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?
Wednesday, June 29, 2011
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.
Tuesday, June 28, 2011
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:
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.
Monday, June 27, 2011
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!
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!
Sunday, June 26, 2011
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!
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.
Friday, June 24, 2011
The surgery to remove the chest tumor was yesterday.
The good news is that the surgeon said there was a "plane" of good tissue under the tumor and that cancer was not in the sternum. The other good news is that he was able to pull enough good tissue (I think the TRAM flap from reconstruction) so that the skin graft is only about 3cm in circumference. He thought it would be a lot bigger.
So good news all around. However, the nausea stayed with me until partway through the night. It is a lot better now. Not sure if I will be discharged today or tomorrow although right now, I am already readynto go home. Sometimes talking to strangers about my problems and history is just too exhausting.
Hmm, I think I will change my own dressing in my armpit. The nurses here are busy. I will finish my jello first and then get it all ready.
Thank you all again for your continued support!
Wednesday, June 22, 2011
It was a good day today. It was a bit of a lazy morning, then I sorted through Eddie's and my clothes to get rid of stuff we won't wear anymore to take to Goodwill. I also sorted through linens and blankets, too. I wanted to put labels on stuff in the garage to sort them into a dump pile, a garage sale pile, and a Goodwill pile, but ran out of time.
I then went to my office to pick up some articles and stuff so I can work on my blogger analysis article - some research on narrative medicine and such. Then I talked to my supervisor and was reassured that my decision to go on disability (at this point, temporary for the next year) was fine with her. Then I told her my ideas for things that I had to drop last month - things that I could pass on to others or what I wanted to continue for myself.
Then I talked to our school's accountant/assistant (formerly our office manager) about my grants and she informed me that she and another colleague intended to come to my house today to clean our our gutters, but my colleague had a last minute visitor and couldn't make it. Then it turns out that my colleague's 20-year-old son overhead the whole conversation about the gutters and informed them that he would come over in the next week to do them because (and I quote), "I don't want to see two old ladies up on the roof doing it". Wow! Totally unexpected. Thanks, S.!
Also, my supervisor and the accountant say that there are plans afoot to either do more yard work or to paint the house for us. Wow again! I feel so very fortunate to have such great colleagues. I should also say that a colleague's husband came over today to help my dad in the yard - he trimmed the shrubs in front of the house and hauled dirt for dad. The yard is really starting to take shape. Thank you, A.!
Then, it was off to see my therapist. I was apprehensive because I wanted to talk to Dr. K about my making decisions without consulting him, plus concerns about the areas in my armpit that aren't healing (the smaller areas suspected of either infection or cancer). We had a good discussion and it helped me to clarify exactly what I wanted to say to Dr. K.
Then it was time to see Dr. K. When I got in to see him, I said that I know that I made a couple of decisions to do the last two surgeries without consulting him. Part of the reason for not doing so was that he was out of town and also that I was afraid he'd talk me out of it. I also said that I hoped that making decisions like that wouldn't harm our relationship. I teared up a little from anxiety, but then he reassured me, "Don't worry about that [making decisions without me]. Those decisions are very much in keeping with the way that you make decisions." In other words, I didn't surprise him.
I proceeded to tell him that his comment about Christmas made me sad at first, but then it pissed me off and his reply was, "Good!" I also said that I thought he was trying to manipulate me to continue treatments sooner than I wanted and he just smiled. I just smiled back. He also said that sometimes, physicians have to be realistic with their patients - and in my case, I do need to make some preparations in case I die sooner than I think I will, particularly get my will prepared, etc., which I have been avoiding because I don't want to think about it. But best to be prepared.
So, then I showed him some of the research I found (namely, the piece about survival rates and brain mets) and then made my case for getting the skin mets under control. I told him about some of the things I found on the her-2 bulletin board at breastcancer.org (I think) regarding skin mets. I told him about some other options, like topical treatments, testing my tumor's biomarkers/DNA?, and TDM-1.
Of all the options, he seemed to like the TDM-1 and said that we needed to get me into that clinical trial. So, I told him that Genentech has an application process by which he applies to be a PI for me on an individual use basis and he said he'd be happy to do that.
I was pleased with the visit. It seems that Dr. K and I understand each other. He supports my decisions, promised to look into some of the options I presented, and also to try to get TDM-1 for me. I'll see him again after whole brain radiation - and our mini-vacation to the coast.
I have been tired all evening though. It was an emotionally draining afternoon, but it was a good one. I feel that things are moving forward as they should be.
Surgery tomorrow. A good thing, too, because the chest tumor started bleeding a lot last night. Luckily, the nurse gave me a powder that clots the blood; even so, there is still some underlying leakage. I didn't change the dressing tonight (I changed it this morning) because I was afraid it wouldn't stop. I'll let my surgeon deal with it tomorrow.
Time for me to turn in. I'll write you all on the other side of surgery! Wish me luck for no complications like infections and too much bleeding. I appreciate all of your healing thoughts, energy, and prayers!
Tuesday, June 21, 2011
Today was absolutely beautiful in the valley. And I felt good. I had at least 7.5 hours of sleep AND I didn't have diarrhea - thanks to the Immodium. So I had plenty of energy to take Eddie and his cousin - excuse me, I didn't take Eddie, but I joined my son and nephew to the new water park, Wings and Waves, located about an hour north of here. My brother Scott actually drove and supervised the boys since I couldn't go in the water because of my wounds.
I will say that I think ALL the boys had fun. I think my brother surprised himself. I enjoyed watching them, although at times, I was too hot. But it was worth it to see the smiles and to watch all three guys so active.
I actually wrote about 800 words on an article that is due July 1. I am only about 25% done, but it was a great start. The hard part will come next as I need to research some information.
I also worked on some puzzles.
Two strangers asked me about my compression wrap. I just replied, "They took some lymph nodes, so now there is swelling. This wrap is trying to get rid of the swelling." then I didn't volunteer any more info. One man was a Viet Nam vet and his arm was very scarred misshapen. The other man said his wife broke both her arms in three months. I just smiled and said I hoped things were better now.
We came home to a cooked meal - thanks, mom!
I am now officially tired, but it is a good tired from having gone out today. It feels good!
People who read my blog regularly would generally agree that I am a positive person - mostly looking at the bright side of things.
A person that I don't know (but whose brother I do know and really like and respect) commented on my first post yesterday (about my anxiety and worry) to "stay positive". I will admit that it hit a raw nerve because I was, in fact, not feeling positive yesterday. I realized, though, that she was well-intended, so I can't get too angry or upset at her comment.
I can, however, respond in a way to help others reading my blog about how to respond to my posts that are less than positive.
Barbara Ehrenreich (who wrote "Nickle and Dimed" recently released a book called "Bright-Sided: How the Relentless of Positive Thinking has Undermined America". I will admit to not reading the book, but perhaps I shall. I think, though, that perhaps she has a point. This relentless to "stay positive" all the time forces people like me to mask any negative feelings we might be having - to put on a happy face to make it easier for other people and ignore our own needs.
Without having read the book, my guess is that Ehrenreich might be saying the same thing - as a society, we walk around in public as if everything is okay, when in fact it isn't and that forces our society not to address some really pressing needs or even to ask for help when we need it. It also forces us to pretend as if there is nothing wrong.
My acupuncturist, though, has long told me that I should, in fact, express my emotions whenever I have them and not bottle them up inside. Three years ago, I broke a bunch of plates (and had acupuncture and reiki) to release a lot of deep-seated and long-held anger - from hurts long long ago. I had repressed that anger and needed to let it out. Repressing it leads to dis-ease because you are not acknowledging it and pretending that all is well when in fact it isn't.
So, since then, I've become better at expressing my negative feelings when I have them. I don't want to hold on to them. They need to be released. Writing about them helps me release them so that they don't stay in my body. I need to express those negative feelings. Once I release it and then figure out ways to address whatever is making me anxious or worry or depressed, I feel more in control of the situation. And, that makes me feel better.
Your task, as readers of my blog, is not to try to fix me. Rather, it is to continue to offer support as you all do, and to acknowledge that there will be days when I am not my usual, sunny, positive self. And, that's okay. I can't always pretend that all is well with me all the time. In fact, there is a lot that is kinda crappy. I don't tend to dwell on it because it is what it is. I do as much as I can - and get the help of my medical care providers - to make whatever it is better. But it's a slow process.
So, continue to send me your positive energy, prayers, blessings, etc., because it does help. But please please, don't tell me how to feel or give me commands (i.e., "stay positive"). Everyone, and I mean, EVERYONE, feels negative feelings. Don't repress them. Express them. Get them out of your system and don't hold on to it. Once you do, it's easier to get back into a positive state of thinking. I know, myself, that I have a choice about how I feel. I generally choose to be happy. But there are times that I am worried or anxious or down. I am entitled to those feelings when they happen and I will continue to express those feelings.
I know the power of positive thinking. I have said before and will say again, that I don't believe cancer will survive long in a happy body. You other cancer survivors, you know how I feel; just acknowledging that you do understand helps me in a lot of ways. I appreciate that support and understanding, in the good days and the bad. I LIKE being happy and will do whatever I can to turn around the negative feelings, but I will have those, too. I have strategies to turn those negative feelings around quicker. I do that because it helps me, not because it helps you. I'd rather be happy. But there are times when I'm not and you, as readers, have to accept that, too.
Thank you for your continued support! Keep sending the happy vibes! : )
Monday, June 20, 2011
I called my surgeon's office and alerted them about the fact that the chest tumor is bleeding, so I went in to the lab and had blood drawn - and a "type and cross", which needs to be done if you need a transfusion. They double-check your blood type and other antibodies so they can match your blood type to their available blood. So, now I feel better that if I need blood during surgery, they have the necessary information to do so.
I also had a long conversation with the pre-op nurse today and asked about how to clean with Hibiclens. I feel more prepared now about what to do prior to surgery on Thursday.
I also talked to a nurse at my oncologist's office about the diarrhea since it was worse today and extended into the afternoon. I am now taking Imodium and am on a diet that is only easily digestible foods - no fresh fruit and veggies, etc.
I saw the physical therapist, too, today. My arm is about the same as it was the day after I started the compression wrap. I have a couple new strategies for wrapping. She did note, however, that the area at the top and under the arm (nearest the armpit) was 2cm bigger and seemed warm. That indicates inflammation, which might either be my immune system fighting an infection - or like the "inflammatory flare" I had after the Herminator cell infusion last year. She did say that if it was an infection there, I'd feel more pain, which I don't. So, we're just going to watch it.
I should also note that the area around the chest tumor is more red - and some spots are darker. The physical therapist also saw that it seemed redder. So, there might be inflammation there as well. I noted that it also seems bigger so I tend to think it's acting like the left armpit, which became more inflamed after the Herminator infusion.
I think both signs of inflammation are my body's attempt to fight the cancer with whatever Herminator cells I might have. I think the Tykerb is causing the inflammation. And, that's a good thing. I guess I think that it's my immune system fighting the cancer rather than a bacterial infection because I don't have a fever or feel otherwise sick.
I am feeling very tired even though I got about 7 hours sleep. Probably a combination of lack of sleep over the past week in combination with the diarrhea - lots of diarrhea can lead to fatigue.
I am drinking lots of fluids, though. I don't want to get dehydrated on top of everything else!
One of my grad research assistants stopped by today and brought lunch. We thought we might go out to lunch but with my reluctance to go out in public, she agreed to come over. I gave her some work to do for me.
I made my phone calls except that I couldn't get through to the disability insurance company "We apologize for the wait. We are currently experiencing a high volume of calls." blah blah blah. I was on hold with them twice for 15-20 min before I gave up.
I am hoping I get a good night's sleep tonight and that the Imodium helps because I really want to take Eddie and his cousin to a water park that just opened up north of here. I think it's important to take him out and about. My brother will go with me to help drive and to go into the water with the kids as I am unable to because of the wounds.
I feel much better now. Did things to relieve my anxiety and worry; I have my grad student working on some stuff for me (Thanks, R.!); am doing something about the diarrhea. Thank you for letting me complain. I feel better now then I did. And, thanks, R., for bringing lunch by!
I have found myself very reluctant to go out in public in the past week or so. I've thought about this in the last day or so and I think I know why.
The neurosurgeon shaved my head last week - to even out my hair - so I'm back to wearing hats.
I also wear a compression sleeve on my left arm.
Then, there's unicorn boob (chest tumor) that sticks out about 1 to 1.5 inches near the center of my chest - it sticks out father than the TRAM flap.
And, then, there's the diarrhea that seems worse in the morning. As I type, my fingers are a bit shaky.
Finally, I have been preoccupied since Friday about skin mets - I think that the areas that aren't healing have cancer cells in them preventing growth. So, I've been doing a little research trying to figure out what I can do post WBR (whole brain radiation) to get that under control as I want the wounds to heal.
I am really sick and tired of wounds. I have two of them right now.
For some reason, the compression wrap seems to bring the most questions from strangers. With my friends and colleagues, I just have to say, "I'm wearing this so that I can decrease the lyphedema". But with strangers, it invites more questions about why I have lymphedema. On Friday, the clerk at Freddies then went on to tell about her cancer scare and how she's got to go in for a biopsy soon - it wasn't breast, but another organ. I don't want to talk about or comfort someone else right now. I'm too preoccupied about what's going to have to happen next.
My dad has told me twice not to worry too much into the future - just get through this week's surgery and the WBR beginning next week. But I sorta feel like I need to look up options so I can bring them to Dr. K on Wednesday. I want to be prepared for the next leg.
I am so preoccupied that I haven't felt like working on mosaics or the blogger analysis. I am also worried about getting another infection on the chest tumor site after surgery - I am to shower with Hibiclens Wed evening and Thurs morning, but I can't shower because of the wound in my armpit. So, I need to talk to a nurse about how to adequately clean (because while I showered the night before the April 1 surgery - or that morning, I only did it once and I don't recall really using that stuff very much, so I'm afraid that's why I ended up with such a huge infection afterwards). The chest tumor also bleeds when I change the dressing, so I'm worried about needing a transfusion.
So, I guess I'm full of anxiety and worry. I will call the surgeon today about making sure they are prepared for a transfusion. I will call the admitting nurse about showering with Hibiclens. I need to call Disability and see what is going on with my claim, I need to change an appointment and preregister for the surgery.
Once I make all these phone calls, I hope I can settle down and do something more positive and productive.
Oh, one thing I found about the skin mets - I will probably have to do a taxane. I found a bulletin board where someone posted a Japanese study that included a drug that I've not heard of but is an estrogen blocker with paclitaxel. I think there were only four treatments of the latter and 120 days of pills with the former (called toremedine, I think), but in the case they treated, the skin mets disappeared and stayed away from the woman for two years as of the writing of the article.
Writing about it all helps. I don't mind visitors coming to visit me at home. I just don't feel like going out in public and talking to complete strangers about what's going on with me. Maybe once unicorn boob is removed, I'll feel more up to doing something outside the home.
Sunday, June 19, 2011
I don't know how many times I've read "The Lord of the Rings". I always imagined myself as Frodo - the little person who somehow does what the great people can't do and beat the bad guy. I think that's why I like the Harry Potter series, too.
Yesterday evening, after the yard work party, we watched the third Lord of the Rings movie as it was on TV - The Return of the King. Then, I posted on Facebook that I always imagined myself as Frodo and that cancer was "The Ring of Doom". I visualized throwing the damn ring (i.e, cancer) into Mount Doom and melting away.
But in the middle of the night when I couldn't sleep (some achey arms - too tight a wrap on the left arm and a tight right shoulder; plus some worry as I thought I found another nodule in my left armpit which I now think might be scar tissue), I got to thinking that there was one important difference between Frodo and me.
At the end of the story, he goes on the ship that takes him to the sea. He finds that he can't enjoy the Shire anymore because of all his hurts and struggles. I thought about the scene where the four hobbits, who fought in the war, were in the pub watching all their fellow hobbits laughing without a care in the world. They exchange knowing glances that these other hobbits are still innocent of the evil that exists in the world.
The big difference is, though, that even though I've gone through a lot, like Frodo, I would have to stay that I've rediscovered the joy of Shire - that innocence and love of life that children have. I used to think, in my 20s and 30s, that I needed to put away childish things, like innocence and be an "adult". But then, traveling around with good friend of mine in New Mexico, P., I'd watch her giggle with delight as Mesa Verde or Acoma Pueblo and I realized that why is it that we need to put away childish things? Why can't I take joy and giggle and see something I've not seen before? Why can't I color mandalas or create mosaics? Play with color and design? It's fun! Why not have fun?
So, that's the big difference. Frodo couldn't enjoy his world, but I think there is much to do, much to enjoy, much to giggle about yet. I'd rather dwell on the sweet smelling roses then about the evil. As I said before, if we all concentrated on what's good, maybe the world would be a better place. Let's all continue being children, okay?
Thank you again to everyone!
Saturday, June 18, 2011
Wow. I would have to say the work party was a huge huge success!
A huge thank you to Karen, Shannon, Frederick, Alex, Joan, Henk, Elaine, Nancy, and Mike for all of their hard hard work.
The beds were weeded.
The front walk was weeded.
The grass was removed from the bushes near the fire hydrant.
The shrubs on the side of the house were trimmed.
Two new beds were built and an old bed with rotted wood sides had the wood replaced.
Dirt was hauled to fill the beds.
Debris was removed from the raised garden area.
My meditation area was weeded.
Everyone said they enjoyed working with other people - they visited. Two people discovered they knew people in common.
They only ate about half the food I bought, which means we have plenty for dinner.
Wow. It looks great.
Several said they want to come back and work on other projects - one even said to organize another work party.
Wow. I am humbled by all the help.
It is much much appreciated. Thank you everyone! I am so blessed to have so many people willing to help. Thank you!
When I changed the dressing on the chest tumor last night, it seems wider, not really longer. But it seems that there is more necrotic tissue on the top layer and it was bleeding some.
I can't wait to be rid of the damn thing. I'm not sure if my concoction is helping or hurting.
As for the area where we're trying to grow skin - it's a bit smaller from Tuesday - about 4x2cm where it was 4x2.5cm on Tuesday. So, some improvement.
The three little areas where there is either an infection and/or cancer - they haven't healed more but they also aren't any larger - they are 1cm in circumference. The wound care nurse put silver nitrate on them again. If it is cancer, let's hope Tykerb can get to those spots and kill the cancer so the damn areas can heal.
Since I didn't sleep as long as I wanted Thursday night, I was pretty tired Friday afternoon. While Eddie played in the backyard, I read a book - "Water for Elephants" - loaned to me by a colleague. I was able to finish the book yesterday evening. It was a good book - seemed a short read, though. As an anthropologist, I enjoyed the inside view of circus life circa 1931. I spent a lazy evening resting and ended up with maybe 7 hours sleep last night.
It's cloudy and cool at the moment, which doesn't bode well for our yard work party. Let's hope it warms up! Three different wweather sites call for rain most of the day, showers this morning with sun breaks this afternoon, and the third, cloudy through the morning and early afternoon with showers starting again about mid-afternoon. Who knows? Wish us luck!
Friday, June 17, 2011
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!
We will start working on the yard tomorrow at 11am. As I said, people can come and go throughout the late morning and early afternoon.
I would appreciate knowing who will be here so I can get enough food and drink. And also so we can prioritize what needs to be done first.
Also, please contact me if you need my address. I won't put my address and phone on this post for obvious reasons.
Details for Yard Work Party:
June 18, 2011
11am to ?
Tha k you so much for whatever help you can give us!
Thursday, June 16, 2011
I started Tykerb today. I've had it before with hardly any side effects - a tad bit of diarrhea until my body gets used to it. Some white zits on the face, but otherwise, I tolerate it well. But I wasn't sure how it was going to interact with the anti-seizure medicine (which also, coincidentally, has diarrhea as a side effect).
Before bed and throughout the night, I was anxious about taking it. I want to take it so I can start taking care of any cancer cells in my noggin - and in my skin - but anxious about potential drug interactions.
I was also anxious about my decision to do the surgery next week, not sure that I was really making the right decision.
As a consequence, I only got about 4-5 hours sleep. I was tired all morning. I took Ed to school anyway and then got the oil changed in my car. But I did have some diarrhea and felt a little shaky as a result.
Then on my way home, I got a call from Eddie at school - he apparently needed something I thought was already graded and I put it away, so I had to run it to his school.
Then I saw the radiation oncologist. I was so tired and anxious that I admit to being weepy with both the radiation nurse and the radiation oncologist. The nurse said that my weepiness was to be expected and that my anxiety was warranted. But she also added that I did look really well, under the circumstances. My heart rate was still high as was my blood pressure - either still getting the steroids out of my system and/or withdrawing from them. She was very reassuring.
The radiation oncologist came in - and either she or the nurse (I can't remember now) - and they said that at their morning staff meeting, my name was mentioned and I guess it was generally agreed that I had made the right decision to do surgery next week. She understood the reasons - especially that the damn tumor was so visible to my own eyes and she said she might make the same decision to do the surgery so she wouldn't have to look at it anymore. She also said that I was "strong-minded" and that was what a lot of people admired about me and how I take charge of my own care.
I told her about the research I found about brain mets - that people who stay on Herceptin actually survive fairly long after a diagnosis of brain mets as long as the cancer is controlled below the neck.
She was also happy that I chose to take Tykerb for its preventive effect on the brain. I will be able to stay on Tykerb through the surgery. She was going to check and make sure that I could stay on it through radiation.
After some discussion, we decided on 14 more treatments of radiation as she can deliver a smaller dose. If I were to only do 9 or 10 sessions, they'd have to do a larger dose, but research has shown that there can be some cognitive defects in the long -term (years later) and since the research shows that it is possible that I will be alive a longer time than Dr. K said I might, she wanted to opt for the smaller dose. She also assured me that everyone admired how I continued to live my life - doing fun things and working and all - with everything I've been through.
I won't be prescribed steroids unless I start getting nausea or other symptoms that indicate that there is increased swelling. YAY!
We decided that we'd start the Monday after the surgery - beginning June 27 - and doing 14 treatments. Just in time for us to go to the coast the next week, where I can recuperate.
So, I get another week to recuperate from everything that has happened thus far and adjust to taking Tykerb (I see more yogurt in my future), then surgery, and four days later, I start radiation. Three weeks of that and then a week at the coast.
I received hugs from the nurse - I think the doctor, too - and one of the radiation techs. The doctor's son is the same age as my son and we talked about how both boys have recently discovered laser tag. I told everyone we were taking my son to Chuck E. Cheese to celebrate his last day of school. Eddie and I have gone there the last 2 or 3 years and now, as Eddie says, it's "tradition", so he really wanted to go.
But since I don't quite trust myself to drive long distances on my own, I invited mom and dad to go with me. They went to the mall and shopped a bit, while I read a book ("Water for Elephants" that I borrowed from my colleague, B.), and Eddie used all his tokens. A huge thank you to dad for driving. I think it was nice for all of us to have a change in scenery.
On the way home, Dr. K's office called, but didn't leave a message. So, I called back. The nurse called me back later and we finally figured out that they wanted to tell me the results of the echocardiogram from the other day. I was nervous that there was something wrong and I'd have to go off Herceptin or something.
The news? Everything is within normal limits. My heart is fine - my ejection fraction was within normal limits. The high heart rate and blood pressure is probably more due to the steroids than anything else.
Whew. Thank goodness SOMETHING is normal. Given everything else that's happened, normal is good. It's very very good.
I should have a good night's sleep tonight as all that I worried about last night is okay. Only some diarrhea (which I will get under control), my decision to have surgery was sound, and my heart is fine. And, Eddie and I got to carry on "tradition" with my parents' help.
Thank you, everyone, for continuing to keep me in your thoughts, prayers, etc. I very much appreciate it. I am good.
Wednesday, June 15, 2011
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!
First, I saw the physical therapist. In general, except for the area closest to my armpit, the lymphedema was vastly improved in just one day. One area was 3.5 cm smaller, right above the elbow. The elbow was about 1.5 cm smaller. The area nearer my armpit and under the arm may take more active treatment - it is a bit harder, which indicates that the lymph fluid may have created fibroids which are harder to break down. Gentle massage to break up the fibroids will help.
Then, I saw the neurosurgeon. I asked him what symptoms I should worry about if there were brain tumors growing and his answer "headache and nausea - the symptoms you had before surgery". And, I have neither. As for the increased numbness, he saw that the swelling in my brain will fluctuate over the next weeks and that it often takes people 6 weeks to fully recover. It's only been two. So, I won't worry about the numbness just yet. He also says my jitteriness and high heart rate may be related to withdrawing from steroids. As for the lack of ear wax, when I said that the anti-seizure medication causes dry mouth and also nose irritation and dryness, I said maybe lack of ear wax could be related to that and his answer was "that's true theoretically; but I've never heard of a connection".
So, I guess I won't worry about growing brain tumors. I start Tykerb tomorrow, I think.
I'll see the general surgeon later today, after a couple of visits from friends and colleagues.
Joanna suggested maybe we biopsy the two suspicious areas. I'll mention it to him.
I was also able to get a decent night's sleep. I slept from 10-11, then 11-1am, then took an Ambien and slept until 4am, then 4-5, then 5-6. So, 8 hours.
All in all, a good start to the day. Thank you everyone!
Tuesday, June 14, 2011
Today, I first saw the wound care nurse. The largest open area in my armpit is 4x2.5cm. But a few days ago, near the incision line in back, it started draining again. It had developed a "postule". The wound care nurse feels that this may be a minor staph infection, so she put silver on it and we covered it with the antimicrobial silver gauze.
The two smaller areas that do not have skin near the bottom of the wound have developed red raised areas. It may be infected, too. But it may be cancerous lesions forming. She doesn't know for sure. But in case it was hypergranulation, she put silver nitrate on the two areas (which kills the tissue). I think she also put some silver nitrate on the postule. We will monitor the area and sew what happens over the next few days.
I then saw the physical therapist and I caught her up on all that happened to me in the last couple of months. She put a compression wrap on my left arm, extending from the base of my finger to my shoulder. I need to keep it on for at least 22 hours a day to try to get the swelling down. It was a good 5cm or 2 inches bigger than it was last year. It's just a little bit uncomfortable around my elbow.
The interesting thing the physical therapist told me was that lymphedema is protein-rich fluid, that encourages bacterial infections. So, it's highly likely that the areas that are raised and the postule are little bacterial infections. I will tell the wound care nurse that on Friday. That made me feel a little bit better.
I was a little shaky and jittery all day. It's a side effect of the anti-seizure medication I am on. But I think it was complicated by the two Benadryl I took in the middle of the night last night which can "cause hyperactivity in children". So, I don't think I will take that any more. I will ask my neurosurgeon tomorrow about drug interactions.
My fingers are still numb and now my ring finger and my left thumb are a little numb as well. I will talk to the neurosurgeon about this. I noticed in April that my ears had hardly any ear wax. I had some last week, but not this week. This makes me wonder if there is something new growing in my brain. I also got the call today that my Tykerb will be delivered tomorrow, so Thursday, I will start taking it and hope that it gets to where it needs to go in the brain. Nip whatever it is in the bud. I also wonder if I could decrease the anti-seizure medication dose since I seem to be getting some of the less desirable symptoms, like some lack of coordination. But I will also ask him what symptoms I should be aware of should more tumors develop.
I also see the general surgeon tomorrow afternoon to see about removing the chest tumor. And between the neurosurgeon visit and the general surgeon, I will have two visits - L, a colleague from Fairbanks, and A. who is also bringing a meal.
So, I was a little worried today, but I was also able to do some things with Eddie at school - he had a swimming party this afternoon and I drove him and some of his classmates. Then this evening was his musical. He was the producer. I feel a little less worried because I think my jitteriness (if that's a word) was caused by the Benadryl.
I hope to get a better night's sleep tonight. I got about 5 1/2 hours last night. I will take melatonin first and then Ambien if I wake up in the middle of the night. That's what I did on Sunday night and I had a good day on Monday. I will keep you all posted - and keep putting out good energy that there is no disease progression already.
Monday, June 13, 2011
I took Benadryl last night to sleep, but it was really fitful. I ended up looking at the clock every so often. So, out of frustration because I thought I'd feel as tired today as yesterday, I took an Ambien at 1:50. Then I slept until 5, then dozed off and on until about 6:30pm.
I must've got more sleep than I thought because I've had a great day. I don't really feel that tired or even groggy.
So, now I think the grogginess was due to me having a beer at my friend's graduation party. I think I'll avoid alcohol while I'm on the anti-seizure medication. It doesn't say to avoid it, but now that it's out of my system, I feel okay today. (Yes, dad, I know you'd rather I not drink at all.) So, alcohol only for special occasions this summer.
What did I do today? I stayed home most of the day. I took Ed to school, then went to the co-op to pick up a facial cleanser (something causing my face to break out) and I saw a friend and visited with her and her two kiddos.
I came home, got my checkbook caught up, paid a bill, made some appointments, cleaned my little 1/2 bathroom (I might have a leaky sink - crap), then finally cleaned up myself, then worked for a couple of hours on my blog analysis, picked up Eddie, then got a pedicure.
My tummy felt a little off today here and there, so it's still recovering from the steroids.
After my first surgery on April 1, I ended up losing weight - from about 142 to 134 pounds. When I left the hospital after my third surgery, I was 134. I weighed about 138 on Friday - thanks to the steroids and eating carbs like crazy and probably some water retention. I had wanted to get below 140 for a long time, so I'm going to try to stay right where I'm at. I am attempting to get back to a better diet, but I still want sweet chewy candy. I think about those almond-paste croissants from Le Patisserie, but as sugar feeds cancer, I am trying my best to avoid them. I start adding flaxseed to my cereal again, too. Now, to begin drinking green tea. I really need to readopt an anticancer diet.
I'm good. I don't feel like lying down. I'm watching Ed play his wii. It's a good evening and a good day. I feel like I should be doing something . . . who knows, maybe start gluing the new mosaic design? If truth be told, I want to get back to that blog analysis. : )
Tomorrow will be busy; two appointments in the am (wound care and physical therapy), then hanging out with Eddie during his school's field trip, then I have an echogram afterwards, then Eddie's school play at 6:30. Eddie is the "producer" for American Ideal (a Christian knock-off of American Idol). Let's hope I get even more sleep tonight. I think I will. My heart rate seems to have slowed down more to normal.
Dad made a list of things to do in the yard for Saturday. It's a wish list, so if it all doesn't get done, it's okay as every little bit helps! This list is in no particular order:
1) Weeding weeding weeding - all beds
2) Remove moss from roof
3) Clean gutters
4) Weed step area near the raised garden area and lay tarp
5) Build raised beds (we will already have the wood and the dirt and other supplies) - will include removing debris from existing landscape tarp
6) shovel dirt into raised garden beds
7) trim shrubs on east end of house
And, if there are enough people:
8) re-do front walkway - take up stepping stones and bricks, rack gravel, kill weeds, lay new landscape tarp
9) begin painting primer on house where paint has chipped away
If you have your own extra tools, it would be great if you could bring extra shovels, shrub trimmers, smaller trimmers, weeding tools, saws, wheelbarrows, hammers, etc.
Also, I would appreciate if you could tell me if you are coming or not, so I can get a head count in terms of the amount of food I buy for volunteers. Also, we start at 11am; feel free to come and go as you need to! Thank you again!
Sunday, June 12, 2011
But even so, we got some things done.
This morning, after putting on my mad scientist hat, I mixed a new topical concoction for that chest tumor.
Then mom, dad, and I went shopping at Kohl's. We picked up news shoes for Eddie and t-shirts for me, some clothes for mom and Scott. I also found a nice little mosaic table for the deck outside . . . When the deck gets built.
Had lunch in Albany, then went to a local. Ursery, where we found a Plain Terra cotta plant container and another ceramic one for plants in the backyard. Our plan is to make a curvy pathways, surrounded by beds using retaining wall stones and plant containers. That will be directly behind the deck we plan to build.
By then, I was beat. I think the Ambien made me groggy all day, so I plan to take Benadryl to see if I feel better tomorrow while still sleeping tonight (a couple of doctors suggested this to help with sleep.
I rested through the early afternoon, then right before dinner, I designed a new mosaic. I have bee making them in these 2ft. X 2ft. panels which may end up in a short fence thatnwill divide the side yard in back from the backyard.
After dinner, I rested and watched Chocolat. I love that movie. Still tired. Hope Inget more than 4-5 hours tonight! I feel so lucky my folks are here - I was way too tired to make dinner for me and Eddie. I am glad some ins are getting back to normal, though, like shopping and errands. But the grogginess today has been a bit much.
Saturday, June 11, 2011
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.
Friday, June 10, 2011
When I washed my scalp yesterday afternoon and this morning, my hair started falling out. More is falling out now. it's weird though, it seems to be falling out more in the front, than at my sides and ears.
I wonder how much will be left when I see the neurosurgeon next week. He was going to take clippers and shave the rest off to match what was shaved off for surgery.
I always find it a fascinating experience to just reach up, gently pull on hair and it comes out in my fingers. it's the weirdest thing. It doesn't make me upset or sad. It's actually kinda funny.
I got a bill the other day from Samaritan Health Services for $1217. At the time, I was on a phone with a nurse from my insurance company who was checking in to make sure I was well after surgery. I told her about the bill, so she got someone from one of the departments who helps patients with bills like this. From what he could tell, it seemed that Samaritan hadn't given me the full adjustment amount (as stipulated in the contract between Samaritan and Providence) they were supposed to. So, he said he would call Samaritan's billing department and talk to them. He called me back about 10-15 minutes later and reported that I shouldn't have to pay the bill and to call Samaritan and make sure that I owed a zero balance.
When looking into what my social security benefit might be, I found a statement from two years ago. Then, on my blog, Caroline told me that they stopped sending paper statements and said that I could go to SSA's website to get an estimate of my benefit amount. So, I tried that, but after giving them the identifying information (social security number, name, place of birth, birthdate, mother's maiden name), the site couldn't complete my request. I tried a couple of times and then I called the SSA office's 1-800 number. A few minutes later, a real person called me back, she asked for my identifying information and then informed me that there was a discrepancy between what she had and what I answered. The fix? To go to the local office and bring my birth certificate and ask them to straighten it out.
Well, I had to turn in paperwork there anyway, so I brought my birth certificate. The woman who helped me said that there was no discrepancy - that when she pulled up my SSN, what she had in my computer matched what was on my birth certificate. She had no idea what the discrepancy might be.
This is why you start this process as soon as you can.
One can also make a choice about how to approach situations like this. I could get angry and all stressed. Or, just calmly figure out what hoop to jump through and jump through it. And, then laugh at the absurdity of it all!
I will say that other than this silly discrepany, things have happened fairly promptly with the local SSA office. I applied online on Wednesday, filled out the Medical History form online yesterday, which was the same day I received forms that I needed to fill out, which I brought in this morning. Zip zap. Let's hope the rest of this application process goes as smoothly as it has!
One of the moms in Eddie's class really wanted to do something to help me out - like housework or yard work or something.
I have been thinking for several months of trying to organize a work party. Our yard is out of control mostly because of dad's open heart surgery in February. She couldn't get out in the yard to get to weeding. Even now, dad gets out of breath easily after a few minutes of weeding. And as for me, I haven't done any yard work in like three years.
We finally settled on a date. June 18, a week from tomorrow, maybe beginning at 11am (especially if it is warmer).
Dad is preparing a list of things to do. The shrubs on the side of the house need to be trimmed back; garden beds need to be weeded; a new raised garden bed needs to be built; dirt hauled for that new raised garden bed. I'm not sure what else.
I wanted to invite all my local friends to help out. The more hands, the shorter the work! : )
We will have food and snacks for people. And, drink, too! Thanks in advance everyone!
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.
Thursday, June 9, 2011
I saw the neurosurgeon (which reminds me that I have yet tom post the pic of me with colored bandages) today. I asked how long it would take for the bone to heal back (he cut the bone much like you cut the top of a pumpkin for a Jack-o-lantern) and I don't recall that he gave me an exact date, so I said something about broken arms or legs which take six weeks or whatever to knit back together. He just said, "awhile". He then said that the earliest he would want me to do whole brain radiation was the last week of June or first week of July for that very reason -radiation delays healing.
That is about when I thought I might start. I didn't tell him about the whole Christmas thing, but I did say that everyone says I still have cancer cells running around in my head and he said, "well, that is just an assumption" as if he didn't believe that.
I just realized that one thing I meant to ask him or Dr. K is whether or not the pathology report actually says these tumors are breast cancer . . .
He took the stitches out and then said I could wash my scalp with mild soap. So I did when I came home. I am going to see him again next week and he will finish shaving the rest of my hair off for me, in addition to making sure I am healing as I should be. But shaving may be a moot point - my hair starting falling out again, from the one session of whole brain radiation. As my sister said "Well, that must be a sign that it worked". Yep, Rena, I think you are right!
There seemed to be more necrotic tissue on the chest tumor - at least, it is draining more and then when I changed the dressing, it was bleeding more. That might be a sign that that gets taken off sooner rather than later. I see the wound care nurse tomorrow and see what she says.
Today was a good day, even if I am so so tired (got about three one-hour naps last night, and an hour nap yesterday afternoon. Saw my therapist and talked about the Christmas comment but then talked of future plans. Then my aunt and uncle came down from Portland for a visit. It was fun. Thank you Aunt Nancy and Uncle Alex!
Tomorrow, I see wound care and then get Herceptin and Zometa. Then in the evening is Eddie's school carnival. I will hang out with him for half the time and then his dad will take over as I am not sure of my stamina. It will be a good day!
Wednesday, June 8, 2011
I had a relatively low-key day today. I woke up shaky and with some diarrhea, but within a couple of hours, The shakiness disappeared. I was tired all day, though, as I had only 2-3 hours sleep.
I worked mostly on grouting and placing tiles on my design. I will try to post pics when I can.
Eddie had a tough day at school today. I wonder just how much of his problem is due to what's going on with me. He is why I need to be around for years to come, to help him through days like this as he feels like I am the only one he can talk to about days like today.
Tomorrow, I have therapy - will probably talk about what Dr. K said. Then I get this bandage off my head - yay! My head is really starting to itch! Then Uncle Alex and Aunt Nancy will be done for a visit.
No other real news, other than I get Herceptin and Zometa on Friday.
Tuesday, June 7, 2011
This evening, I could feel my faith reasserting itself, especially after reading my friends' comments on Facebook, an email letter from another friend, and two blog posts by two of my blogging friends (Joanna and Jeanne). Because if all of you have anything at all to do with how long I live, I feel that I will live a very long time because of your support, your prayers, your positive energy, blessings, and strength.
I should say that, for a long time, maybe the last year or so, I have felt that I will eventually achieve stable disease status. I wasn't sure how or when, but I just have this deep sense that I will be okay and that I will be around for a long time. I have faith.
I should say that it isn't a Christian kind of faith for I am not really Christian. I was raised Catholic and I still find comfort in Mass. But over the past couple of years, I have done a lot of reading in other kinds of spirituality and while I can't give you specific quotes from various books, I will say that my thinking about religion and spirituality has evolved and developed over this time. One book that I really liked suggested by my colleague, Nancy, was called "Faith" by Sharon Salzburg. As I said I can't remember specifics but I do remember really liking the book and liking the philosophy or beliefs that she discussed. (She discussed faith from a Buddhist perspective.) It is that kind of faith that she discussed that I feel I have.
I don't believe that there is an omniscient all powerful single entity called "God". I don't want to offend or belittle anyone who believes in such an entity because I also don't think I have all the answers. I mean, who really knows? But I guess I just don't like the idea of a single entity that micromanages all of our lives.
Rather, I think "god" is this universal energy that exists in everything. This energy is within each of us and therefore we are all "god" - we just have to remember that we are. (This idea came from Deepak Chopra's book "Reinventing the Body, Resurrecting the Soul".) And, if we remember that we are "god", we can begin making choices that are for the good of all, including ourselves.
This reminds me of something my friend Phil told me a couple of months ago - I described a situation that he called "academic aggression" and then told me that I needed to learn to navigate such situations with "spirit not ego". And, I realized that much of my own misery or anger or frustration or resentment stemmed from my ego, not my spirit. And, when my ego gets involved, I can hurt those around me. But if I remove my ego from the situation and try to act with my spirit, any kind of obstacle or ill feeling or struggle disappears.
Phil had me read a couple of chapters from a book called "This Thing Called You" by Ernest Holmes last fall. I was angry about a particular situation and after I read that, I realized that I had been reacting as if whatever was happening to another person was happening to me - and I was also bringing in old habits and reactions to the situation. In other words, I reacted with my ego. But when I read those excerpts and then removed my ego from the situation, the stress went away and life was easier for those around me. At the time, I likened myself to a thread in a tapestry. We are all threads in this Tapestry of Life. But when my ego gets involved, I start tugging on my thread and that causes snags and buckles in the tapestry and messes up the overall design. If I react with spirit (i.e., without my ego), then the design is in harmony.
I am running out of steam here. I feel like I need to explain more about this sense of faith, but words aren't coming to me. But I wanted all of you who are worried about me to know that my faith has returned and that that faith - this feeling I have inside of me - tells me that I won't die anytime soon. I expect to have many Christmases. I expect to achieve stable disease status. I need to approach my treatments and my life from this sense of spirit and faith and to remove my ego from the situation. Things are as they should be right now. I will admit that it sucks to have to undergo more treatments sooner rather than later. But it is what I need to do. The decision to begin radiation in a few weeks (rather than later in the summer) feels right.
I think the brain mets and Dr. K's message about Christmas are attempts by this universal energy out there to tell me to get back to learning how to live my life by spirit, not ego. I really want to learn how to meditate and I intend to make qigong part of my daily practice.
It is also telling me that I still need to slow down and rest. So, this morning, when I made the decision to apply for social security disability felt right. It is time for me to live life on my own terms and not feel like I have to live up to someone else's expectations at work. I need more time to devote to other spiritual and artistic practices. And, I need to invest more time in my own healing.
So, I have faith that I will be around for a long time to come - and it is that faith that gives me the sense of calm and acceptance and the joy of life that you all say is amazing. I just need to invest the time in my healing to do so. I need to cultivate that faith more. That will be my task in the coming months.
It occurred to me yesterday to look at my Social Security statement - you know the one they send each year about how much you'd receive when you retire and/or go on disability and how much the survivor benefit might be?
Well, the statement I received in 2009 (couldn't locate last year's or this year's) gave me an amount that would cover my COBRA benefits if I went on disability. Between that and my long-term disability payments, my monthly expenses would be taken care of and I'd have insurance.
Plus, I'd be on Medicare, I presume. So, it would mean getting a supplemental insurance for that.
I just don't know if social security would say I'm sick enough to be disabled. But it is enough to look into. Sorta hate saying I'm disabled because I don't FEEL that sick. But I just might have to make that choice anyway.
Monday, June 6, 2011
I spent some time this evening looking at survival rates for brain mets from metastatic breast cancer.
I read studies with all sorts of numbers and averages and such. But I won't report them here because I don't want to put any kind of timeline on my life. I just need to not think about those numbers.
But it seems that surgery followed by whole brain radiation increases my surival rate. And, I think Tykerb will also help keep it all under control. There are a few chemotherapy drugs that cross the blood brain barrier.
But even more important to my longer term survival is if my "extracranaial disease" is controlled. And, according to the last CT of my body in late March, other than scar tissue and calcium deposits in my bone marrow, my "extracranial disease" is controlled. In these cases, it appears that people survive longer than the one Christmas my doctor talked about.
So, I am comforted by what I read. Because I want to live long enough to see Eddie into adulthood.
I was sad after my last post.
But within about an hour, I became pissed off. I think Dr. K wanted to scare me into more aggressive treatments sooner. Well, it worked.
Now, I feel resolute - like I will have energy for the next phase of treatment.
I already made an appointment with the radiation oncologist for next week. I hope to do the treatments beginning June 26 and ending July 15. That way, I can go to the coast for a week knowing that I've done what I can to kill whatever cancer cells are left in the brain.
I will also start Tykerb sometime soon.
I am, however, reserving judgment on the chemotherapy.
Thank you to everyone who continues to think about me, read my blog, pray for me, etc. It surely helps!
And, now, back to regaining my strength.
Dr. K just called me. He wants me to start whole brain radiation in two weeks. And, then do more aggressive chemotherapies like the Taxotere or Ixempra.
But he also said that with the way my cancer is behaving, this may be my last Christmas.
Not what you want to hear from your doctor.
I refuse to believe that that is the case.
But because he sounded so dire, I might do the whole brain radiation in three weeks - so that I'm finished by the time we go to the Coast in mid-July.
And, maybe I'll consider the stronger chemotherapies later this summer - like in August.
In the meantime, he's going to get me back on Tykerb.
Shit. I really wanted to take it easy from treatments this summer.
But I owe it to my son to do whatever it is I need to do. And, I have two books to write.
I also told him about TDM-1 and how it's put one person I know into stable disease status. And, she gets cyberknife treatments for any new brain mets that show up. She thought she was going to die last year and here she is.
I am not giving up on the idea of stable disease status. I can't.
Sunday, June 5, 2011
I woke up feeling out of sorts this morning. I didn't know what I wanted to do and then it occurred to me that I was tired of being home. I wanted to get out of the house and have a change of scenery.
So, I suggested and we decided to go to Spirit Mountain Casino and do the lunch buffet. Dad took Eddie to the children's arcade and I gambled. I lost $12. Eddie won 2200 tickets and came home with a giant slinky and giant sunglasses, among other things.
All in all, we were gone about 4 hours. It was nice to see the countryside. But I'm tired now. I don't feel much like doing anything so I'm back to watching TV.
One of our grad students stopped by with her partner - they brought us two quiches, a veggie one and a bacon one. We had the veggie one for dinner - it was good! Thanks, Courtney and Dale!
I was invited to go to my teammates' birthday celebration after their softball game today, but I'm too tired.
Yesterday, I was somewhat productive. I found a house at the coast, finally, for a handful of nights in July. I also worked on my mosaic design and rested. I think I got about three hours sleep last night.
Tomorrow? I need to get a digital file from my Humanities office so that I can finish my edits to a chapter I wrote last year. I want to get those edits done tomorrow, so I can get started on my cancer blogger analysis and write-up. I also need to pay a bill. But I might also get some more mosaic supplies and work on the mosaic.
I only have to have three steroid pills today. Tomorrow, I will take two and only one on Tuesday. Can't wait to get off that damn stuff. I really wanted to get a solid few hours sleep.
Thanks for driving today dad. It was really nice to get out of the house!
Friday, June 3, 2011
I spent about an hour this afternoon, laying on a camp cot in the sun in my backyard while Eddie played in the water and in his mud pit. It was the first decent day in a long time - for me anyway.
It was relaxing. I was tired and needed to close my eyes for a bit.
I had a productive morning and afternoon. Since I have to wear this silly white bandage for a week, I decided I wanted to to decorate it somehow. I could wear scarves, I suppose, but it's going to be hot this weekend (in the 80's) and couldn't bear to think how much hotter that might make my head. I finally figured out a way to take this paper tape I had (which I had been using for wounds) and color strips in a colorful pattern. Then, I took strips of the tape and put it over the white bandage I went home with yesterday.
It turned out fairly well, even if I do say so myself. I'll try to post pics tomorrow.
I tried to talk to someone at the disability insurance company but it turns out that my claims person was out today. I did find out, however, that they didn't have the paperwork from my doctor. So, I called his office to FAX the paperwork. I *think* that the records person accidentally sent me the copy meant for insurance since I ended up with two copies, so I brought it back to my doctor and they will FAX it today.
I also had to get some wound care dressings for the weakened.
I paid some bills.
I thought I found a house at the coast to rent in July, but they wanted us to rent it for a week minimum. Can't afford that, so now I need to do some more searching. Maybe tomorrow.
A friend came to visit - she ate dinner with us. Thanks, B!
Four more days of steroids. My mouth and tongue are tender. I can't eat anything spicy. I swish with Nistatin and then swallow to help keep away fungal infections. I also swish with aloe vera juice as that seems to help, too. My tummy sometimes feels gurgly so I eat crackers. My other craving is mini chocolate donuts. I don't like my tummy to get empty as it bothers me more then.
My right two fingers feel numb. Sometimes, there's a bit along the side of my right thumb does too. That should go away over time.
No big plans tomorrow except maybe to get a little wading pool for Eddie and his play in the backyard. Maybe some more summer shirts that I can wear.
Thursday, June 2, 2011
The neurosurgeon let me go home today, for which I am very happy! I am tired, though, and can only hope I sleep. I will gradually wean myself off the steroids. Thank goodness. My stay in the ICU was pleasant.
I only have some numbness in the first two fingers of my right hand. It should go away over the next week or so. Otherwise, I already feel steadier on my feet. I will take it easy the next few days, though.
I also have to wear this turban bandage on my head. I am wearing a handkerchief over it now, as there is a spot over the crown that is not as thick and has some blood. I might put some more gauze over it and tape and then color the outside of the bandage for the heck of it. I mean, if I need to wear it for a week, I might as well, eh?
Eddie was very happy when I rode with dad to pick him up from school. I think he's glad I am home. Now, just to spend the next weeks resting and regaining my strength. The nurse practitioner associated with Dr. K's practice also came to see me. Dr. K knows I had surgery. She asked how quickly I would be released for radiation and I told her that I wanted to wait until until later this summer, that I really wanted to gain my strength back. In the meantime, I wanted to start Tykerb for it's protective effect on my brain. H. said that she would let Dr. K know and he would probably call me this weekend. H. understood my reasons for taking a break of sorts.
Glad to be home!
I had the surgery yesterday and am now recovering nicely in the ICU. The nurses are great and am enjoying visiting with them. Mavis the nurse says that it is nice to have a stable and aware patient to visit with!
I will head to a regular room later today as I don't need the constant monitoring.
My is scalp is tender as then tumor was removed corm near then crown of my head. I am back on steroids, so am back to constantly eating crackers. My tummy just gets bubbly - not nauseous - so the crackers calm it and the soda lets me burp.
The nurse said that Inshould recover more quickly this surgery since I am already farther along than last surgery. I took a walk down the hall.
I forgot to askmthe surgeon if he got it all. I assume so as he said the surgery went well. Also want to ask him how long them swelling typically lasts after surgeries of the brain. Just had a CT scan. Guess I will news of that later.
I guess I get to go home tomorrow. YAY!