Better today

I had pretty bad day of nausea and constipation/diarrhea yesterday. It was so bad that in the evening, my stomach and lower back were constantly cramping.

Fortunately, my rsdiation oncologist mentioned another drug that could help with nausea and moving things through the digestive tract: raglan. I startedvtaking it last night and a couple of hours later, the cramps in my belly and back stopped. And my bowels moved without hurting my back as before.

Thank goodness. So I feel better today, so I will be able to participate some in my son's birthday party today. And I feel I can eat more. Which will help me gain strength.

I have one more question to write before the party and I guess I should get to it.

Looks Like WBR After All

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!

On the Mend, I think

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.

Too Much Too Soon, I Guess

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!

I'm Okay

Hi everyone,

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.

Hit a Breaking Point - Will Take a Break

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

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

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

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

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

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

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

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

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

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

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

UPDATE: Much better now

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!

Going Out In Public

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.

Anxiety leads to less sleep . . . but the day is ending on a good note

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.