This is the logo on my brother Steve’s knee board. He got this board when he was 14 years old and I think he is still using it. Although, I know he is by far a surfer more than a knee boarder 🙂
I just liked the message. It is a beautiful day here in Orange County and I think it is a good time to go for a walk.
Please keep up the prayers for me and don’t be afraid to say hello on here 🙂
Much love to you all,
L.
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.
Hello All,
Well, my 24 hour pity party is over.
Yesterday’s oncology appointment was a rough one for me (and for my parents, especially my Mom who was in the exam room with me when I saw my oncologist). Like I said, I guess nothing that happened was very surprising. But, it was just a bit sobering to hear it from my doc. Based upon what has been going on, I would have (if I were my doc) ordered a bone scan. And, based upon my intolerance to Tamoxifen, I would have (if I were my doc) suggest/consider some of the other alternatives (none of which I like, but, it is what it is).
But, I’m over it. I have to be over it. So, I am. Simple. I cried last night on the phone with my Mom as I drove home from a gig. It was after midnight and my parents stayed up to get the call that I was safely on my way home. It really hit me then. Having watched all of these young people, healthy, dancing and seemingly with no worries or cares, while I was digesting what transpired in my meeting with my doctor earlier that day, was just all too much.
It was so good to see my band again, to play again and to know that I CAN play (as this was the first time since my surgery that I had even picked up the bass). So “frozen shoulder” and all, it worked out and it was fun.
But, as soon as I got into my car to drive home, called my Mom and heard my Mom’s voice, I fell apart. But, she talked me through my drive home and stayed on the phone with me until 1:00 in the morning. I don’t cry much, haven’t cried in a very, very long time. A year ago, when I was first diagnosed – there was a lot of crying – family, friends. But, that was then and this is now and well, I just haven’t had room for it. I can’t say every day has been easy. But, I can say that overall, I really have felt positive about my ability to survive this disease.
But, yesterday was not one of those days. Anyway, I am done with that now.
I will go and get my bone scan and I will pray the results are fine. And, if the results are not fine, then I will figure that out somehow too. I owe my family and friends way to much to sit around and mope or cry.
It did feel good to get it out though . . . and it is out. Swept out and I am feeling like I am back. Back to whatever it is that I am back to – I don’t know exactly 🙂 – but it is definitely NOT feeling sorry for myself or thinking about what I could have done differently in my life to avoid this disease (as if that were even possible) and it is not about crying (although I don’t doubt I will cry someday again, just hopefully not anytime soon and hopefully it will be tears of joy, I have after all, had many days where I cried because I was so very happy).
And just a final note – I am so very, very glad that I never went the anti-depressant route. If you have read prior posts, you will know that it was suggested many times to me. It is very much standard protocol to be put on anti-depressants pretty much from the moment you are diagnosed with cancer. I was immediately told which types were available and asked which one I would like. I told every medical practitioner that suggested it that I would like not to take any. I got a lot of weird looks and odd responses to my declining these drugs. But, I have no regrets about it. I felt then, as I still do now, that it is normal to have days where you are depressed. It is normal to have those feelings whether you have cancer or not. Sometimes you do just need to cry and isn’t that what makes the good times even sweeter?
So my wonderful parents came out this afternoon and are staying with me tonight. They brought their little rascal of a dog so that he can have a visit with my dog’s groomer here. In fact, I should take a before and after picture of him. Anyway, it is so nice to have their company this evening (even their dog too).
I have so much to be thankful for and grateful for and that is where my focus is now. I am, after all, still here . . . and I plan on keeping it that way for a very long time.
So pity party over, movin’ on! 🙂
Thank you all for your prayers, please, please, please keep those prayers coming! 🙂
Much love,
L.
Well, I woke up this morning in a lot of pain today. I presume it was from just doing too much yesterday. But, my entire body aches and it is hard to get around today. Bummer. I also just feel like I am coming down with something too. But, hopefully I will feel better soon.
I felt pretty sore just from the drive down to San Diego last Sunday – so it doesn’t take much I guess. And yesterday, I had to go to Santa Monica to see my oncologist (see post below for how that went) and as soon as I got home I had to get ready to perform that night. It was the first time I played the bass since last July (before surgery and radiation, but in the middle of chemo). It was nice not to be playing bald this time. But, physically it was pretty hard to do. Still, it was good to know that I can still do it. It was certainly not my best playing, but I got up there and did it and it was great to see my band again. They want to know when I will be back permanently . . . so do I 🙂
With surgery coming up soon (March 22nd) I have time for probably one more gig before surgery. Assuming I recover from last night quickly. Some video was taken from last night. I haven’t seen it yet, but once I do, if it came out alright, then I will post it up here.
I think I am going back to bed.
Please continue your prayers.
Love,
L.
Well, it has been a long day and it is only 3:30 pm. I saw my oncologist today and we discussed the issues that I detailed in my previous post from yesterday (the bone pain I am experiencing, Tamoxifen and possible alternatives to Tamoxifen, since I seem to be quite sensitive to the Tamoxifen).
As I expected, she wants to do a bone scan. Not too thrilled about that. I was hoping she would say with confidence that the pains I am having are simply related to the exercise and physical therapy I am going through or that it is left over, residual pain caused by the chemotherapy that I have had (chemo is pretty rough on your bones, heck it is rough on everything).
So, she is ordering a bone scan – a test I have not had since my cancer diagnosis (although I did have a bone scan many, many years ago after breaking my ankle – in of all places – Fashion Island, running in Susan G. Komen’s “Race for the Cure”. When they did an xray of my ankle, they saw some suspicious dark spots and ordered a bone scan then. That turned out to be a little bit of arthritis – not bone cancer. So, it was a two week scare – waiting for those results. That was in 1996 I think). Anyway, the bone scan takes about 30 minutes, you can’t move during that time. It is not invasive – not that I recall – I don’t recall their using any contrast dye (hate that stuff). So, the test itself should not be a big deal. It is the results that I am fearful of, naturally.
So, lots and lots of prayers please. The read between the lines is – the bone scan is to see if I have cancer in my bones. So, it has been a day and a half I think.
Such a roller coaster.
It was a very long session with both the nurse and then my oncologist. Most of our time was about the Tamoxifen issue (my lack of tolerance to it and alternatives to taking it). The short version is that I have some options, but none of them are appealing. They all involve taking medication (or a combination of medications) for five years. I knew this going in as well. But, it is still somehow much more sobering when you hear it from the doctor.
These options, which I will detail in a later post – not up to it right now – are something I have to choose. It is frustrating. On the one hand, I am in charge. On the other hand, I have to pick my poison 🙂 Sorry don’t mean to be grim. But, I don’t see how I am going to be any less sensitive to the alternative drugs that I can take to replace Tamoxifen.
Then there is the issue of timing. One option can be started prior to my March surgery, the rest can not. And, still another option involves surgery, but, I would still have to take a drug on top of that. So, my instinct is to not go that route (a surgical route, unless I have too).
Still, I have to do genetic counseling to find out if I am braca positive – meaning, whether or not my breast cancer has a genetic connection/cause. If it does, then that means I have a 40 to 50% chance of getting ovarian cancer. So, if that is the case (that I test positive) then I would have the surgery to remove my ovaries.
I learned, for the first time, that because I am young to be diagnosed with this type of breast cancer, there is a higher likelihood that I would be braca positive. But, all of this is unknown (whether I am braca positive or not, and so I am not going there, except I AM going to get tested). I had known before, that it was pretty rare for a woman of my age to get this type of breast cancer. I just had never heard that it meant that it was more likely to have a genetic cause.
Anyway, my head is swimming. My poor Mom’s must be too – she was in the room most of the time. She left a couple of times to make a call or something – but personally, I think she left the room to cry – and to not do it in front of me.
It is so hard to be dragging my parents through this seemingly endless stress and pain.
So that’s all for now. Wish I had more positive news to share. But, hopefully after the bone scan, I will – that is what I am praying for and hope you will all pray for me too.
I have to go now and get ready to play my bass tonight. I haven’t played since last summer, pre-surgery. I played with my blues band at the Orange County Fair. It was fun. We are playing a fairly big venue (big for me that is) and I haven’t played at all since July – should be interesting. The show must go on. 🙂
We are not the headline act. And, the place opens up two hours before the show starts – so plenty of time for people to have had too much to drink to notice that the bass player is off. At least that is what I am banking on 🙂
Please continue to keep me in your prayers, I really, really need it right now.
Love and peace,
L.
Wish me luck everyone! Tomorrow I see my oncologist up at UCLA. We shall see how it goes.
I wasn’t supposed to see her next until the end of April. But, a few things have come up. One is that I don’t seem to tolerate Tamoxifen well and they want to see me over that issue. I guess we are going to discuss some alternatives to Tamoxifen and also discuss the possibility of going back on it. The second reason I am seeing her early is because my surgeon wants me to see her before surgery to make sure my blood counts are good and to see if she (my oncologist) will clear me for my surgery.
It is a mixed bag for me – on the one hand, I want to have the surgery as soon as possible, just to get it over with. But, on the other hand, I want more time before the surgery to get stronger so I can have the quickest recovery time.
The third reason I am seeing her is I have pain and it doesn’t seem to be resolving. I know some of it is from the physical therapy, but some is definitely not. So, who knows. It is a bone pain and that worries me. It has been a year since they have done scans of my body and last year the news was good. But, I am worried as I have new pains that I have not had before. It could simply be that it is residual from the chemotherapy – that wreaks havoc on your bones. And, the Herceptin treatments also affect the bone marrow – so who knows maybe the cause is from either or both. I just don’t know. And so I am seeing her early. I have a feeling that the scans she had planned for May are going to perhaps be done earlier. That’s a little scary to me. Okay, I am lying, it is extremely scary to me. When I saw her last time – not long ago – I asked her where do we go from here – what do I do between now and when I see you next. And her answer was that I should for now, presume I was cured. She said, we’ll never really know. And she also said, “look if you start having some weird pains or something comes up, I will scan you up and down. But, for now, let’s just presume everything is okay because it looks like it is”.
Well, now enter some new pains and I am definitely worried. But, there is nothing I can do about it – so I keep pushing that worry out of my head. I don’t know what she will make of my pain or if she will see it as a cause for running tests early. I am worried about either response – her deciding to wait and do tests in May as planned and I am worried about her having me do the tests earlier.
Anyway, we will discuss these issues tomorrow and hopefully all will go well!
Please keep up the prayers for me, please pray for me to be well, to be cured and to not be so anxious about having surgery.
Love And Peace
So here is what I have been thinking a lot about lately – putting what I have learned this past year to good use. It has been a tough year to say the least. But, something I have never talked about here are the costs of cancer – that is the financial costs. I have certainly covered the emotional ones over the course of this year 🙂 There are many organizations that are racing for a cure. And, I am so grateful to these organizations. Susan G. Komen is certainly one of the most known, but there are many other organizations that are out there raising money for a cure for cancer. However, what I have found is there are few that are out there raising any substantial funds to help present breast cancer patients – or cancer patients in general. There are resources for some aid. But, these are limited financially and in time and scope. For example, most monies for breast cancer patients (in fact, all that I know of) are limited to the time during which the patient is going through chemotherapy, mastectomy and radiation. Once you have completed those treatments you are ineligible for any aid.
From my own personal experience, well, that is really tough. I worked full time during chemotherapy because I felt I needed to to just not be focused on the cancer. And, because I don’t do well just sitting around. Yet, I could have instead, not worked and there were organizations at the ready to provide financial assistance to have made that an option. I knew this. But, what I did not know is that when I was physically unable to work, that these same organizations would not consider me eligible (even though my oncologist said I was too anemic, too weak from radiation etc to work) because I was no longer going through the aggressive part of the cancer treatment.
The unique problem with this for breast cancer patients (the fact that funding is not available to you unless you are currently going through chemo, surgery for a mastectomy, or radiation) is that 1) it can take months to recover from radiation as typically the area radiated is pretty large and 2) if you have a mastectomy then you are likely going to have reconstruction. Reconstruction can in some cases be done in one surgery and in other cases (in particular, those women, like myself, who have undergone radiation) two or more surgeries. These surgeries can take a month to two months each to recover from and you never know if there might be some complication that draws out that recovery time. The point is, that this period of time is not considered “cancer treatment” and therefore is not a period of time (even though you are definitely not able to work) that these organizations consider you eligible for aid.
So, while I still have to fight my own battle, I am definitely planning on doing something to bridge this gap.
First of all, there is just not enough done for women (and men) who are currently going through cancer. I am all for that race for a cure and I am, like I said, grateful for the many non-profits that raise money for cancer research. But, there is really a hole here – there are so few financial resources for cancer patients. And, those that are available are mostly very short term. As a single woman, living alone on one income, it is particularly challenging to bridge that gap. And, add to that my choice to run my own business – well, it doesn’t get run if I am not running. You get my drift.
I am so fortunate to have excellent health insurance and I am even more fortunate to have my parents to assist me. But, the costs are so incredibly high. And, there are so many other things to deal with – navigating your insurance to get the care you need and want and deserve, finding the right information, getting the resources you need while they are available to you etc.
So, while I know I can’t go out and do it today – as I have to be my own cancer soldier right now – I want to form a non-profit that will address these issues.
Don’t get me wrong, I have been given a lot of great information from the American Cancer Society. And there are organizations out there to help. But, there is just this big hole out there where there is nothing available to you after a certain point. And, by that point, most cancer patients have exhausted their resources and simply making co-payments can often be too much, let alone keeping up your insurance premiums. So, I was thinking of something that would bridge the gap between that period of time where there is really good help from some really good organizations and the time that they cut off eligibility (which is long before a cancer patient is back on their feet physically – especially breast cancer patients who face reconstructive surgeries that can keep you out of the work force for months).
So, I hope to be a cancer soldier for others – once I am physically up to it. For now, I am setting aside things, making notes and just creating a file for the things that I would want to be able to provide. I want to also create a portal for all of the organizations that are out there to help. I found out about many of these too late. There just isn’t anyone out there really guiding you and your focus is and has to be on just getting well, getting through the treatment.
Anyway, I just feel that I have learned so much this past year and that I need to put that knowledge to use. Otherwise, it is just another woman who gets diagnosed who is starting over at square one. Does that make sense? I guess what I mean to say is that while I have every intention of surviving and moving past this cancer, it would feel wrong not to impart what I have learned in this past year to newly diagnosed women. I don’t mean to sound all high and mighty, or arrogant. I just feel that I had to learn so much the hard way and that there needs to be so much more out there for cancer patients. Those of us battling the disease today want more than anything for their to be a cure. But, my cure, like anyone’s is dependent upon satisfying the financial realities of cancer treatment. And, these costs are so very high.
Anyway, the point is I want to do something to bridge the gap and I also want to simply connect all of these already in existence non-profits that do help cancer patients so that a newly diagnosed cancer patient can know what his or her options are early on so as not to miss out and to be able to make decisions based upon what is available to them (like I said, create a portal where a newly diagnosed cancer patient could go to find out what resources are available). I found out about most way too late to take advantage of these.
And, I hate to say it, but there is a definite presumption that as a breast cancer patient you are married and have a husband to take care of you. I have never been called Mrs. more times in my life than this past year. It is really odd. And, quite frankly more women than not – who I meet in treatment – do have husbands. But, still, that does not mean that there isn’t a financial crisis brought on by the treatment – both in the costs and the time away from work.
Well, I won’t be filing the paperwork to create a non-profit tomorrow. I still have to do my own battle. But, I am going to do something as soon as I am physically capable of doing it.
Hello All,
As promised, here is the video of my Dad playing one of his original compositions – “Dukie’s Rag”. He wrote it a few years back for my Mom. Just as a bit of background, my Dad was a concert pianist, classically trained. He is, to this day, an amazing pianist and composer. He plays virtually anything – from Rachmaninoff and Chopin to Gershwin and jazz to his own music compositions (which is wide ranging, from the piece I am sharing here to classical pieces and most everything in between). Music and art have played a huge role in my life. I have been so fortunate to have been exposed – on a daily basis – to art and music all during my childhood. My Mom, a painter and my Dad a musician, I really had a wonderfully unique childhood – at least I think so.
Music has saved me a number of times and it is certainly saving me now. It is in me and it is often how I am able to rise above a painful time. It’s hard to explain, but I guess music, for me, has real healing powers – simply in the way it can lift me up. And, there is nothing better than live music. And, of course, my favorite musician of all time is my Dad.
This video was taken just yesterday, at my brother Steve’s down in San Diego where we celebrated his birthday. Sorry for the background noise, it was after all, a party. Also, the poor videotaping was done by me – I had a pretty good sized labrador retriever at my feet constantly trying to get me to throw a ball for him, so that led to some of the choppy or bouncing tape here. But, the music is great!
Enjoy!
I forgot to mention that I made a version of my organic, chopped kale salad this weekend and subjected my family to it (during my brother’s birthday dinner no less). Well, it was a success. I didn’t warn them about the kale being there, and everyone liked it – unless they were just being nice to the cancer patient . . . 🙂
Actually, I am pretty sure they liked it. I liked it, but it is hard for me to tell now what is food I would have liked “pre-cancer-diagnosis” and post. I have changed my diet so much. I can pretty much eat anything, no matter how unpleasant it might taste if I know it is good for me. But, kale, on it’s own, is not the tastiest veggie. However, I think my Kale Chopped Salad sufficiently hides the Kale taste and is actually good.
So I will post some recipes soon.
L.
I am pretty achy today. Probably because I did a lot this weekend. It was a good weekend, but I pushed the limits a bit. Friday I stayed in, but it was a long day of running around (or so I seem to remember it was). Saturday I had brunch with some friends and then Saturday night dinner and dancing (yep, dancing) with a couple of girlfriends of mine. It wasn’t a late night – I was home before 10:00 pm. Still, I would say we danced for an hour straight – it was a good band and it was fun and since they (the band didn’t take a break) we didn’t either. Besides, there was no place to sit down. It was definitely more than I have done in a day, but it felt good to be doing it. And, I tried to incorporate some of my physical therapy exercises into the dancing – so I am sure I made a fool of myself, but I don’t care. (Pictures were taken, so when I get them, I will post them – assuming I don’t look too ridiculous).
Sunday, I drove down (I was a passenger, that is) to San Diego to celebrate my brother Steve’s birthday. Unfortunately, my Mom was not able to join us as she has been a bit under the weather (a cold we think). I am glad to report that she feels much better today.
So Sunday was a long day, the drive, being with a lot of people (not just any people, mind you – my family, which was wonderful). But, still it is exhausting to be “on” for such a prolonged period of time, if that makes any sense. I prefer it – being with family and friends than days alone. But, I do still tire quite easily and well, a lot of the time I am pretty uncomfortable. But, the discomfort will come to an end (I am told) after I get though these surgeries.
I am glad to be able to do more than I could before, that is so encouraging. But, I do have a tendency to over do it a little bit. It is just that on those days or weekends when I feel up to doing things, well then I really, really want to do them. Especially when I know I have another treatment coming up (beginning of March) and that will knock me down for a bit. Then, surgery only about two weeks or less after my next treatment. So, I guess I want to make the most of these days – do things while I can and get as strong as I can before my next surgery.
I don’t even want to think about the surgery right now, kinda scary. But, it is what it is.
Instead, I will think about today and tomorrow and the things I need to get done, things that have piled up as they always do when I am not feeling so hot and just can’t attend to the basic tasks.
So, nothing incredible to report today. I will post some video of my Dad playing the piano from yesterday (at Steve’s house). My Dad played a great rendition of one of his own originals called Dukie’s Rag. He wrote it for my Mom a few years back. It is a great piece of music, fun, upbeat – well, it is after all, about my Mom 🙂
I will post it soon.
I don’t know where my day went, I just know I woke up and was too sore to do much of anything, and now the day is mostly over. Well, that’s the way it goes sometimes. It was a great weekend though and I am sure I will feel better very soon. Of course, tomorrow, I see Dana the torturer, I am a little scared . . . 🙂 But, mostly, I am looking forward to our physical therapy session.
Thank you to those of you who are following my blog. I so appreciate it. To see that people are following my progress, well, it really does my spirit good and, I know that it is part of my making progress – the support I get from you. So please feel free to contact me, send me a note or comment on here if you like. It is all so helpful.
Please keep up the prayers,
Love and Peace,
Lisa
cancerfree2b 