Saw the Doctor Today

I saw the radiation oncologist today. In the end, no infectionnin my bladder and my blood work is fine. No idea on what caused the blood in the urine, but as I said earlier, no ibuprofen and no diet pepsi. A very good friend scolded me for even drinking it - thank you!

The biggest concern my doctor had was pain management so she talked with Dr. K and it was decided that I should wear a fentanyl patch. It is longer lasting and releases medicine over three days. It should help with the arm and shoulder pain. At the moment, it gets better for awhile and then hurts, so this will get me more comfortable over the long term. Maybe in a couple of days, I can get back to more normal activities.

I will keep you posted on the patch. Good night!

No more ibuprofen

The doc at the radiation center took my blood and a urine sample yesterday, but by the time I got there, the bloody urine has gone. We figure it is the Ibuprofen, which I took on Sunday. They alsomsaid I could take a second dilaudid pill so I age been alternating two with one to help with pain.

I cried a lot yesterday, especially at the radiation center. I can't wait for the WBR to be over. Two more sessions. Then I hope the nausea goes away and I just have to deal with the pain from the arm radiation. 15 more sessions of that.

No tears today so far. That's good.

My hair is falling out from the WBR. I expected it. Maybe in a month it will start growing out again.

Still constipated from the dilaudid. I take a stool softener and Chinese herbs for it.

Oh. I found out that I will start having to pay for my health insurance in October - $500 or so a month. And Eddie's social security benefits will also be deducted from my long term disability payments. I need to figure out monthly expenses here soon. We will be okay, but money will be tighter come October. I have extra now, so will save up. Nice to know what the finances will all look like finally so I can talk to Eddie's dad.

A new symptom

After a weekend of rest from radiation, I hardly have any nausea. I do, however, have more pain in my necks and shoulders, mostly left but some right, too. So sometimes I take another dilaudid, which is in acceptable limits. It says to take one pill every 1 to 3 hours for pain. I usually take one every four hours. But last night, aboutn3am, I took dilaudid, the anti nausea med. And Tylenol and ended up with bloody urine since about 4:30am. Thisnhappened twice last week, too, so I stopped taking Ibuprofen (did take a dose yesterday afternoon). I hope it is just a combo of meds on. Nearly empty stomach, ut will talk to the nurse today, especially if the bleeding persists.

Only three more sessions of WBR. And 16 more of the arm. Hope the arm pain starts fading more later in the week. I think if I can get through this week, I should start going up on the energy front. Now, I eat, watch TV, rest, sleep or nap, and rest.

Eddie is home and I am glad for that. He stutters less here than with his dad and seems to enjoy just being his own company. My folks have said that they will try to take him on some outings a couple of times a week while I rest from the treatments.

Doing better so far today

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!

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!

Looks Like Gamma Knife

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.

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.

Visit with the neurosurgeon

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!