.

I called the radiation oncologist and in the end, she agreed that I am overwhelmed and need a break, although it is against her better judgment.

Of all the side effects, I can't handle nausea. I just can't. She said that Keflex, the antiobiotic, is notorious for nausea. But I told her about my wound care appointment today - the four smaller areas (of about 1cm each) that hadn't been healing and two spots that had opened up recently - have actually healed in the last week. Since Thursday, I've been on antibiotics. The largest is now 0.8cm x 0.5cm where it was 1cm. Only one area s slightly raised; the others look like there is some skin tissue forming. The largest area has healed in about 1cm in width on the anterior side - about the same in the posterior side (about 4cm long, but 1cm wide on the anterior side and 2cm on the posterior side).

So, this is an argument that those four little areas were actually areas of infection so the antibiotic is probably helping. In case that is really the case, we don't want to shorten my course of the antibiotic.

Also, the radiation oncologist said for the nausea, they would want me to take the steroids again. I really really don't want to do that. She then said that the steroids would delay healing wounds. I now have three major open wounds - the armpit, the skin graft site, and the chest. So, she agreed that now would not be the time to start steroids again.

I also decreased the dose of the antibiotic (from 3 per day to 2) and also didn't take Tykerb this morning. I want to start with as clean a plate as possible so now it's just the antiobiotic and the anti-seizure medication that I'm on. Once I'm over the nausea - and the diarrhea (will start Probiotic for that), I plan to start Tykerb again, hopefully by later this week for its protective effect on my brain. If I get nausea again, then I know it's the medication combination that's doing it.

I will have an appointment to talk to the radiation oncologist again on Monday - so now I can just spend the next few days recovering from the latest surgery and the medications.

Three surgeries in six weeks is a lot. Cancer treatments on top of that is a lot. I reached my breaking point and need a break and to give my body a chance to recover.

Not sure when I may start radiation again, but if and when I do I will find out if radiation causes it. If not, I will know that that the nausea I feel is a result of still trying to get all the medications from surgery and the antibiotic and such out of my system.

A break will allow me to sort that out some more.

I'm strong. But not that strong. A break is a welcome respite.

Pictures - My Turban Bandage, Flowers from the Yard, and Wings and Waves

I am going to upload a bunch of pictures - they may be in random order. But they show my turn bandage (the white one that I had to wear for a week and the colored design I created to cover the white tape), flowers in my yard (my favorite irises and now the lovely roses and one poppy), and Eddie at the new waterpark north of here . . . also at his school carnival and his school musical.  Enjoy!

My Brain Got Zapped Today

I just got my brain zapped. Yep, whole brain radiation started today.

I was apprehensive beforehand. But talking to people when I got there - asking about side effects - calmed me down. They had to do a "set-up" first to be sure I was positioned correctly and that took a little bit of time. At first, the tech didn't say what she was doing when, but when I asked her to tell me what she was doing and why, I was able to calm down. I thanked her for telling me.

Then, once the doc okayed the set-up, I got zapped. About 20-30 seconds on each side. Fairly quick. I don't even need to take off my contacts. Most people only get scalp redness (alleviated by aloe vera gel) and some fatigue.

Already got the fatigue but that seems better the more days I have since surgery. The social worker said, "gosh are you ready to start this today?". When I said that because my family had already scheduled time at a house at the beach - July 16 - and that this was the first day the neurosurgeon released me to start radiation - the 14 scheduled sessions have to begin today, she understood. She then said, "boy you're strong!"

Yeah, I guess I am. I get a lot of support at home and that really really helps.

I am more tired today than yesterday, though, as I couldn't relax my right arm and shoulder. I think it was because I spent a few hours gluing tiles to my most recent mosaic. It's better now, though. I do have some increased swelling in the front of the right shoulder due to the surgery and the nurse said that I could probably start taking Ibuprofen if I wanted. I guess I should check with my docs first, to make sure it isn't contraindicated with the anti-seizure medication. On second thought, I think it is. I do think I got some sleep, finally, and my arm relaxed partway through the night. I'm not going to use that arm much today so that I can get a better night's sleep. I will, however, try to stretch it more.

Tomorrow, I have four appointments - wound care, physical therapy, acupuncture and then radiation.

That's pretty much my life with wound care twice a week, physical therapy twice a week, acupuncture once a week, and regular therapy.

I feel so much better now that WBR (whole brain radiation - for ease of typing, that is the abbreviation I will use henceforth) has started and I know what to expect.

Had some diarrhea, too, today, but as that is a side effect of three of the prescription meds I am on (anti-seizure Keppra, anti-cancer Tykerb, and an antiobiotic Keflex), it is to be expected. I took an Imodium after breakfast and I feel better now. It seems that one 2mg Imodium tablet lasts me two days. So, tomorrow should be better.

Yes, I have a lot of things going on - treatment, side effects from treatment, treatments for the side effects, wounds, etc. - but it could be so much worse. I watched Extreme Makeover Home Edition last night - I don't have it nearly as bad.

And, yeah, I finally got hold of a real person at the Standard about my short-term disability claim this morning. While in radiation, they called and said that they are processing my claim and should have a determination this afternoon or tomorrow. Turns out  my old analyst was on vacation so I politely but  firmly requested another one as I have had much difficulty getting hold of her. It pays to call and follow up on things like this. Nice to know that I should know something by tomorrow morning.

I am on a different computer than my iPad - so I will post some pics that I've been promising for awhile! Definitely feeling better this afternoon than this morning. I promise I won't overdo it, though!

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!

Some Good News . . . But With a Catch

I received a letter yesterday from Social Security. I have already been approved for social security disability.

Yes. That's right. Three (or was it four?) weeks after I applied.

The catch is that I need to be "disabled" for five months before I start receiving disability benefits. That means I will be eligible for benefits beginning November 2011 and will get the payments the month afterwards. For me, that'll be around Christmas.

That leaves some questions about insurance. Even though I am currently disabled, does this mean that I have to wait until November to apply for something like the Oregon Health Plan? If so, my current coverage ends at the end of September, so I will either need to have something else in place and/or pay COBRA out of pocket for October/November/December.

There's also a relatively new Oregon insurance program, too, that I need to look into.

So, tomorrow, in addition to starting radiation, I will have to make phone calls about what insurance I am eligible for. I'll call the state, maybe my own human resources department, and the social security office.

I also need to verify that my private disability insurance (which I pay for but which is offered by the state) benefits won't be deducted from social security.

Speaking of private disability insurance, I called my analyst (or tried to) last Monday and Tuesday. I tried three times on Monday; twice I decided to try to wait on hold, but after about 15 minutes each time, I gave up. I called again on Tuesday and had to press so many buttons to get to a real human voice. That person tried to get hold of my analyst and also looked up my disability claim. My old claim (from April) was closed and there wasn't any evidence in the computer of a new claim. The "real voice" tried may analyst and got her voice mail (which I also got several times) and said she'd leave a message for her to call me back. I didn't get a call on Wednesday, and then, of couse, I was in the hospital Thursday and Friday. So, I need to try again tomorrow. My analyst, Sokunthea at the Standard INsurance Company, told me on June 7th that I did not have to do anything and that she would send my paperwork in for a new claim. If, by god, she hasn't done that, someone at the Standard will have hell to pay.

Standard was so fast with the April claim, so the fact that I haven't heard anything by now is disturbing. In the meantime, I will only get a couple of hundred dollars on this check, which is not enough to pay the monthly bills. Luckily, I have some in savings and can use other sources to cover things until I do get a real person on the line to put in the claim and if they work as fast as they did in April, I should get my four weeks of disability payments within a couple of weeks.