I am continuing to take it easy. Dad and Scott continue to work on the deck - it wile really cool when it's done! Mom and dad are out running errands. I am finding it harder to find movies on TV today, but they are there.
I slept okay last night, too, although my TV was on most of the night. Seems like I might wake up every couple of hours, fill my glass with ice, and eat some fruit snacks. Seems like these fruit snacks work really well for me.
I think the Dilaudid is making me constipated, but better that than feeling pain. Will get Chinese herbs to help with that.
My neck and shoulders really hurt when I woke up about 10pm last night, so I lowered my pillow and that helped for today. Still used a lot of heat to loosen up.
I get tired every time I take Dilaudid, but that is better than not sleeping.
I didn't even take a Zofran today. Let's see how ling that'll last.
It is a sunny day, but not as hot as yesterday, thank goodness. Seems to make my lymphedema worse. But resting as my doctors ordered.
Sunday, July 31, 2011
I am continuing to take it easy. Dad and Scott continue to work on the deck - it wile really cool when it's done! Mom and dad are out running errands. I am finding it harder to find movies on TV today, but they are there.
Saturday, July 30, 2011
I got a lot more sleep last night. I started taking Dilaudid every four hours for pain, but it also makes me drowsy, so I sleep more, especially at night.
I do have nausea, so I take Zofran regularly and I eat lots of little meals. I hope that after 8 more sessions of WBR, then I can begin weaning off the steroids - the docs say the swelling goes down after a day- which I am keeping at 6 mg per day if I can, of the Decadron. 6 is better than the 16 I was on. I will deal with a little bit of nausea in exchange for going on more steroids.
I don't know what to expect with the arm, although the doctor said to make sure I take Dilaudid within a an hour of doing radiation. She said itmwill get worse before it gets better.
But at least I feel like I am doing something active for the tumors in my grain and armpit.
I expect that TDM-1 trial in Stockton, if I am eligible for it, won't take place until late September, if at all. Rumor has it, though, that Genentech hopes to have FDA approval for the drug to be give to patients in their home clinics by the end of August.
In the meantime, I am just glad I slept. Even if it makes me tired each day. I just rest and watch a lot of movies on TV.
I do have more numbness in my right arm - the three fingers and now into my right forearm a bit. I try to stretch that arm frequently. I am also back to wearing a compression sleeve on my left arm, although I don't go far up my left ATM, to leave the field clear for radiation. My eyes are also having a tough time seeing thongs up close, so between them and my arms, I don't stay on the computer much. I may have to get bifocal lenses.
Still need to work on financial matters, like insurance for me and Eddie beginning October 1. He is covered also by his dad. I will need to work on that next week.
It is much better to feel positive when I feel better. As my acupuncturist says, I am strong, even when I cry. Just glad Eddie is back East with his dad right now while Iam feeling even more under the weather. I hope I feel stronger next week when he returns home. Best not to look to far into the future right now and take things day by day.
Friday, July 29, 2011
On Monday the 25th, I saw Dr. K, the next day, I saw the nurse, on Wed, I saw the radiation oncologist, and yesterday, I saw the plastic surgeon in Portland. The end result is that there are a couple of smaller tumors growing under my left arm, near the armpit. So we did a planning session today and will start Radiation to both the brain and the arm on Monday. I have 8 more sessions of whole brain radiation and 15 more sessions of the arm. I am about ha
Way done with whole brain radiation.
30 days after radiation, I will have another brain MRI and probably a CT scan and can hopefully get on a clinical trial for the TDM-1 trial. But it is in Stockton, California and I would have to go every three weeks. That is what Dr. K is hoping for. Or I could start another kind of treatment here, like a Taxane. But we will cross that bridge when we come to it.
The tumor in my chest is growing, but as the wound care nurse said, it would probably be huge by now so it is good that I had the bulk of it taken out five weeks ago.
In the meantime, I am taking lots of drugs for side effects. Zofran for nausea (but maybe I can taper that off as the antibiotics gets out of my system), steroids for swelling in the brain which helps with headaches and nausea, dilaudid for pain (due to the growing tumors in my arm and increased swelling), Valium for anxiety and sleep, and Ibuprofen, I. Addition to Chinese herbs and supplements.
I am back to not sleeping, get weepy from the pain (controlled now with the Dilaudid), I am a little nauseous, but eating a lot and often helps with that. My appetite is picking up but it is a lot of little meals and I don't eat much. I am not very good company. I am gonna get through these next few weeks. I think next week will be the worst. Or maybe it was this week as I find the right combo of meds to control the side effects. I do think the steroids keep me from being so weepy and the pain meds help too.
It looks like my summer is shot. At least my dad, brother, and friend are building the deck. So I guess we concentrate on the back yard. I can't sit for long in a restaurant, so I am at home or at my appointments.
I am not posting much on the blog or on Facebook because my arms hurt. Maybe now that I take Dilaudid, I can post more again.
Also say Happy Birthday to my son today .. . He turns 11! Wow!
Sunday, July 24, 2011
I ended up with a lot of nausea on Friday -this was after taking the standard dose of 3 250-mg pills each day and one dose of Flagyl. The nausea lasted into Saturday morning. I took Zofran Friday night and Saturday morning. I am happy to report that since I stopped the antibiotic on Thursday, I finally don't have nausea.
But I do have pain in my shoulders and my right forearm. Dad finally talked me into taking Dilaudid so I took some about 1am and again at 7am. I will take that instead of Tylenol and will alternate that with Ibuprofen. I thnk the pain is less and allowed me to sleep better.
I do think the infection in my left arm (not armpit) is less. For now I will just use the antibiotic/silver powder and silver dressing, while I do WBR.
So my plan is to do the WBR, take the pain meds and the anti-nausea meds and try to keep the infection from getting worse.
Dad and Scott are building the deck in back. My friend will come over and help tomorrow. I think the rest of the summer will be spent trying to rest. And work on the back yard. Maybe later in the summer, I will be able to travel more..
Thank you all form the birthday wishes!
Friday, July 22, 2011
Yesterday was my birthday - I'm now 47 and expect to have many more birthdays!
I am doing okay. I think the time at the coast helped me regain some of my mental and physical strength. I might have slept a lot, but I also took long walks on the beach, too.
I saw the radiation oncologist - the one who does gamma knife in Portland - and he suggested that I do whole brain radiation at this time. It is because of the size (about 3.3 to 3.5 cm by 2.2 cm), the irregular area of it (it is not perfectly round), and because there is a cystic component. The good news is that it is not next to the area that causes nausea or vomiting. He also didn't think I needd to start right away. But I decided to go ahead and start next week.
My digestive system is healing. I don't get the cramps like I used to in my stomach. I still just have diarrhea and the only time I really have any nausea is with Tykerb. So, I am off of Tykerb for a few weeks.
I am only going to do 10 treatments of WBR. I have already had 2. They want to do 13. I'm doing to stop it at 10. I also want to start with a lower dose next week - 200 rads (or whatever the measurement is). The usual at this point is 250. But as I've said before, I think the standard doses are for women (or men) who are bigger than I am. I want to see how well I tolerate the treatment.
In the meantime, through the weekend, I will stay on antibiotics. This is because a new wound opened up under my arm - where an area grew. It also bled a lot when I took the dressing off yesterday. So, I took all three Keflex (only took 1 a day for the last week and a half) yesterday and a Flagyl. I want to try to take all three through this weekend to see if that clears up that infection. I saw the wound care nurse yesterday instead of today. I won't take the antibiotic when I start WBR next week. The area where we're trying to grow skin is 2.5 x 0.5 cm, down from 3.5 x 1.0 cm last week. So, that's healing. The chest wound is also healing.
I guess I'm okay with the decision. It will all (or most of it) will happen while Eddie is bak East with his dad.
All in all I broke even at the casino. Pretty good for several days of playing. My sister, though, won about $300. She stopped when she won. Smart girl.
My parents got me a card and flowers. My son also got me a card and a gift certificate to a local coffee place. We treated ourselves to yummy summer drinks there yesterday, after his appointment. I also got a card from my oldest friend, P., who I need to write an email to. I got a card from my supervisor, too. That was cool. Plus over 100 well wishes from Facebook friends. My cousin and her husband are visiting last night and today. They head on up to our cousin up north later this afternoon.
My biggest problem is that I can't seem to relax my shoulder and arms enough. I'll relax them to go to sleep - and will sleep for a few hours (last night about 5 or so), but then I can't get comfortable again. It seems that laying down is the only way to relax them, so I tend to nap a lot.
I will meet with my grad student later today and see about getting her started on a couple of projects. A friend of mine also moved into my office - it will be interesting to see how she moved things around!
Have a good Friday!
Monday, July 18, 2011
I have been enjoying myself so far in Lincoln City, but I still need to rest a lot. I wasn't nauseous yesterday but was today and that is because I started alternating my meds -yesterday I had the antibiotic and today the Tykerb. Turns out the Tykerb gives me more nausea. I was nauseous on our way to the coast on Saturday, until after lunch, same as today. Because I was nauseous Saturday, I decided to alternate the meds so I could enjoy myself more.
Took two naps Saturday evening, slept okay Sat night. Didn't sleep real well last night. My arm and shoulder get achey and I can't get comfortable. I wake up every 90 to 120 minutes at night.
I am also not wearing the compression sleeve because it seems that my infection in the armpit gets worse when I do. So, I will put up with a fat arm until that wound heals. Maybe I won't get an infection since there won't be open skin.
I don't know if I reported this or not, but the neurosurgeon advised me to do whole brain radiation. I think I will do gamma knife for now and then do WBR radiAtion later this summer. I have been getting a headache behind my right eye on occasion, which makes me think the tuner is there.
So it is a hard thing - take the antibiotic and feel better and heal the wound or take the Tykerb to keep any more brain tumors from growing and feel more nauseous (my digestive system is still healing so I think that is why I feel nauseous with it.) I am erring on feeling good right now since I am at the coast and hope I can get gamma knife for the tumor next week, when Eddie is out of town with his dad.
Have taken several walks on the beach and try to practice my "shee-shee-whoo" breath when I do. Turns out I can walk to Roads End Park, walk to the beach, then walk to the casino,then walk on the beach a short way until I find the path that takes me to them road our house is on. Takes maybe an hour, but usually longer since I spend time in the casino. So far, I think I am $30-40 to the good.
So it is good. The weather hasn't been great so I can't hang out on the deck as much. But good walks on the beach. I do feel more relaxed since I don't have appointments.
We are all fairly lazy. Eddie is having fun with his cousins. So it is good. I just wish to he'll I felt stronger and slept better.
Saturday, July 16, 2011
In a few hours, we head to the coast for a few days, until Wednesday. I sure hope I can rest, relax, and most of all, sleep.
I didn't sleep well last night - maybe 4 or 5 hours. I also slept about an hour after dinner.
The wound in my armpit is slowly healing. It is mow back down to 3.5 cm x 1cm. And the chest wound is healing.
I have been streching the right arm -we think there is nerve tension. But it is bothering me again this morning.
I ran some errands yesterday morning and felt good. But was lazy in the afternoon. I packed in the evening, but was groggy because of the nap.
Let's hope my time at the coast is more relaxing and restful.
Thursday, July 14, 2011
I got the MRI results back the other day - first from the nurse on Tuesday afternoon and then from my doctor yesterday morning. I also requested that the neurosurgeon look at the MRI, but I haven't heard from him yet. I didn't want to post anything until I had some definitive information to share.
The bottom line is that the MRI found normal post-operative changes at the top of the left side of my head. There were also no new lesions in other areas. However, on the right side of my skull, behind my right ear, the radiologist noted an "enchanted nodularity" that may indicate progression of metastatic disease. This was the area the neurosurgeon first operated on on May 20. The suspicious area is 3.5 x 2.2 cm.
My radiologist oncologist wants me to do whole brain radiation (WBR), which would start the week after we return from the coast. But the last couple of nights, I've not slept and my shoulders and my right arm have been very tight. I have been very teary and anxious.
But today, as I waited at Home Depot with a friend, she called again and asked if I'd heard from the neurosurgeon. She also said she showed my case to her colleague, who does Gamma Knife "surgery". He told her that he could definitely do this treatment for me.
Gamma knife involves only one treatment, but I think I'd have to have my head bolted down, and then radiation would be delivered to a very localized area. It doesn't have nearly the toxic effects as WBR. It might take half a day and it would have to happen in Portland.
WBR would be another 10 or 13 daily sessions. It would have more toxic effects, like nausea and swelling. The good thing is that it would or could prevent the growth of more metastases. And, she'd want to do it sooner rather than later.
My problem with that is that I still have two wounds that are healing. The one in my armpit has an infection so I am on low-dose antibiotics. That is partly due to the lymphedema. The other wound is in my chest. The top part of the wound, which had been closed by a suture, broke open, so instead of 85% of the skin graft taking, now there is only 60% of a skin graft that has taken. Fortunately, it is not infected.
My digestive system is still healing from the steroids and the high-dose antibiotics. But that is gradually healing with Chinese herbs. I no longer have the nausea.
Yesterday, my acupuncturist and today, my physical therapist, did what they could to relieve the tension in my shoulders and right arm. My physical therapist said that my right arm and shoulder actually has nerve tension, so she did some gentle stretches on my neck and arm.
But as I told my radiation oncologist, Dr. Mc., while I was at Home Depot, I just feel like I have been through so much that WBR seems very overwhelming. I said that I still have two wounds that are healing (which she seemed surprised to hear about) and that all I want to do is to rest and recuperate for awhile before doing WBR. In the end, after much discussion, (I told her that I was now afraid of WBR), we decided to try gamma knife for now and reserve WBR for later when I feel stronger and the wounds are healed.
If I did WBR and experienced nausea, they would want me to go back on steroids, which means that they'd mess with my immune system, wouldn't heal wounds, and I would probably still have an infection in my armpit.
With gamma knife, I wouldn't have the nausea, wouldn't have to go on steroids, and maybe those wounds could keep healing. I could go up to Portland and back in one day.
Once I had that discussion with her (and after we went to the Social Security office), the decision to do gamma knife FEELS right. I don't have the tension in my shoulders and arm. My heart and head and body feel lighter, like I'm not carrying the weight of the world on my shoulers (as I felt earlier today during my therapy session). It feels doable to me. I can probably schedule it for the time when Eddie is in Virginia with his dad.
It's made me realize that my anxiety and tension was due to me fighting and pushing back at my doctors - who wanted me to WBR - and not feeling like they were really hearing me when I kept saying I need to rest. My radiation oncologist., Dr. McG., heard me today (she'd heard me before but kept urging me to do WBR) and agreed that gamma knife would be okay for now.
So, now I feel like I can keep healing, deal with the infection, stay on antibiotics, do gamma knife (to take care of the immediate area behind my right ear), and I can enjoy my summer. This gives me the needed time I need to heal and recuperate if (and that is an if) I need to do WBR.
And, WBR is still a treatment option should I need it. But it can wait until I am more recovered from surgeries and wounds. In the meantime, I am back on Tykerb, which gives a protective effect on my brain.
I think I will sleep better tonight. I already have less tension in my arms and shoulders. That is a good thing. It amazes me to realize just how much the prospect of doing WBR was weighing on me.
I meet with the doctor about gamma knife next week, after we get back from the coast. I feel like I can finally really enjoy my time at the coast. We leave on Saturday. We might even be able to go to Omak to visit my godparents in August. I feel like I can enjoy my summer. Finally.
In other news, we picked up the wood for the deck today - we will still need to get things like wood for the railing and stairs and a door to replace the picture window in the front room. And, we found out that Eddie will also get some benefits (based on my record) from social security. I'll start drawing those benefits around Christmas. Those are positive things happening in my world.
Here's to decreased tension in my shoulders. Thank god.
Monday, July 11, 2011
I saw my physical therapist who said that now that I have been treated with antibiotics for a few days, it is okay to begin wearing compressions garments again. The Area that was red and inflamed has improved, from her perspective, but it is still red and inflamed. So for now I will stay on the antibiotic.
My son saw the dentist and all is well - no cavities!
Then I had the MRI, both with and without contrast. It wad fine except I couldn't quite get my lymphedema arm comfortable. I will get results late tomorrow or Wed. I really hope there is nothing measurable there so I continue getting stronger and let my digestive system heal. (still have some diarrhea).
Went to some friends' child's fifth birthday at a local park. Eddie played at the park and in the sand. He did the same at my friends' softball game yesterday. It feels good to get out and about.
I am tired at the moment. Got about 7 hours last night. And my right shoulder and forearm seem less tense, as does my left shoulder. I think the Valium is working! Less anxious, muscles are relaxing. Getting more sleep. It is a good thing.
Sunday, July 10, 2011
One of my blogging friends, Laurie, commented on my last blog post that rest is as much doing something as anything else. I feel like I have been doing nothing but rest lately, but it is a good reminder - again in this yang-addicted society and with my yang-addicted personality- that it is okay to do nothing.
I haven't done much today. Just ran an errand with dad. My eyes can't focus on anything close (one reason I am not blogging or on Facebook so much). I napped once. Chatted on the phone with a friend. But that is about it.
Yesterday, I paid bills and grouted my mosaic. Just need to do some finish work on it and put sealant on it and it's done.
Took the antibiotic yesterday and started Tykerb (just one pill so my body can get used to it and my digestive system can heal some more). So far so good. My stomach still cramps when I eat.
Oh, I also took a longer walk today. I try to do the "shee-shee-whoo" breath when I do. It is a qigong technique. My acupuncturist says that her teacher knows a group of cancer patients in China who do this three hours a day andnthey are cancer free. It is all part of my plan to take deeper breaths and work the anxiety out of my system.
I have take Valium the last three nights and that also helps. I am able to go longer stretches without eating (otherwise once an hour), so now I feel more human. There is less tension in my shoulders, which is a good thing.
Saturday, July 9, 2011
I had my regularly scheduled infused yesterday - well, it was a week late - but I was a bit nervous about how it would affect me. So, I opted to also get an anti-nausea (which I don't really need usually). I also had an antibiotic infused.
When I saw the wound care nurse yesterday, she noted that the armpit wound was a bit bigger - up to 3cm x 1.5cm, up from 2.3cm x 1cm a few days ago. We attributed it to an infection, especially since the swelling near the armpit is quite red and inflamed and the scar tissue area looked larger. We were glad that I had an antibiotic given to me. But now I need to take it orally for a few more days.
I also found out that with lymphedema, you don't want to be wearing compression bandages with an active infection, so I took off the sleeve (which I just got on Thursday the 7th) and won't wear the compression wrap until the infection goes away.
Also, there was a light infection on the chest tumor wound, so she covered it quite thick with a silver gel to kill any microbes. The less I open it to air, the better, so I will only change it once every two days. Another good reason to stay on an antibiotic.
But for now, I need to take Keflex, which really gave me nausea last week. My digestive system is still not recovered, but it is better. I am eating more and a greater variety and more at one sitting. A good thing.
My CEA was 10.5, down from 12.5 in late May. Down is good, but I hoped it would be down more after two additional surgeries to remove the second brain tumor and the chest tumor.
I am feeling shaky today - and also for the last week or so, I can't focus on anything close. I am trying not to tense my shoulders, but it's hard. I took Valium last night and slept maybe 6 hours or so. After eating breakfast, I went back to bed and got another 30 min of sleep.
So, that's the news. Another day of taking it easy. I wanted to be stronger. But I guess now is the time to rest. My acupuncturist called me a "yang-addicted personality". I guess she's right. I feel like I've been resting for 3 months. But I really should give myself a break. Three surgeries in five weeks - I guess I should give myself five weeks from the last surgery to really feel human. That's three more weeks. Especially since I'm back on the antibiotic for awhile.
Let's hope the MRI shows nothing cooking because that buys me some time to get stronger.
Thursday, July 7, 2011
The night before last, I think I got maybe 3 hours of sleep. By the time I got up - and talked to my folks - I was weepy. Frustrated. Anxious. Uncertain. Pain in my right arm/shoulder
The anxiety was due to the fact that I was to meet with the radiation oncologist about whole brain radiation. I showed her some info I found. And while she agreed that there are docs who would argue against it until something new crops up, she's in the camp (since it seems my disease is controlled from the neck down), that would want to treat my brain more aggressively so that no more tumors crop up.
I am still on the fence with that decision. But she agreed that a follow-up MRI, to see if anything is there, is warranted. So, I have an MRI scheduled on Monday and then I will feel that I can make a more informed decision.
On the one hand, two of my right fingers and thumb are still numb and tingly. I am a bit wobbly on my feet, but there are explanations for why that is (post-surgery/medications/etc.).It could mean there is still some swelling on my brain, not necessarily tumor growth. An MRI will help us answer that.
As for the anxiety and sleep, the radiation oncologist thought I should have Ativan, but I told her that I still had a bottle of Valium (that I hardly took) from a couple of days prior to finding the brain tumors. She encouraged me to try that last night, so I did. I figured that I got maybe 7 hours of sleep last night and I must say I do feel less anxious - at least, my shoulders aren't lifting as much as they did and my right arm/shoulder are less tense and painful.
I am also taking Tylenol regularly, which also helps.
As for the surgery, about 85% of the skin graft on the chest wound succeeded. It is draining fluids, still. But no sign of infection. There is quite a depression there - about the size of an egg. On the boob side, it's maybe 3/4 of an inch deep and on the breast bone side, maybe 1/2 inch. In other words, a big crater in my chest, but preferable to a draining tumor.
The donor site is nearly healed. The surgeon said that he's never seen anyone heal that quickly. He attributed that to my immune system, but it could also be the antibiotic ointment I used on it daily.
As for the lymphedema on my left arm, the area nearest my armpit has gotten bigger. The physical therapist also noted that it was red and thought there might be an infection brewing. So, I talked the surgeon into prescribing IV antibiotics for when I get my Herceptin treatment tomorrow. IV antibiotics will be easier on my digestive system.
I also saw my acupuncturist, who saw my anxiety and also noted the fact that my digestive system is still not right or healed. So, my treatment was based around that - she said my liver is carrying a lot of heat, which means to me that it's processing a lot of the medications I had in my system. So, to keep things simple, I take the anti-nausea Chinese pills and will take that until I feel my digestive system is more healed.
So, I am better today. (I didn't post yesterday since I felt so yucky.) Still a bit wobbly on my feet, but I am taking daily walks down the hill from my appointments (about a mile). My stomach is still cramping after I eat. But I have the next couple of weeks to heal from all the meds before starting anything more aggressive (if I do).
I have Herceptin tomorrow and Zometa, plus the antibiotic.
Tuesday, July 5, 2011
There's some continued good news on that front. The armpit area, where we are trying to grow skin, went from a trapezoidal area of 3.5 by 1.5cm at one end and 1.0 at the other end to 2.3 by 1.3 at one end and 0.8 cm at the other.
The one open area (that opened up prior to surgery) went from 0.6 x 0.4 cm to 0.5 x 0.3 cm.
The other two wounds (the chest sutures and the skin graft donor site) have no sign of infection.
There is a hard lump that appeared, on the arm side opposite the open area where we're growing skin. The wound care nurse said that it looked like scar tissue. The fact that the lymphedema (on the upper arm, nearest the armpit) seems more swollen made her think that this area of scar tissue arose because of increased swelling.
Increased swelling is due to how I'm wrapping my arm, but also because of the increased heat.
I also feel less nauseous. I walked home from wound care today (maybe under a mile). I'm doing more and feeling better. I feel more like my own self. Thank goodness. I hate nausea.
Monday, July 4, 2011
Yesterday, I was reminded again of the importance of engaging with the outside world. If I stay home, my thoughts become morbid, or I feel more pain in my arm, or whatever.
We (my parents and I) took my son to a local festival. At first, I wasn't sure how long I could stay because of nausea or fatigue or feeling too hot, especially because of this compression sleeve. I found myself thinking several times, "These people do not know how lucky they are - to be able to walk around without a care in the world." I thought other things, too, but won't repeat them here.
I was also reminded how much my mood depends on how I feel, especially with regard to nausea. I really can't handle the nausea. I find it so hard to be positive with I feel like crap. But if I feel halfway human, I feel much more positive.
Anyway, I didn't take the antibiotic yesterday. Right before we went to the festival, I drank some ginger tea. And, I did okay. I ate some yakisoba noodles - as a snack and then decided to have it for dinner. As the afternoon continued, I felt better. In the evening, after dinner, a friend from high school stopped by for a visit. And, again, it was really good for me. It buoyed my spirits.
Today, I feel better yet, that is, if I wasn't so tired. I just laid down in bed for about half an hour, probably napped about 15 min or so, and I feel okay.
My stomach is still cramping. But the only western meds I am taking is the anti-seizure medication and Imodium for diarrhea. I am taking Chinese herbs for nausea, plus ginger tea. Mentos, for some reason, also seem to help (of course, peppermint). I am trying to keep it really simple so that my body can continue to detoxify. I don't know yet when I will begin taking Tykerb again. I think I need to let my digestive tract heal more. I think I end up having a lot of the antibiotic side effects (I am taking Keflex). They include gastritis, diarrhea, nausea, agitation, etc. I certainly had the agitation. My stomach cramps any time I eat.
I see both the radiation oncologist and my surgeon on Wednesday and will report my symptoms. I don't think there's much to do besides heal. I do think that I won't do WBR for awhile. For the next few weeks of summer, I just want to have fun.
So, I feel better. I do better when I do get out and about, but I have to be careful not to overdo it.
Oh, I forgot - I did get short-term disability. I got approved on Thursday and received the check Saturday. It was about $1000 less than I thought I would get but that is because of the one week waiting period. But I am okay financially. We'll get through that, too.
I plan to continue healing until we go to the coast in 12 days. When my stomach and digestive symptoms improve, then I will begin taking Tykerb again. I am supposed to have Herceptin/Zometa this Friday and I plan to do it. Let's hope the digestive symptoms heal more by then.
In the meantime, I appreciate your continued prayers and thoughts and blessings. They do keep me from going completely into a deep, dark place.
Saturday, July 2, 2011
I saw my wound care nurse yesterday. The leg graft is healing. No sign of infection in the chest wound and the drainage is fairly minimal.
The big wound in the armpit went from a trapezoidal size of 4cm long by 2cm to 1cm wide to 3.5cm long to 1.5 to 1cm wide.
The four areas that were open are now healing. Three are almost healed. The fourth was about the same size (0.6 x 0.4cm). The fact that they are healing is probably due to the antibiotic, indicating that there was an infection (rather than cancer in the skin) in there of some sort. Being on steroids affected my immune system and delayed healing.
I am hopeful that within two weeks, I won't have any open wounds. I won't hold my breath, but things are improving, slowly but surely.
Yesterday afternoon, about 5:30pm, I threw up, but I didn't have much in my system so there were some dry heaves, too.
I think, in the end, I tried to take too many herbs/medicines/supplements yesterday. In addition to the anti-seizure medication, I had the antibiotic, a probiotic, Chinese herbs for nausea and some for diarrhea, then because I was doing better in the afternoon, I took Chinese mushrooms and turmeric. I also had ginger tea.
At the time I threw up, about 30 min before, I had ginger tea and the tea pills for nausea. I think I threw it all up.
But an hour later, I was able to eat a turkey sandwich and then I ate applesauce through the evening and night. Kept it all down. My stomach actually felt okay into the evening. I just couldn't sleep because of my right arm/shoulder pain. Couldn't get comfortable. (Remember, I haven't taken Tylenol either in the interest of detoxifying and helping my digestive system to heal.)
I finally took an Ambien about 1:30am, slept a couple of hours, woke up briefly, and then slept almost another two hours. Got up and ate some applesauce, then slept another hour, from 5:30-6:30. Realized I was hungry so I ate yogurt and tried to go back to sleep at 7. No such luck.
My plan today - to keep the herbs/supplements/medicines to a minimum. I plan to only take the Chinese herbs for nausea and the anti-seizure medication and on a fuller belly later this am, the antibiotic. Nothing else, unless I get diarrhea, then I'll take one Imodium.
My biggest ambition today is to declutter Eddie's bedroom some more. He's with his dad today and will come home this evening. We'll see if I make it. Then if I still have energy, I may grout the new mosaic. At least, it's a sunny day!
Friday, July 1, 2011
In preparation for my appointment with the radiation oncologist, I found a couple of studies/ websites about doing WBR after surgery. The conclusion? There really isn't good evidence to suggest that WBR will actually improve my overall survival.
Here is what the Brain Mets Breast Cancer site says:
Notice that one study showed that if there was just one tumor, WBR definitely showed a better survival rate. I, however, had two.
In this article, from researchers out of Europe, researchers found that while WBR helped tumors from growing following surgery, it didn't actually improve survival rates or improved neurological functioning.
So . . . Maybe the fact that I have had two sessions of WBR (granted weeks apart), maybe argues that I should instead wait to do WBR until a recurrence shows up, and in the meantime, do what I can to build up my immune system to keep a recurrence from happening and use Tykerb, too, of course.
As Dad said, it is a quality of life issue. And maybe I should get a second opinion?
My nausea is slowly going away. My acupuncturist gave me some Chinese herbs yesterday that I take right before I eat that really help with any feelings of nauseousness. But it's still there, so in the middle of the night, I took a few of the tiny tea pills (that's the way she dispenses them). I also had soe diarrhea yesterday but took an Imodium and another Chinese herb mix that should help with that.
I am drinking about three cups of ginger tea. It's modified a bit from a recipe found by a friend of mine and from a recipe given to me by my acupuncturist. Here is what I do:
1) Take ginger root and grate about 1 tsp. full.
2) Steep grated ginger root in hot water for about 10 min.
3) Strain the ginger out of the hot steep ginger water.
4) Steep one bag each of decaf green and peppermint tea and steep for another 10 min.
5) Add a couple squirts of lemon juice.
By the time you add the lemon juice, the water is more warm and I drink that.
I drink that before a meal or before I take the antibiotic.
So, the nausea is dissipating, slowly. That could be due to the reduced dose of antibiotic (I know I'm taking a risk, but I also assume the dosage prescribed is for a white male of about 180 pounds, not a half-Eskimo of 135 pounds. Medication also affects me fairly strongly - I'm sensitive to it. So, I assume it's okay. My chest tumor site and sutures and the skin graft site show no sign of infection. And the other areas under my armpit continue to heal.
I am taking my anti-seizure medication religiously (twice a day) and not taking Tykerb.
I also canceled my Herceptin treatment for today.
I know I'm taking a risk by not taking Tykerb or Herceptin right now, but I guess in the name of detoxifying from the surgical drugs, the antibiotic, the targeted therapies Tykerb and Herceptin, and the anti-seizure medication, my liver needs a break. So, I'm giving it as much a chance as possible to detoxify.
I plan to begin Tykerb again next week, after I'm off the antibiotic. I assume by then that most of the surgical drugs (anesthesia, etc.) are out of my system. Tykerb will make me feel like I am getting that protective effect on my brain.
I also did have one session of whole brain radiation (WBR), that should help with any potentially growing brain mets.
I will have Herceptin again next week.
I see my radiation oncologist next Wed and ask her some questions about how much WBR increases my chances of no brain tumor growth. Also, I want to ask her how long after surgery do they schedule such treatments. I wonder about doing WBR now because I think the swelling also contributed to my nausea; if there is swelling, I have to go on steroids again and I think that the steroids really affected my digestive system and it hasn't recovered. (Another drug I am still detoxifying from.) But I figure the more I can detoxify, the more able I can tolerate WBR and potentially steroids. So, at this point, I won't start WBR (if I do it) until after we get back from our little vacation to the Coast in two weeks.
So, I know I'm taking risks, but I figure if I do WBR and Herceptin and Tykerb, the treatments are more effective if I am strong and my immune system is strong. At the moment, neither is strong. On WEdnesday, I teared up at home because I just felt like every time I start feeling a little bit better, I get beat back down from side effects.
My side effects right now are three open wounds, a messed up digestive system, and a tight right shoulder and arm, lymphedema in the left arm, and some lack of sleep. This week, I tend to sleep in one or two hour chunks and wake up frequently. I slept off and on from 10pm-4am, for instance, then 6-7am. If I can resolve half of those (and I'm hopeful those wounds heal in the next couple of weeks), then I will feel better about tackling the next step.
The good news is that while my right fingers (the pointer and middle fingers) of my right hand are still somewhat numb - they are sensitive to heat - and while I have nausea, I have not had the headaches. I think a headache might be one of the main symptoms of a brain tumor.
So, I am okay. Recovering from everything. Taking it easy. But things are looking up. Finally.