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UCLA Tomorrow

24 Feb

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

Noodle Clarification and Good News from My Surgeon

17 Feb

Hello All,

Just a bit of clarification – the “noodle” I am trying to find is one of those pool toys, it is a long cylinder shaped floating toy that is made out of some kind of styrofoam or foam – it floats, they come in different colors . . . I think it is called a noodle. Anyway, that is what I am looking for. Unfortunately, these seem to only be for sale before and during the summer. My physical therapist – who is wonderful – wants me to get one to use in my physical therapy. Anyway, if you have a pool, you may have one of these lying around and if so, maybe I could borrow it until I can by my own on the open market? Maybe there is a noodle black market?

I know, I am being very silly. It is the combination of a lack of sleep (for many weeks now, only getting an hour or two per night) and feeling very optimistic about my prognosis and well being (despite the fact that I have two surgeries looming over my head). Still, I feel the cancer has left. I believe it is gone. I’ve been through chemo, surgery (where they took out what cancer they could see that was still remaining after the chemo did its work), radiation and Herceptin treatments for nearly a year now. And, as my surgeon (who I saw yesterday) said, when I was asking her about chances of recurrence etc: “I think you’ve had enough cancer, I think you’re done with that now”.

I will write more about my meeting with my surgeon later. It just takes too much energy to do right now. But, let’s just say it went very well, the news was very good and she was extremely encouraging. Contrast yesterday’s meeting to my first meeting with her about a year ago where she basically told me (because we didn’t know yet how advanced the cancer was – only that it was of a very aggressive type) that the best thing I had in my favor was that I was young and strong and that this was what was going to give me the best chance of survival . . . and that yes, it was possible the cancer could kill me.

It was a horrifying day last year. We didn’t yet know if the cancer had gone elsewhere and as a result I was either in the category of having a disease that could be cured or could be “treated”. The latter would mean treatment for the rest of your life – simply to stay alive.

But, after many tests, it appeared that the cancer had not spread to any other organs and so I was in the first category – having a cancer that could be cured. And then the fight, which continues today, began. And, my life will never be the same – I will always be a cancer soldier, vigilante, dedicated – and not just to my own battle but, to help others do battle. I feel that now this is my lot – to forever be a cancer soldier. But, I am so grateful that it was caught early enough to be curable. I will never know, I suppose. I will always have tests.

But, to see her yesterday and compare yesterday’s meeting with our first meeting nearly one year ago – well, I am blown away. Blown away by how much time has passed, how much work has been done and how far I have come. To go from that incredibly solemn, frightening (horrifying, really) first meeting one year ago to yesterday’s appointment, laughing and joking about my cancer – laughing and joking about anything for that matter, well, it was just surreal, and . . . very uplifting to be on this end of things. I still have a lot to do. But, I know that I can do it.

And, I have (as I have always said) every intention of surviving this disease. I am going to kick cancer’s nasty, little butt!

Please keep up those prayers!

L.

Rainy Weather, Surgery in March

5 Feb

It is really rainy here today. My dog Molly refuses to go out for a walk, well, can you blame her? But, at some point she is going to have to go on that walk. Her mistress insists.

So yesterday went well. I had an appointment with my plastic surgeon and everything looks good – to her, that is :)   My skin has healed very well from the radiation – there is no redness or discoloration at all. Some women end up with permanent tanned or red areas. I am convinced that the cream I was recommended to use has something to do with this healing. It was not suggested by anyone in the radiation department where I was getting my treatment – but, instead, by my then primary care physician. It is a cream called Calendula cream (Calendula is a type of marigold flower). Anyway, it has been used for it’s skin healing properties (for burns, rashes all kinds of stuff) for centuries. So, under the advice of my PCP doctor, I tried it out. It was amazing, it helped so much with the pain and irritation of the radiation treatments. Sadly, this wonderful doctor no longer accepts HMOs, so I lost her. But, she is/was excellent.

Anyway, even though my skin appears healed – I still use it, what the heck. There is probably damage to my skin that I can not see, so I figure keep on using it.

I have a tentative surgery date for March 22nd. That seems so soon and I am still just now doing physical therapy from the last surgery. But, it is my lot and what I must do. The sooner I get it over with the better I guess. Supposedly the healing time from this surgery will be much quicker. I certainly hope so. I have to get my arms &  shoulders in better shape before I have the surgery in March. So I am in physical therapy three days a week now for that.

It is helping a great deal. I also have exercises that I am supposed to do in between treatments (mostly stretches). It is making a difference. It is just frustrating to be so limited. There is quite a difference between my left and right shoulders. The left is coming along really well. But, my right one is really locked up. For example, I can raise my left arm up almost completely over my head (not quite there yet, but pretty far) but, my right arm I can not do that at all.

From a playing the bass standpoint, I am glad it is my right shoulder that is the worse one and not my left – because the left one is the one that has to reach up the full length of my bass and the right arm is the one that plays down low, so I think I can at least still play the bass – even if I can’t yet open a jar of peanut butter or unscrew a water bottle by myself :) Funny – but, I certainly get a lot more joy out of playing the bass than opening up jars, so I guess if that is the way it is for now, then so be it. It will get better and I will work hard to make the physical improvement fast.

I got a call from the Lance Armstrong Foundation yesterday – they have some support services available (hopefully some that are financial in nature) that I inquired about. Unfortunately, when the gentleman called I was on my way out to my doctor’s appointment. But, hopefully we will be able to talk today. I have contacted so many organizations and most don’t call or email you back. Even Susan G. Komen’s foundation – the arm of it that provides financial support to breast cancer patients – I have called their New York office multiple times (which is where you have to call for that arm of their services) and never a call back. Very disappointing.

Oh well, so far I am impressed with Lance Armstrong’s Foundation – at least they call you back. So hopefully they can be of some help.

Well, I am off to my physical therapy appointment!

Thank you for your continued prayers and positive thoughts,

L.

VICTORY!!!

3 Feb

I’m telling you all – this cancer thing is literally a full time job. UGH! I am doing pretty well actually. But, today was just one of those days where I had to spend a bunch of time on the phone, navigating, pleading, arguing etc. with my insurance provider (or, actually the branch of it that I am in – Greater Newport Physican’s Group – GNP) and the medical facility where I receive treatment (and have been receiving treatment since April 2nd, 2009, my first day of chemotherapy).

Anyway, I got a call from GNP this morning telling me that they believed that everything was worked out, (see today’s earlier post: “Now What?”),  but, that I would hear the final word from the treating facility. Anyway, I finally got my answer – that I WOULD be able to continue my needed treatment at their facility at the end of the business day today.

You can be sure there was talk amongst lawyers today on this one. I may sue them, I may not. But, most certainly I have grounds to do so. But, right now my focus is and must be on being cured. So, after hearing the crappy news this am that my former doctor was not going to allow me to continue treatment at their facility, I had to go through a ton of hoops, make a bunch of calls, sit around and wait by the phone (skip my physical therapy treatment as well – because God forbid I should miss their call and then where would I be) and just deal with stupidity all day long.

But, Dr. Hurvitz up at UCLA told me something a long time ago that yet again gave me the courage to go after these people and fight for what I am supposed to have – she said: “Lisa, you are in the driver’s seat with them.” (She told me this after I had told her of what had happened – my near death experience caused by their negligence, the inaccurate information I was given by my doctor, his refusal to even read my file, it is far too much detail for today – and, besides,  it is all covered in this blog – if you care to read all about it, just go back to April and start there) :)

She said that I was in the driver’s seat because what they had done and what they have failed to do for me was “complete malpractice” (the anaphylactic shock that was caused during my second chemo from their prescribing the wrong premedications prior to my treatment, etc.)

So, why would I want to stay there, you might ask? I don’t have to see the doctors there and the doctors do not administer the treatment. The nursing staff does. And, one nurse in particular – Dawn, is the only person who can consistently get in an IV line. She is also, just a saint and absolutely saved my life – truly – she did.

I really would not be here today if it were not for Dawn. There are other excellent nurses there but, Dawn is sort of my angel. I was seconds away from not coming out of anaphylactic shock – I knew I was dying, I couldn’t breathe, and I felt everything in my body just collapsing in on me – by far the scariest day of my life. I could not speak, I could not alert anyone to my situation – it all happened so incredibly fast. But, to my incredible, incredible great fortune, a woman who was there visiting her mom (and happened to be a cancer nurse) walked into the room as I was going through this and immediately grabbed Dawn. Dawn acted so incredibly fast and truly saved my life. So, you might say there is a bond there. The treatment that I receive now is not chemo, but it still requires an IV and it still presents some potential risks (I am just a tough patient – I react to things in ways that many don’t). So, I feel most comfortable having Dawn.

It will probably be a little weird returning there now that everyone knows how I feel about my former doctor – but so what. I felt it last time. And, last time I was there, Dr. Burtzo already knew anyway – it was clear from the fact that every time he had to go to the nurses station – he would walk all the way around to avoid me – kind of amusing actually. He usually comes by the treatment area and says something stupid to us (the patients connected up to IV’s). An example of one of his stupid sayings is “Oh, look at you? You’ve got the best seat in the house!” – referring to anyone who is hooked up, getting hours of chemo in a particular chair that has a view of the outdoors. He says the same thing every time. I wonder if he has ever had an original thought. But, not last time :)   He was quite noticeably over on the other side and walked all the way around to make that happen. Well, I guess he will be getting a little extra exercise on my treatment days. Ha, ha, ha.

Trust me, I didn’t, and won’t, miss him one bit :)

So today was another day hijacked by cancer, but at least I won. I just wish I didn’t have to fight so hard for it. It is tiring and all-consuming. I had other plans for today. But, for now at least, it looks like we are back on track.

So hopefully tomorrow I can get to today’s planned “to do list”.

Much love to all.

L.

Tamoxifen Blues (probably not a great song title) :)

1 Feb

Hello All,

So, one of the things that I haven’t mentioned on here yet is the fact that I am taking a new drug (yippee . . . that is a very facetious yippee, by the way). The new drug is Tamoxifen. It is given to pre-menopausal women who have ER+ cancer (cancer that is estrogen responsive). Tamoxifen does not block the production of estrogen in my body. Instead, how it supposedly works is to block the effects of estrogen in my body. I have a lot more to learn about this drug (how it works, etc.).

I generally do the research long before taking the drug. But, Tamoxifen has been around for 30 years of more and is the standard drug used as a way to help reduce the risk of recurrence – of the cancer coming back. So, I am supposed to be on this drug for 5 years. I have met women who have been on it for 4 or 5 years (some stop taking it earlier than others and some, try it out for a few months and stop and some, just don’t take it at all).

As I want to do everything that I possibly can to reduce the risk of recurrence, I am taking this drug. But, it is definitely something that I have to adjust to. The normal dose is 20 mg per day. I started with that dose, took it as prescribed and within about 2 hours was nearly upside down – the room was spinning, I was very dizzy and had to walk holding on to the walls and furniture just to make my way to the restroom.

So, the next day I got on the internet and read several breast cancer forums where the topic was Tamoxifen. There were many women who said that after trying the drug for a few months – decided not to take it again because the side effects were just too great.

Then I came across a woman who said that she had a lot of problems with the drug initially (when she was on the 20 mg dose), but really wanted (as, of course I do) to stay on it for the benefits it provides in helping to reduce the risk of recurrence. She said that since she has always been sensitive to medications of nearly any kind (me too), that she decided to stop taking the 20 mg dose and instead,”build up” to the 20 mg dose. She did this by taking 5 mg for a week, then 10 for the next week, then 15 the next week and then finally up to 20 mg the following week.

She said that by doing it this way, she did not have the symptoms that she originally had when she just started taking the 2o mg dose (without gradually building up and letting her body adjust to increases in the drug over time).

Well, after taking that one 20 mg dose and having a pretty bad reaction to it, I decided to wait on taking anymore until I could see my oncologist up at UCLA (it was only a few days later anyway, and I just did not want to go trying something out without her input).

Well, I asked her about that and she said that it was fine to start out that way. So, that’s what I am doing. I took the 5mg dose for about 2 1/2 weeks. I had symptoms at first (milder form of what I had experienced with the one 20 mg dose) and then eventually virtually no symptoms as far as I could tell.

Well, I upped the dose this past Friday night to 10 mg. The first dose kept me up all night (it can have the effect of either making you drowsy or causing insomnia). I experienced some dizziness and nausea in the night, but nothing too bad. Then Saturday, again, another 10 mg dose, more symptoms than the night before. Then again last night and wow – more symptoms than the prior to nights. I did not have, however, the insomnia at all, instead I was quite tired and went to sleep pretty easily last night. But, I woke up in the night several times with symptoms.

Still, since I did adjust to the 5 mg dose – over time – I think that I will eventually adjust to the 10 mg dose and then once I do, I will increase it up to 15 and so on. It is clearly pretty strong stuff. I woke up not feeling too well from it today. But, what are you going to do? Or, I guess I should say, what am I going to do – - pretty much everything I just said – gradually increase the drug over time until I adjust to it, which I hope my body will do – it is amazing how just upping it from 5 mg to 10 mg this past weekend has made such a difference in how I feel. Ugh. But, I will get there.

So that is my Tamoxifen story for now. I will conduct my own research on it and see what I can learn about the drug and any way that I can through diet and/or exercise perhaps reduce the side effects and or compensate for anything else the drug might cause.

How’s this for great advice – when I picked up the drug – the pharmacist told me “not to read the list of side effects” . . . nice. :)

So, that is my Tamoxifen story so far . . . we’ll see how it goes the rest of the week.

Second week of radiation starts tomorrow . . .

16 Nov

Hello all,

Well, I feel much better today than I did Friday, that is for certain. I think so much of the anxiety I feel (when I feel it) comes from the unknown. And last week was definitely a week of unchartered waters.

But, on the upside, I have one week behind me and about four and a half more to go. The weekend did have some restorative effect for me and I am hoping each weekend will provide the opportunity to recover from the week. Still, there is unknown. But, Saturday I hit a turning point, I think, with respect to the radiation treatment. I know the drill now. I know it is painful (not during the treatments necessarily, but afterwards). I know that for most women the discomfort and pain increases, over time, due to the cumulative (and intended cumulative) effect of radiation treatment.

But, some women get through the treatments more easily than others. And, attitude DOES make a big difference. So, like I said in my previous posting, I am choosing to get through the radiation treatment feeling as well as I possibly can. I plan on getting through it well.

I am excited about upcoming work (my busy season will begin soon) and I am a little leery about it at the same time. But, this is no different than my feelings about my busy season every year – it is just that this year it had cancer in it. I will simply do what I did when I was going through chemo – take fewer clients and be selective in those clients that I do take.

I really would like to change the name of my blog to cancerfree, instead of cancerfree2b. But, I will just look at it (the blog name) this way now: cancerfree2b – meaning to be, as in forever. I pray for that and know that others are praying for that too. Your prayers are so appreciated.

I did a small amount of work this weekend (very small) and mostly spent my time trying to relax and get the equipment and machines from the radiation treatments out of my head.

And, I blogged a little too (obviously) :)

I also finally had the energy to check my voice mail on my cell phone. I want to thank you for calling me, it means a lot, so much, even though I can’t always call back as quickly as I would like. I apologize to everyone for not calling back this week. But, it was just a really draining time. So please forgive me for not calling, but know that your calls mean a lot to me and do me a great deal of good.

Well, I should be sleeping. So I am off to go do that now. :)

Weekend off . . .

14 Nov

Note to reader: this post was supposed to post Saturday morning and for some reason it did not. Anyway, things have improved since Fri/Sat. But, since I wrote this post and intended to post it, I am doing so, even if it is a few days late). So here you are:

What a difference a day makes . . . I hope :)

Not having to do radiation today or tomorrow is such a relief. I am grateful for these two days of not having to go in for treatment. And, over the weekend of Thanksgiving (which is also my birthday over that weekend) I have the option of having four days off! Hoag’s radiation cancer center will be closed on Thanksgiving day, but will reopen the next day. However, I was told that I had the option of taking that Friday off or going ahead with treatment that day. I think I am going to take the day off – which will mean a four day break from treatment. Since I would be missing a scheduled treatment (they have scheduled 28 treatment days) they would tack on an additional day at the end of my treatment to compensate. Of course, I will see what my radiology oncologist says about it as the date gets closer.But, right now I am leaning towards taking that day off.

All I want now right now is peace and quiet and rest. This driving around (or rather being driven around) from treatment to doctor’s appointments all last week has exhausted me. Yesterday was especially stressful. Some people do not always understand my limitations when I am in pain – and as a result they have the same expectations of me as they might have had a week prior. This radiation is so different, so draining. I don’t know what next week will bring, but I know that I have to take more control over how I spend my time. I have no energy for extensive discourse or disagreements. One argument or heated discussion and I feel as though I am set back days and days. So, I will just not allow any more of that to happen in my life.

I just need to create more space and peace in my life. I need calm, I need to meditate, I need to pray and I need to get my self back. The self that has somehow been stamped out here and there by this ugly disease. I plan on doing whatever I can to make progress on that his weekend and next week.

My busy time of year will begin soon with my work and we shall see how that goes. I haven’t decided how to handle that.I know I am getting better. I know that the radiation will be over with relatively soon . . . I am just about 20% of the way done with my radiation treatment. So that is something I guess. :) And, by the time I would need to perform on any of the contracts that I would enter into in the next 30 days, I will have completed the radiation treatment. The trouble is that I have no idea how I will feel at the end of the radiation treatment. Some women recover pretty quickly – women who are in seemingly worse physical health than I am – women who eat poorly and use cancer as an excuse to have milkshakes everyday and things that they might not ever eat otherwise. And then there are women who take months to recover. I wish I knew which woman I was going to be. Maybe I just need to choose. I mean really, maybe it is that simple – just choosing to not let it take your energy and choosing to recover as soon I am done with it.

Or, maybe I need an occasional milkshake :)

First week of radiation is done!

13 Nov

That’s really all I had to say: first week of radiation is over with . . . yahoo! Now I am going to try to get a few things done and then rest. Sorry that I don’t have anything exciting to say. Although, I am pretty excited to be done with my first week of radiation.

I am getting through this, step by step. Keep those prayers coming my way, I know they are working!

Much love to you all!

4 down 24 to go . . .

12 Nov

I just got back from my fourth radiation treatment and also a doctor’s appointment (which was a follow up for the hospitalization I had in October).

So now I am home and will hopefully have very little more medical to deal with today, that is my hope anyway.

The first three radiation treatments were scheduled in the mornings – until they could get me into the time frame that I preferred. So, today was the first day of getting the new time, which is now 12:15 pm. I am not sure how that will work out. I probably should have asked for a time that was later in the day so that I could accomplish more in the earlier part of the day. But, I think it will work out.

After today’s treatment, they sent me over to see Dr. Cox, my radiation oncologist. He looked me over and said everything looked fine. He also told me that they need to get my skin to a certain amount of redness. It is all kind of strange – they tell you to put aloe on your skin to help take the redness away, but they also want your skin to get red. I don’t really understand it. I feel so much less informed about this stage of things than I did about the chemotherapy and the surgery. But, I am sure it will all work out. I guess I am uncomfortable with the lack of research I have been able to do on the radiation phase of treatment. And, the little research I have done on it pretty much suggests that there is a real divide amongst oncologists as to whether radiation should be given in certain circumstances.

But, I am pretty certain that radiation is warranted in my situation (with the kind of cancer I had and the rates of recurrence that go along with this kind of cancer) it just seems to make sense to do this. I just don’t want to leave any stone left unturned and I don’t want to skip anything that could lessen my chances of having a recurrence. So, that is where I am.

I am frustrated though because I was able to pretty much do most everything that I wanted and needed to do when I was going through chemotherapy (well,  I take that back, I was able to do the work that I needed to do, but not everything else that I wanted to do). My time was pretty much limited to working (which I did full time) and the treatments. But, as of now, I have not been able to do much of anything work wise since the radiation started. And, the time since surgery has also been pretty much just resting and getting out when I can, but never really enough time or ability to focus to accomplish much work.

Still, I am determined to change this. I have to be able to work . . . and not just to pay my bills (which I am pretty much all behind on now – but people  are working with me and I am grateful for that) but I also need to work for my sanity. Spending days in bed because I am too weak to do anything but sleep or lie there, is far too depressing. I am not a good tv watcher, sleeper or lay arounder. I need to feel productive and I really hate that I am so dependent upon everyone else to do even the basics.

I have burdened my friends and family so much. And, it seems endless.I still can not drive a car, so simple errands become complicated. But, I am deciding that the treatments will become easier and less tiresome and cause less fatigue from here on out (regardless of what “they” tell me). I don’t have a choice. And that is that. Just the fact that I can type right now without falling asleep three words in – well, that is a huge improvement over yesterday.

I know I need rest and I know I am supposed to “listen to my body” and sleep when I am tired, etc., etc., etc. But, I need to clean my house, I need to work and I just plain need to feel better. It has been like having my life hijacked. Well, I am done with that. I can no longer exist that way. I have to and I will get to work.

The chemo was supposed to be the hardest part, yet I worked through it. So, I will do the same now. I still feel the need to take a nap and I will . . . just a much shorter one (setting an alarm today).

Tomorrow will be the completion of one week of radiation! And, while I wish I could have completed even an hours worth of work during this week, I guess getting through the first week of treatment is at least some kind of an accomplishment.

Here’s to maybe adding in some work tonight and tomorrow.

Please keep me in your prayers.

Love,

Lisa

Three down, 25 to go . . .

12 Nov

This post was supposed to go up yesterday, but I fell asleep while writing it. So, here it is now.

I had my third radiation treatment today . . . so there are 25 left! Woo-hoo! I am very, very tired. I am hoping it is just my body adjusting to this new treatment. Then maybe next week I will perk up (or perhaps before then, that would  nice).

I don’t know if it is normal or not, but, after my radiation treatments I pretty much go to bed and sleep for several hours, sometimes 5 or 6 hours. But, like I said, hopefully this is just my body adjusting to a new treatment. Maybe once I get used to it, I will not be so tired after.

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