Archive | January, 2010

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!


A Dark Day Turned Brighter

30 Jan

DISCLAIMER: This is a rambling, disjointed, all-over-the-place post – but in my defense – it was written with little sleep behind me (for the past several nights, sleep has been very hard to come by) and this post was written between 3:00 and 3:30 am – so, read at your own risk 🙂

Well, today started out pretty miserably. After a night of very little sleep (I kept waking up every 1/2 hour or hour and then trying to get back to sleep and then waking up again) I simply was just exhausted when I got up this am. And, I was in pain. Pain is something that I guess I just don’t deal very well with as it really, really affects my mental attitude. It reminds me of the cancer, it makes me feel unwell and unhealthy and it makes me feel (after 10 months of treatment) that I am just not ever going to be better (which I rationally know is not true, but it is just the way it can make me feel).

If you have read previous posts, you may know that I have opted not to take anti-depressants (although pushed and pushed by several doctors to do so). Maybe it is a stupid decision, but for me, it is just not something I want to do. I have had to clear enough medications through this body and I don’t want to add another one to the mix.

And, besides, some days just stink. That is life, that is what makes the days that don’t stink – the wonderful days – so wonderful – isn’t it? I don’t know, like I said, I could be wrong. But, I just can’t see myself on antidepressants. I do understand the value of these drugs and the real need for people to take them. But, they are not for me, not yet anyway.

I guess it just seems like taking a drug to make me not depressed about something that would naturally cause depression seems stupid. Yes, I feel like my life has been hijacked by this disease, yes I have some days that are really awful and on those days I do not know how to reach out to anyone – which I have learned is about the worst thing you can do.

But, who wouldn’t be depressed by getting a cancer diagnosis, who wouldn’t be depressed some of the time during the treatment and recovery period and who would not sometimes be afraid. Why erase away (if in fact, antidepressants can even do this) or numb away or whatever away, valid feelings, fears and yes, some times the depression I feel?

Would I like to be happy every day? Of course. But, I don’t think that is realistic on drugs or off of drugs – with or without cancer, btw. Overall, I am and always have been a really happy person. And so maybe the dark days that I sometimes now have are more frightening to me, depressing to me because I have been so fortunate to have so few in my life time? I don’t know. But, I do know that I have been ill equipped to deal with the darker days. I tend to retreat and not answer my phone (sorry, I know it’s rude, but I don’t do well answering a call if I know or think I am simply going to cry).

So today was one of those bad days, wide awake at 3:30 am, alone, afraid, crying – yeah, I have those days sometimes (not a ton, but sometimes). And, then the day started – with or without my having any sleep 🙂

My dog needed to be walked, but, just the pull of her leash on a painful day is a bit much. And, I now had to also find a ride to my physical therapy appointment as my planned ride fell through (my planned driver  was sick and I can’t really be around sick people right now, so I needed new transportation). Maybe it was the lack of sleep or just the pain, or both, but, these two simple tasks – walking my dog and trying to find a ride to my afternoon PT appointment seemed overwhelming.

And then I received emails and phone calls from friends and then, for one of the first times, I think, I was pretty honest about how low I was feeling. And, it was met with compassion, empathy, support, love, understanding and encouragement. And, well, it changed my entire day. So thank you to all of you who reached me today in one form or another (John N., Ann N., John S., David O., Mike A., Marv, Patrick, Sue). I don’t usually name people here, but I can’t tell you how much your contact meant to me today. Today had a real rough start to it and over the course of the day, things vastly improved thanks to the support I received.

I tend to be able to talk about the tough days after the fact, but rarely during the tough time. So today was a rare day where someone emailed me and instead of my saying that everything was okay, I let it out. And, it probably did not hurt in the least bit that this person just happens to have a Phd in psychology :). But, he is also my friend and his wife was like a second mom to me growing up. You know who you are and now you know how much you helped me today – both of you.

Also, I had a great evening with my Dad – he came out to take me to my physical therapy appointment (which went really well) and then we had an early dinner, watched a couple of Colbert Report episodes (taped, of course, so without commercials) and discussed music (and the new piano pieces I will start learning – some Bach two part inventions – Dad says they are pretty easy (hmmm, we’ll see) and I am excited about having something “easy” and new to work on. I need it to get my brain back. Seriously, one of the things that is recommended to deal with what they call “chemo brain” (it is kind of a fog that develops and eventually goes away) is to learn new things – the number one thing on the list was to learn to play the piano (or learn new music) or to do math (they are linked, you know) . Well, I’ll take music over math any day, so music it is.

I also ate a huge (huge for me) dinner. I have been really having a hard time with my appetite – as in I do not have one. So tonight I had a whole dinner – fish, vegetables, salad even a piece of corn bread and to top it off a piece of pie. That is more than I have eaten over the course of most days. So, it was a milestone of sorts. I know it sounds silly, but to be able to almost finish off a whole plate of food (okay, so I left a little behind) is huge – and pie?!! Well, that is something I haven’t consumed in nearly a year.

And, there have been so many dear friends on so many other occasions who have done amazing things for me – staying overnight with me during chemo weekends and after my surgery (Tiffany, Amber, Beth, my cousins – Jeff & Jeannine – you’ve all done so much for me), driving me to and from doctor’s appointments, chemo and Herceptin treatments (Tiffany, Carmella, Sandy, Dave, David O, Charles, Marv (who also took my dog for quite some time when I could not physically care for her), Jeff & Jeannine), grocery shopping, financial support too, and the support of my dear friends M & L (who have gone above and beyond, and, to my great fortune – happen to live blocks away from me) who sent their children (also my dear friends) to my home daily all last summer to walk my dog, to do chores, to keep me company and to simply brighten my day (they have raised and are raising wonderful human beings) and friends who have planned outings for me that were within my limits at the time – like the miniature golf afternoon three girlfriends took me on, and to Jennifer, Marissa & Shelby – your thoughtfulness from afar has been such a source of strength and to Dick & Shirley, Lindsay and Lindsay’s Mom, Drew & Hannah, Tony & Andrea (and Andrea’s Mom who crocheted two beautiful hats for me), Stacy and Terri, Gene L.,  Jim N., Michael , Jeannine’s mom Mae, and to people I have never even met, but learned of my cancer from a relative or friend of mine who have sent cards and more and my family – what can I say  – I am so, so incredibly blessed to have my two brothers (Steve and Paul), my sister-in-law Marcella (Paul’s wife) my two wonderful nephews and niece, my cousins (Jeff & Jeannine – you have gone above and beyond), my Aunt Sally (an incredible woman, whom I love and adore), my wonderful Uncle Gene – a true gem and my AMAZING PARENTS, I would be lost without them. And, I can’t forget my band mates in our blues group – “Huge Blues” (I hope I am still in the group, but, I haven’t played with them since the summer – our last gig was at the Orange County Fair -it was a blast and yep, I played bald (why not) – I hope to return to playing soon – the physical therapy is really working and I am excited by that. I have so much to be thankful for.

And I KNOW that I have left out names – some intentionally because I am either not sure you are comfortable being named or because you have specifically asked me not to name you and some simply because it is after 3:30 am and I am onto my second night with little sleep (so please forgive me).

Well, so a very rough night (last night – Thursday night) and a very rough day (Friday) ended pretty well. It is amazing what a difference loved ones and friends can make. And, the physical therapy I am getting is so encouraging – it is painful at times – but it is so obvious that it will work. The down side – it is 30 dollars each visit and I am to go 3 times per week – phew – $90 a week, on top of $60 co-pays for specialists and $30 co-pays for non-specialists – it adds up pretty quick. And all of this when I am not working – but, I have sold a few books and I just received another order today (I just have to get on it and fill the order). So, it will all work out. And, I have had some generous friends, and of course my family, and I will also seek resources that are available for cancer patients.

But, it is amazing how little there is out there in the way of financial support to cancer patients – who truly can not work some times for months or much, much longer. You don’t think about these things until you are sick I guess, but having excellent insurance (which I do have) and having cancer is very expensive.  Something when I am done with this treatment I am going to work to change is the availability of financial resources to cancer patients (among a few other things I have been keeping a running list of – let’s put that law degree to work, right?)

I am deeply committed to that – making very necessary changes. Legislation has to change and resources need to become more readily available to cancer patients. The Susan G. Komen Foundation is amazing – they have raised millions and millions of dollars for cancer research – I am so grateful they exist.  But there is little money available to cancer patients who are unable to work during treatments.

Fortunately, there is a great deal of money for research – especially for breast cancer research (and I am benefitting from this very much). But, the costs financially for the cancer patient are so high and there is so much money raised by Susan G. Komen – for example – but it is virtually all for research – and it is appropriate as they are “racing for a cure”. But, there is very little to help existing cancer patients who can not afford to pay co-pays or simply make their rent or mortgage. So, if money can be raised for a cure, it can certainly be raised for financial assistance to cancer patients during treatment and recovery.

And, God forbid you should not have insurance. I could go on and on here – but won’t this am. But, I do intend to fix some things that need some serious fixing as soon as I am physically able to do so.

Well, I am sure this post is pretty disjointed – I think I will go back up to the top and add a “disjointed post” disclaimer. It is nearly 3:30 am and I have yet to go to sleep. But, I will soon, hopefully. I had to increase a dose of medication tonight (so my Dad is here staying with me just in case) one of the side effects is insomnia (another possibility is drowsiness – well, I definitely did not get drowsy). I feel like I have had way too much caffeine or something. So, that means it will probably make more sense to take the drug in the mornings. We shall see.

Alright, I am calling it a night/morning or whatever.

Thank you, everyone, for your continued prayers, support and positive thoughts you send my way. I greatly appreciate it.


Just a quick recap of the past year – for those of you that are new :)

29 Jan

Hi again,

I thought I would put together a recap of the past year for those of you who are new to my blog. So here it is:

How it all began: I had a mammogram last year in January, it came back with “suspicious” results (indicators of a tumor). Just so all you women out there know I NEVER felt a lump and neither did any doctor ever feel a lump in my breast – so please, please, please get a mammogram, and preferably, get an MRI – even if you have to pay out of pocket for it – it can not only save your life, but can save you an incredible amount of misery by just catching it very early).

After the “suspicious” mammogram, I was sent out for another one, called a “compression” view mammogram to zero in on the suspicious area. This was done a few weeks after the first mammogram. The results of this one came a few weeks later and indicated the need for a biopsy – that’s when I knew in my gut that I had cancer. It just made too much sense – I had not had the same energy level for a while, although otherwise healthy, I just didn’t seem to rebound from a long day or long week of work the way I did in the past. Anyway, had the biopsy and waited several days and then got the news.

The news was simply that I had cancer and that it was an aggressive type. I got the news on a Friday – late in the afternoon. So, it was a long weekend of worrying about how bad it was going to be, could I survive it, etc.

Then lots of tests to determine whether the cancer had spread and determining the specific type of cancer. Fortunately, the cancer did not appear to have spread to any organs. Although it had spread to a lymph node – which meant maybe that is where it was stopped – the lymph nodes having done their job (that is my hope, of course) or – the chance that the cancer left my breast and went elsewhere. There is no evidence that my lymph nodes did not do their job –  all of the tests done indicated that the cancer had not traveled elsewhere. This was great news. There is always the risk that something microscopic made it’s way out – so to this day, I hope and pray that it was caught in time and nothing escaped the lymph node area. So far there is no reason to think that it went anywhere else. (It is also why I chose to go ahead and have radiation treatment, to radiate the lymph nodes that I still have – just in case – anyway – there is more on that aspect under “For Cancer Patients”.

After about a month of learning the results of tests, researching the various treatment options, second opinions, etc., I started chemotherapy on April 2nd, 2009. I finished chemotherapy on July 16 and the had surgery on August 7, 2009. After surgery (which went well) I was to start radiation treatments. However, radiation was delayed for sometime due to post surgery complications and two hospitalizations for infections (since I had chemo prior to surgery, my immune system was pretty taxed and the recovery from surgery was much slower than anticipated).

I started radiation at the end of October and finished on December 22nd. Radiation really zapped me (no pun intended)  but, I had never felt so weak in my life – couldn’t open a bottle of water by myself – still can’t do that actually, but I am a lot stronger than I was back then.

I spent most days in bed the entire day, except to go to doctor appointments – which are and were pretty frequent.

Now I am done with the aggressive parts of my cancer treatment (chemo and radiation) and am on the mend from the cancer. I am still pretty tired and have some limitations. But, I am getting there.

I still have some hurdles in front of me – two more surgeries and the continuation of my Herceptin treatments (which are every 21 days and expected to go through April or May). These treatments are given through an IV infusion and take a few hours or so to get through. I usually have the treatment on a Thursday or a Friday so that I can use the weekend to recover. It is nothing like chemotherapy in terms of the side effects. But, it does put me out for the weekend usually, so I have to pretty much just rest after that treatment. I get a lot of bone aches, fevers, and basically, I just don’t feel well. But, it goes away and I recover from it within a few days.

I am supposed to have all of the same scans that were run last year to determine if the cancer had spread. This makes me nervous, but, it is what it is. I have to know and it is now my lot I guess.  These tests will be run sometime in May 2010 after I complete the Herceptin treatment.

Today is a so-so day. I didn’t get a lot of sleep and haven’t accomplished much – it is just harder on some days. Especially if the day was preceded by a total lack of sleep 🙂

Anyway, this should pretty much put you up to date if you are new to this blog. Also, I added a category called Pictures (it is on the left side of my blog). What I have done is I have tried to put past blog postings that include photos in that category so that you can see pictures – if you are interested). I will also continue to categorize any new posts into the “Pictures” category so people can see new photos.

Well, thank you for reading. Feel free to contact me or to leave a comment here.

Please keep me in your prayers, as they are still very much needed.

Happy New Year (albeit a little late),


Hello Again, I’m Back

28 Jan

Hello Everyone,

Sorry for the absence and change of address.

I finished radiation on December 22nd and have been quite weak since that time. But, I am definitely getting better. I have a lot to fill you in on, since I haven’t written for so long, but, I will not try to do it all in this one post.

I have some great news and that is that I now have a new oncologist. I have been seeing her privately, out of pocket, up at UCLA since the very beginning. She was he person that I sought out a second opinion from prior to deciding upon a course of treatment.

Well, my plan was to switch to her as soon as I could (which would mean switching to UCLA Medical Group and losing my current surgeons here at Hoag and also losing Hoag as my Hospital). But, I felt at some point I would do this – at the point that I was done with my surgeries and the aggressive treatment. Well, I have been granted sort of the best of both worlds. I get to have this doctor as my primary oncologist AND keep everything else local.

It is a dream come true as she is just an incredible doctor and is world renown. I have suffered so much with a terrible oncologist here locallly – which was why I continued to see the doctor privately up at UCLA – I felt my life depended upon it.

Anyway, the short version is that my insurance company finally listened to my story of all of the problems I have had – including one near death experience – at the hands of this physician – and now they are giving me what I want. The whole fear of being sued thing – well, it works. And, I would like to think that my case manager actually does care about the quality of my health care and that this is why he has managed to make this happen for me.

Still, it did not go all so smoothly. I have had to be on the phone constantly to get this to happen. My Mom has done the same – phone calls, helping me get a case manager, etc. She has been and is amazing (Both of my parents are).

As far as how I am feeling, overall, not too bad. Today was my first day of physical therapy and I liked it very much. Yes, there was a little pain involved. But, I am SO glad to be getting help with my arms and my “frozen shoulder”. Finally! It has been very frustrating not to be able to open a screw top from a bottle of juice or just anything that is difficult to open.

I really liked my physical therapist, I started to feel an improvement right away. The exercises are somewhat painful to do, but it is a good kind of pain because I know it will mean that I can resume more normal activities. It has been very hard to be so dependent upon everyone.

The past several weeks have been very tiring, actually ever since the radiation I have had no energy, or very little anyway. I have had an occasional day here or there where I can get out, but for the most part is has been me restlessly resting, ugh.

I am anemic – which was really worrying me as my former oncologist had no explanation for it. But, my new oncologist – who is a breast cancer surgical oncologist (so she knows a lot) explained to me that it was normal to be anemic this far out from chemotherapy because the Hercetin treatments I get every 21 days actually cause the anemia.

So that is why I am so tired. I have also lost quite a bit of weight, but I am still within a normal weight range for my height. I just don’t want to lose any more weight. The radiation treatment really caused me to lose my appetite and I still have quite a bit of trouble with eating enough in one day.

My oncologist (my real oncologist) feels that I am making excellent progress. I still have some hurdles – continued Herceptin treatments (but these are not too bad) and two surgeries coming up. But, so far so good, they believe the cancer is gone, there is no current evidence of my having any cancer and so now I just have to complete the treatment, get through these surgeries and hopefully I will have a clean bill of health from here on out 🙂 Please say some prayers for me on all of that :).

Well, there is a lot more to tell, but right now, I need to get some sleep, something I am pretty short of these days.

Thank you so much for all of your prayers and your help. It is and has been so appreciated (and not just by me, but by my whole family).

God bless,