Doing fine

Dad wants me to stop saying "okay" so I said fine.

I am worried, but because people are sending me good energy, I think I am okay.

I will find out more on Monday when I see Dr. K.

A Much Needed Break

I saw Dr. K yesterday and after recounting all the side effects I have, he agreed I need a break, at least until after Eddie starts school, so at least a couple of weeks.

We talked about treatment options - chemotherapy - and he also looking I to the TDM-1 trial. He will think about what is next and let me know. What this means is after arm radiation, I will get at least two weeks.

My mood is already better. Tired, but now thinking of other things to do.

He increased the fentanyl patch by 12 mg a dag (now 37 mg) so I don't have to take as much dilaudid, soothe constipation and bloating can start to go away.those sgmptoms are better, but my tummy still cramps.

My CEA was 20, which could indicate both tumor growth as well as tumor death. My interpretation is both. There are spots on my chest growing, but radiation is also killing cancner cells. The CEA has. Een as high as 50. So, it could be worse.

I am relieved I get a bit of a break. I will also get a ct scan to see if Nything else is brewing -will try to schedule for next week when I am stronger.

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!

10 out 15 WBR completed

I have only five more sessions of WBR left and then will take a couple of weeks to wean off the steroids. I am on a low dose of steroids so am eating mostly normally, with a couple of Zofran thrown in each day for nausea.

I didn't sleep as well last night, but toward the end. So still resting a lot during the day. I am glad Ed is with his dad although I miss him very much. He still gets to do fun things that I couldn't do. I take a Valium before bed. But the first couple of the hours in the morning, I do have some pain and stiffness in my shoulders.

I might be more energetic the week after next. We should see some improvement in the tumors in my arm by then, although I am not sure of the swelling.

Since I don't know what the future will bring I. The next couple of weeks, I am not worrying about it.

I have been blessed by the generosity of friends. I received a book by Pema Chadron yesterday called "When Things Fall Apart", from one of my oldest and dearest friends. Thank you, P! Also a colleague has started my Stockton, California trip fund with a $200 gift. Thank you, N! I don't even know if I will get into this trial or not, but every little bit helps.

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.

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.

My Doctor and I Understand Each Other

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!

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.

Today is Starting on a Good Note

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!

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!

Not What You Want to Hear from Your Doctor

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.

Already Home

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!

Visit with Dr. K and Random Thoughts

I had an appointment with Dr. K. He described my situation as "putting out fires". I can expect to be in real active treatment for six months. So, a couple of weeks after radiation, I will probably add a chemo to the mix to try to keep cancer from cropping up back in the brain.

And, while it's a serious thing that I developed brain tumors, I still don't feel too worried. I guess I still think that I will enter into a kind of stasis where there is no cancer progression but I can live a relatively normal life.

There is a chance that the brain tumors will come back. But we won't go there.

Maybe in July I can get this lump removed from my chest.

The weird thing about all of this is that I am more irritated and want something done about these damn wounds, the chest tumor, and the lymphedema. I would feel fairly normal if not for them. I guess that has something to do with how I look - I want to look normal even if everything isn't quite normal. I am more irritated about them than the brain tumors.

I have been watching lots of TV and see all these "normal" people and get a little envious since they aren't having to deal with what I deal with. But when I think about the people I know, I see them all dealing with something, so I've come to believe that "normality" is an illusion - or rather, that "normal" means that everyone has their cross to bear. I just don't happen to see it - we are so good at covering it up. I just can't cover up my "cross". And, that's okay.

I've gained a pound, I think, since Sunday. It's all the carbs I'm craving because of the acid reflux. Mom bought some acid reducer tabs for me today and they are already helping. Taking steroids in oral form can cause stomach ulcers/acid reflux. So, last night, my tummy was gurgly. I ate crackers and had a diet sierra mist through the night. But now it seems to be settling down.

Okay, I'm rambling. I'm gonna sign off because I'm tired. But I'm doing okay. Got some paperwork done today, recycled stuff I didn't need, took a tour in the yard to see the blooming flowers, so I feel like it was a productive day. I'm still shaky and weak but tonight, I feel like that's gonna improve. I am thinking hard about starting a mosaic. It's hard for me to read but I want to do something creative and productive. A mosaic just might be the ticket.

Visits with Doctors

On Monday, I saw the plastic surgeon. I asked her why I still had an open wound and the answer was that the bacterial infection (bacterial colony, really) wiped out a lot of the skin graft.

The latisimus flap (the muscle near your shoulder blade) did fill in the big hole created when they took out the cancerous mass. The skin graft was to cover the whole area, but the infection wiped it out.

Dr. T was pleased with the progress of the wound after the infection. Now the whole area is nice red granulated tissue. That tissue will eventually form skin - maybe in about two weeks - but it's going to stall out because the skin can't grow up the "wall" that formed near the back of the wound. Remember when I said that it looked like a ledge? The healthy flesh coming from my back toward my armpit all of a sudden dropped down a 1/2 inch. Well, in order for skin to grow up to that, we need to create a ramp or a slope going down to the granulated tissue, so she used silver nitrite (which is used to cauterize bleeding wounds) to kill some of the tissue at the edge, so it can create a slope that will allow the granulated tissue to grow skin up to that level. There was also an area in the middle of the wound of "hyper-granulation" that needs to be killed so skin can form there. So, we're still in the process of growing tissue. At least I now have an estimate to when I no longer have an open wound. I can handle a couple of weeks. I had a vague idea that it might be months. I'm relieved about that.

Then, yesterday, I saw Dr. K, my oncologist. The assistant noted that it looked like I lost weight. I think I have since surgery as my clothes are looser. I ended up weighing 135 pounds, about 8 pounds less than I did prior to surgery. That was a surprise because when I was in the hospital, I weighed 142. Anyway, I figure I have lost the implant (good for a pound or two), the big mass under my armpit (good for another pound or two), plus I drained a lot of fluid (the whole armpit had edema prior to surgery). I told the nurse that my appetite has been great so I don't think they are too concerned.

I talked to Dr. K about the tumor near my breastbone - I have watched it grow a little bit in the last few weeks since surgery. It seems to want to grow up and out of my skin and now has a little purplish bruise on the skin above it. Also, about an inch up my arm from the port, it seems that part of the catheter comes up to the skin before going down again. I wondered if the port needed to be taken out. He thought that the catheter was okay and also decided that I should start Herceptin again to try to stem the growth of the breastbone tumor. I haven't had chemo for about 7 weeks, so I guess it's time. Eventually, that tumor may be taken out surgically. But I don't feel like thinking about that any time soon. I wonder if I should stat making a poultice of turmeric and aloe vera gel and putting it on that tumor to see if a topical application would help stem the growth? It certainly wouldn't hurt, I guess.

In the meantime, I made it through class yesterday. I asked the students where things stood with their projects and I helped talk them through their literature review. I was pretty tired afterwards - listening for two hours and trying to concentrate on what they were doing. Then I came home, ate lunch, went to wound care, then picked up Eddie, ran an errand, and then saw Dr. K. Whew. I laid down after dinner and I dozed a couple of times through the evening. I didn't get to sleep until late, though. I ran over to the MU for a snack before class and my legs felt shaky afterwards.

I made it through two busy days and didn't feel too tired. Yay! I do try to take it easy when I can. Today, I only have wound care. I might also run an errand or two. Otherwise, I need to grade papers and do some paperwork. My plan is to take Ed to school, come home and rest until I go to wound care, then go back to my office to take care of papers.

Sunny Days and Energy

On Saturday, it was beautiful here in the Willamette Valley, especially through the early afternoon. It was sunny and nearly 70 degrees out.

I had a sponge bath (no showers yet while the wound in the armpit still heals), then went Easter shopping for Ed and found a couple of button down shirts for me. Then my folks and Eddie and I went to lunch. Then, I took myself to urgent care for a dressing change. I then took Eddie to the park. I rested on the bench while he ran around with a former classmate and a new friend. Then, in the evening, he went to Nerf Gun Night. I dropped him off at 5:30pm and picked him up at 8:30pm.

A busy, almost normal day. I rested between activities.

But yesterday, it was cloudy and rainy. I was lazy. I think the only thing I did was go to urgent care. We watched a couple of movies on Netflix (Salt and one with Julia Stiles called Cry of the Owl which was strange and weird). My brother Kevy came over for dinner with me and my folks. Mom made turkey and other Thanksgiving goodies. It was good! Thanks, mom! (Scotty has been in Albuquerque visiting a friend. Ed went to his dad's.)

The doctor at urgent care, who changed my dressing both days, thought that the wound looked better on Sunday and also thought there may have been less drainage (i.e., less bleeding).

The wound, the last few days, has less serous drainage. Instead, it's bleeding more. I'm not sure if that's a good sign. I'll find out today as I have an appointment with the plastic surgeon. I plan to talk to her about why I wasn't prepared by them for still having an open wound afterwards. I will also tell them how long the wound had the infection - until last Tuesday or 2 1/2 weeks.

I also took the transparent film dressing off the skin graft donor site on my thigh. I was nervous as I thought it would stick, but fortunately, while I had to tug in a couple of places, it didn't stick or hurt. I am able to wear pants with the fabric rubbing on the area without it really bothering me.

So, more progress. I think I will be able to teach tomorrow. Finally!

CT Scan this am

cT scans take a lot out of me. Not sure if it is the iodine contrast, the fact that I don't get breakfast until afterwards, or maybe I just didn't sleep well. I need to take it easy this pm.

Anyway, I will need to see if I can schedule appointments with Dr. K after a CT scan more often. He pulled it up as soon as I told him I had it. The good news ismthat it seems like the blood supply to the latisimus muscle does NOT have cancer involvement, so I will get the easier pedicle flap, which means the blood supply is still attached to the flap with reconstruction. It is a shorter surgery and a faster recovery time!

It was hard, though, to keep my left arm above my head because of the pain. I just tried to deep breath through the pain and when I felt myself stiffening up with the pain, I just tried to relax arm and shoulder muscles.

The other spots of cancer (sclerotic or scarred lesions - where there are calcium layers around clusters of cancer cells - in the bone marrow were stable and the tumor at the sternum) were stable. The lung was okay, we think.

Dr. K did say he isn't a big fan of surgery, but I just kept saying that I wanted this thing off/out of my body. I am so tired of changing wound dressings. I hope he understands that chemo wasn't controlling it.

Anyway, he is okay with the surgery and said he would trust the surgeons when they say that this is the right course of action.

I am so ready!

Countdown: 7.5 days and 15 dressing changes.

Pre-Op Visit

I went to Portland today to see the plastic surgeon and to get some blood drawn.

But I took the long way to Portland - and it was longer than expected. I decided to do a quick visit to Spirit Mountain Casino - and at one point, I was $20 up. I ended up $5 to the positive before leaving to Portland.

Unfortunately, I left a little too late, maybe 15 min. late.

Then, I didn't catch the sign that said that I should go straight to stay on Hwy. 18 so instead I ended up heading south on Hwy 22, so after I discovered that, I tried to get an alternate route and ended up driving Hwy 99W all the way to Tigard - stopping at all the towns along the way!

Then, once I got to I-5, I ran into traffic. A big semi broke down.

I was a full 45 min late. Luckily, her office didn't mind, but it did mean that I waited an additional 90 min to talk to her. My own appointment was about 30-40 min all together.

Then it was time to go to get the labs drawn. I finished my day there around 3:50pm.

So, with the plastic surgeon, I found out some things to expect:

1) Dr. T thinks she can do a pedicule flap (one in which the muscle stays attached to its blood supply) which is a simpler procedure. She wants to use my latissimus muscle, but in case the blood vessel for it has cancer and needs to be severed, she will have to use my pectoral muscle.

2) Patients who do this surgery tend to experience a little more pain than those with a TRAM flap - for that reason, she puts a catheter in which will allow the nurses to administer a novocaine-like anesthetic. This will also allow me to get off pain meds sooner rather than later. I like that idea.

3) I will lose the implant, which I expected.

4) The surgery to remove the diseased tissue will take 2-3 hours; Dr. T says that her part will take 4-6 hours. If there isn't a viable blood supply for the pedicule flap, she will have to do a free flap procedure, which involves micro-surgery to connect the blood vessels. This will take an additional 1-2 hours.

5) Dr. T will need to do a skin graft. She will take it from my upper thigh and I can expect pain - the kind you get from a skinned knee.

6) If I have a pedicule flap, I will probably stay in the hospital three or four nights. If it's a free flap, since there is always danger that the blood supply to the flap will fail, so I will be in the hospital 4-6 days so the nurses can keep an eye on the flap to make sure it's okay.

7) If I have a pedicule flap, then I may be feeling strong enough to go to a conference in Vegas three weeks later. If it's a free flap, the recovery time is longer.

8) Dr. T felt that my "muffin top" may be happening because the growth has outstripped its blood supply so it is starting to atrophy.

At the lab, the only thing that ws interesting was that my heart rate was high (about 92, which is about 20 beats higher than usual). This was after I walked from the Tram about 1.5 blocks to the lab, which had a slight uphill. When I mentioned that I was anemic (9.5 for the hemoglobin), she thought that that was why, because I also had shortness of breath. I may have also been slightly dehydrated, since I hadn't had much water to drink beforehand, waiting in the exam room for the plastic surgeon. This also explains my fatigue. At any rate, I need to try to increase my hemoglobin as much as possible.

I got home about 6pm and with the time change, it was still light out. Yay!

Home from Vegas; Dad is doing better

I got home from Vegas last night - roads were okay since the weather system didn't hit until early morning today. I picked up Eddie - it was great to see him again!

This morning, we woke to a few inches of snow, but I still drove Eddie and me to our appointments. Then a friend of mine, R., kept me company to go to OHSU, just in case the roads were bad. But the roads were fine.

I met with both the surgeon and plastic surgeon - I really like both of them! They are going to try to schedule me for surgery ASAP, which may be the week of March 14. I will keep you posted once it's scheduled. It's going to be a long surgery - maybe 7 or so hours. But they feel they can take care of the area under the armpit and reconstruct the tissue there. They said that I have the distinction of being a "unique" (or "unusual"?) case. Dr. P (the surgeon) kept saying even though one or two options are closed because of prior treatments, there are other options. They will take the latissimus muscle on the left - probably the whole muscle - to reconstruct the armpit. They will take out the implant - so I will be flat for awhile. But a much more positive experience than with Dr. *##!

Dad is doing okay. She got up to walk around twice today. I saw him this morning and was able to tell one of the docs to "stop barking at her" and to "ask gently" to move. The nurse (N.) gave me a thumbs up and said I did the right thing!

I am about to go up and say hi. We had to wait for the nurse shift change to see her. I'll write a P.S. with news . . .  

P.S. Dad was okay. Drifting in and out of sleep. Chatted with the nurse about his recovery. Send healing energy her way somshe can get a good night's rest. Love to you all . . . Thank you for your good energy, thoughts, and prayers so far.

Vegas from Mon to Wed, OHSU on Thurs, Cabin Fri to Sun

A few weeks ago, as I was chatting with my Hawaiian friend and colleague on the phone, I invited myself to visit with her and her family when they are in Vegas this coming week. I leave tomorrow afternoon and come back Wednesday evening. We plan to see Cirque Du Soleil Zumanity and also go to Red Rock Canyon. We need to tie up some loose ends from the Hawaiian workshop, too.

While I was in Portland, I got a call from the doc's office at OHSU - I will see him and the plastic surgeon (a female) on Thursday afternoon. I'm not sure how quickly they can work me in for surgery, but I'll know more next week.

Then on Friday evening, I head to a cabin in the woods with my coauthor - we are writing a paper called Seabirds of King Island. It'll be good to have that time to chat together.

And, I have two applications due March 1st and one on March 7th.

Dad had chest pains the whole time we were in Portland, so she went to the ER last night. They've run all kinds of tests, all came back negative (or normal) until the stress test today, which she couldn't finish. The doctor also listened to various arteries and heard abnormalities, so they suspect it's angina or clogged arteries in her heart. They will do an angiogram tomorrow to be sure and then they will decide to do.

It's gonna be an interesting week . . .