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Scans today

12 Mar

Hi All,

Today was pretty exhausting. It began early in the morning and ended in the late afternoon. A day of tests – ultrasound, bone scan. It doesn’t sound like much, but it took most of the day. The bone scan required an injection three hours in advance (some radioactive isotope that binds to your bones, nice, I must surely be glowing in the dark by now) 🙂

The bone scan was so creepy. I was fine and then all of a sudden, just like the technician said would happen, the machine was about an inch or less above my nose. I just about freaked out. And then I just kept my eyes closed and waited for the machine to make it’s way down my body. I was glad that at least it started with the worst part first – scanning my head – that was just way too close. I have never felt that confined before. Yuck. But, it’s over and here is a picture of me – AFTER – quite happy to be done!

Please say lots of prayers on my results. Hopefully all goes well.

Love and peace,


Glad to be getting out of this room :) The technician was really nice, she even let me take a picture of my bones on the computer screen, she looked around and said, "Go ahead, we're probably breaking the law", she was nice.

Glad to be getting out of this room 🙂 The technician was really nice, she even let me take a picture of my bones on the computer screen, she looked around and said, "Go ahead, we're probably breaking the law", she was nice.

I felt the wind through my hair

12 Mar

Yesterday I was walking my dog Molly and for the very first time since all of this began, I felt the wind blowing through my hair – as in, I have enough hair for the wind to move. It was absolutely wonderful, such a feeling. I can’t explain it – except that it was delicious. I guess, with this cooler weather (cool for here, anyway), I have been wearing hats when I take my puppy out for a walk. But, yesterday I skipped the hat and felt for the first time in a long time – the wind blowing my hair in one direction and then the next. It felt so good.

Here is a picture I took on my way home from a day of medical garbage. I took PCH back home, instead of the freeway, so that I could walk and see birds. I found a beautiful egret.

Egret, Bolsa Chica Reserve

A Night Out

28 Feb

Last night I got to go out with a very dear friend of mine and hear some great music (thank you T.). It was a great evening. We went to hear the Pacific Symphony at the Orange County Performing Arts Center. Their new building (The Segerstrom Concert Hall) is amazing, incredible acoustics. The music and company were wonderful. Here are a couple of pictures.

A day at the beach, one year later . . .

20 Feb

One of the things I did while spending part of the day at the beach

Kale, Beautiful Kale

16 Feb

Above: Foods I have not eaten in over a year, and definitely no fast food, fried food, and I went mostly organic. Confession: went almost a year without any refined sugar, only occasional honey, once in a great while, (not a big deal as I am not into sweets much). Then, in the past couple of weeks I broke that rule and had lemon meringue pie twice in the same week and some chocolate here and there too, bad girl 🙂 In my defense: My oncologist up at UCLA told me to live a little . . . 🙂

One of my new "fast foods" - Chopped Kale Salad - (my own creation) ingredients: organic chopped kale, organic hearts of romaine lettuce (takes some of the bitterness of the Kale out), wild salmon, organic green beans all chopped up & mixed in with balsamic dressing, prep time, about 15 min.

Lunch with friends, A PediCURE and Lemon Pie :)

30 Jan

I met two girlfriends this am for a pedicure and then we went to 2nd Street in Long Beach and had lunch at one of my favorite places. Thank you for meeting up with me Andrea and Sara – and Andrea, thank you for driving.

Here are a couple of pictures from our gathering (you’ll notice I have hair)! Not sure what to do with it, probably should get it styled or something, but I hate to cut any of it off.

Andrea, me and part of Sara's beautiful face, next photo has us all in it.

We had a good time. But, can you tell that I didn’t sleep at all last night? I was up until nearly 5 am, then finally got in a short nap, not good. But, I still found a way to meet up with my friends for a couple of hours, so that was really nice.

Lunch was good and it will be several meals for me – I still can’t seem to gather up much of an appetite (although I did really well last night). And, I did sneek in a small piece of lemon pie just now (after having more of my lunch leftovers, which will surely be lunch again tomorrow. Well, I guess I could be a very cheap date at this point? Feed me three times for the price of one meal. Okay, here’s the picture of ALL three of us – sorry to post the pic with only half of your face Sara, but I wanted to show people that I DO have hair on my head now 🙂 And, as much as I didn’t mind the bald period, it is SO much warmer now to have a head covered with hair!

A fun visit and trip down to Belmont Shores!

Well, given the lack of sleep last night and the preceding nights, I think it is time to take a nap. I am sooooo tired. And, I am sore from yesterday’s physical therapy. But, I can really feel the difference, my physical therapist is really great and she’s also very upbeat and fun to be around. So are the gals pictured at left.

I was pretty darned tired today and hope I didn’t sound like a nincumpoop over lunch – sleep deprivation can really make you sound dumb 🙂 Here’s to a better nights’ sleep tonight.

Please continue to keep me in your prayers. I greatly appreciate it!


My Molly

20 Aug


So here's the plan . . .

3 Aug

L&G Man 8-02-09After spending a day and a half on the phone with my oncologist’s office, UCLA and my insurance provider, I have decided the following: I will skip the Herceptin treatment this week (since my oncologist refuses to allow it, and since I can no longer spend my time and energy – of which I have little – on fighting with him any longer). I will then resume Herceptin next week – after surgery – with or without my oncologist’s permission.

UCLA called my oncologist to try to convince him to allow me to have Herceptin administered this week. As was expected, he did not budge. In fact, he did not take their call and instead his physician’s assistant took the call on his behalf. UCLA called me back and explained that they got no where with my oncologist.They asked his PA to get him on the phone, he was “unavailable”, so they asked her to ask him to consider their explanation of why I should stay on Herceptin . . . but, he said no to approving a Herceptin treatment for this week.

So, UCLA said that while it would not be their course of treatment to have me skip a dose, they said that skipping one week was not going to be harmful and that I could resume the week after surgery. They apparently were able to convince my oncologist to “consider” allowing me to resume Herceptin the week after surgery.

Personally, I believe that is just his getting UCLA, and me, to go away – and then he can tell me after surgery that he doesn’t feel I should resume Herceptin at that time. I know where he is going with this, such arrogance. He is a control freak that is for sure. He doesn’t feel it appropriate to follow what the word’s leading expert on Herceptin treatment advises. Nope, he is apparently smarter than the scientists who developed and have researched and tested this drug since 1991.

Here is what I have since figured out. The whole reason I am even having this fight about getting Herceptin the week before surgery is because at my treatment center they do not distinguish in their appointment records between a Herceptin Treatment and a chemotherapy treatment. Instead, each appointment is just listed as a “treatment” or, TX. On Thursday of last week, my nurse looked at my appointments and said “I don’t think you are supposed to come back in for more treatment”. I told her that it was my understanding that I was to come back. She then asked my oncologist if I should be coming in for another treatment the Thursday before surgery and he said no, that we would not know about continuing with more Chemo until after surgery.

(Although, if you have read my prior posting about additional chemo, UCLA does not administer additional chemo after surgery. Instead, I will continue Herceptin for a one year treatment (this would mean my last would be on April 2nd, 2010). Or, if there is still cancer after the pathology comes in from surgery, then they might decide to keep me on Herceptin longer than a year – but in no case would they have me go through additional chemo).

So, this whole thing is about my oncologist canceling what he thought was a chemotherapy round and not Herceptin. Now, I believe, so that he can not be wrong, he is trying to justify my not having a Herceptin treatment by claiming I have a risk of a heart problem – even though no one else agrees with him.

But, I can not keep focusing on this any longer. So my plan is to skip this week’s Herceptin treatment – since UCLA says it is safe to skip one and since the only way to not skip it would be to spend more than half a day, and thousands of dollars to get it done. Then I will “trust” that my oncologist was being honest when he said he would “consider allowing me to have the Herceptin the week after surgery.”  And, if he denies that, then I WILL go up to UCLA to have a single dose (not the three week dose) of Herceptin and hope that my oncologist will approve the dose for the following week (that would be the second week after surgery).  This is really all so ridiculous. My oncologist has gone from 1) having no problem with my continuing the Herceptin prior to and immediately following surgery to 2) changing his mind and canceling the treatment and then claiming that, no, he knew he was canceling Herceptin and that he did not think it was chemo he was canceling and that he wants me to delay resuming Herceptin until 4 weeks or more after surgery to 3) still no Herceptin the week of surgery, but probably two weeks after surgery if I feel better to 4) he will “consider” allowing me to resume Herceptin the week after surgery.

All of this just further underscores that he does not have a clue. It is all about covering his own butt and has nothing to do with me, the patient or what kind of care I am getting.

So, I will skip one Herceptin treatment and that is it.

And, I will get the heck out of dodge as soon as I am able to do so. But, given my choice of reconstruction surgeon – I don’t know if I can switch anytime soon because I need to work with her for some time. She will start the reconstruction on Friday, but I will need to see her for some time to have it completed. I will write another post on this later. She is really skilled and quite sought after as one of the leading reconstructivThe Boyse surgeons. Obviously, my main focus is on getting rid of my cancer. But, there doesn’t seem to be much doubt about that happening. I am supposed to survive this and be cured. I just want to have the best treatment available on all fronts. I feel that I do have that with the surgeons I have chosen. But, I do not feel that way (obviously) about my oncologist.

I will be filing a grievance with my insurance about my care. But, I will do it after surgery and after I have recovered. Or, maybe I will try to work on it today. I don’t know. I hate to spend more time on the negative, it not good for me.

I am going to go to Hoag today to get a jump start on my pre-op testing which was scheduled for tomorrow morning. But, since my cardiologist has scheduled a treadmill stress test for tomorrow, I am going to try to get some of the pre-op testing that my surgeons requested, out of the way today. Well, enough about this negative garbage . . . here are some pictures from yesterday’s family gathering for my Dad’s 80th birthday.

Please continue your prayers . . . I deeply appreciate it.

Surgery this Friday . . .

2 Aug

Today we are celebrating my Dad’s 80th birthday. We are keeping it a pretty small gathering because I need to limit the number of people I am around this close to surgery (because my immune system is suppressed by the recent chemo). So it is just family who are coming. I will get to see my niece and my two nephews and the rest of my family as well. I will put up some pictures here later. It is wierd not to be able to really do anything for this – I am not shopping for it, cooking for it or doing anything really. That is just strange. But, i don’t have the energy for it at all and I do need to conserve my energy. This just goes so against my grain.

Yesterday I cleaned a little bit and sorted laundry and well, that was all I could do. By 1:00 pm I was done and went to bed for the rest of the day and evening. Thankfully a very good friend came over and did my laundry for me. How about that? Pretty sweet of him I must say. There is no way I could have done it myself. It amazing how exhausted I get from just simply putting things away or loading a dishwasher. It is such an odd experience.

I did walk 1/2 a mile yesterday, so that is something. But, it wasn’t easy to do. And, it is so wierd to tire so easily now. I presume that some exercise is best. But, it is hard to tell at this point. I figure since I can walk 1/2 mile that I should. But, I don’t know at this point what is best. I get so tired now with everything I do.

I am not good at laying around and watching movies, or just laying around in general. Oh well. It is temporary.

I got a call today from one of my band members, letting me know they are thinking of me and praying for me and miss me. I look forward to playing with them again as soon as I have recovered from this surgery.

Hopefully my Dad and I will play some today – I think I should get my bass out one more time before surgery. We’ll see how I feel.

Here is our blues band – (pictured also in an earlier post: “The picture on the left is of all of us bald (thank you Paul for joining me in baldness :)) and the picture on the right is before chemo when I still had hair 🙂

Huge Blues BaldHUGE BLUES

Feeling pretty good

29 Jul

I was able to get some sleep last night. That was a first in a while. And, tonight bodes well too. I feel a lot better.

Molly has her vacation spot all picked out (thank you Marv). So I can relax about that now. She seems to know too . . . I know that sounds silly but . . . my dog has been in a complete funk since my diagnosis. Moping around, won’t go for walks, doesn’t play with her toys, acts uninterested in food she normally goes nuts over etc. What does a dog look like when she mopes? Well, I don’t know, it’s hard to quantify, but she has definitely been moping. Well, like I said, she must know things are improving because today when I came home she acted pleased to see me and ran around the living room with one of her toys (this was her usual greeting when I came home). I completely forgot how she used to do that.

So maybe Molly can tell things are looking up. I do feel pretty good. And, my blood work looks pretty good – especially for one week out of chemo (which is when the blood work was last done). I will have blood work done again this Thursday. Hopefully it will be even better and I will have more red blood cells by then (I am in within the normal range right now, but on the lower end of normal). Still, I hope to get some better numbers this week.

I am a bit less anxious about surgery now. At least right now I am a bit less anxious. I went to a support group today and had an opportunity to speak with several women that have had the same surgery. They all got through it and so will I.

I also saw some friends there that are still going through chemotherapy. They are losing their hair, eyelashes and eyebrows. One of the gals was pretty choked up about it. I felt so bad for her. I still have eyebrows and eyelashes. I really didn’t want to lose either – for some reason the idea of losing my eyebrows and eyelashes bothered me more than losing my hair. I guess just losing the definition in my face. I don’t know. While I did not lose my eyebrows, my eyebrows did get thinner. But, now my eyebrows are growing back in. And my eyelashes, are still hanging in there too. But, I hear that you can lose your eyelashes a month after going through chemotherapy. Not something I am worried about anymore really. I guess I have bigger concerns 🙂 It is funny what doesn’t seem important anymore.

I just looked at the clock and it is after midnight now, so my Dad is 80 years old. It is his birthday today – July 29th. Happy Birthday Dad. I love you.

Well,  I am pretty tired. Hopefully it will be two good nights of sleep in a row.

Here is a picture of my Dad last year on his birthday with my brother Steve. And also a picture of my Mom with my nephew Matthew on the same day.