cancerfree2b

Hello all,

Today is another Herceptin treatment. Today will mark 51 treatments, with one more to go . . . assuming all is well and assuming correct record keeping. Mostly, assuming all is well health wise . . . please say prayers for me on this.

I have been feeling pretty good, especially the past few days. I know this is partly the weather – which has been fabulous – and it is also because I always feel best when I am furthest out from a treatment.

I have a new surgery date – May 11th. This is the reconstructive surgery. If you have read earlier posts, you will know I was previously scheduled to have surgery yesterday. But, I decided to postpone the surgery a little bit to allow time to get physically stronger. I think the date is good – not too far from now, but, not to soon either. I had hoped to have the surgery at the end of April. But, May 11, it is.

Hopefully it will allow me to get back to work in time for my busy season. But, who knows. I can’t rely on that or put pressure on myself to be ready to get back to work in time. The main thing is being well, getting well.

In the meantime, maybe I can finish a book that I am working and get that out there prior to my surgery. That would be really good. We’ll see.

Please keep prayers coming my way. It is greatly appreciated.

Love and peace,

Lisa

Hello All,

Tomorrow I have another Herceptin treatment (and, perhaps, only one more after that).

I started on Herceptin on April 2nd, 2009. Initially the treatment was every week. Then after I completed chemotherapy last summer, the treatments were switched to a three week dose, every 21 days. So, the treatment runs longer, but, I only go in every three weeks. The weekly doses were definitely easier to tolerate than the three week dose. But, now I am nearly done.

At UCLA Herceptin is given every 21 days, the three week dose. They start patients on it this way. The clinical trials were all done in weekly doses. No clinical trials were ever done with the every three week dose. But, UCLA did develop this drug, so I trust their recommendations. Still, I do sometimes wonder about that. Anyway, I was on the weekly treatment through July of 09 and then switched over to the “every three week” dose after surgery. My former oncologist (the idiot) took me off of Herceptin prior to and after surgery – against UCLA’s advice. I fought that battle and ultimately was not able to convince the idiot to keep me on the treatment during that time. UCLA tried to convince him too, but, he was too arrogant to listen.

So, I fired him – not an easy thing to do when your treatment is dependent upon having a facility willing to treat you and not having many options of places to go within your health plan. But, with a lot of work, it all got worked out. I am so glad that nonsense is over.

Tomorrow, my nurse Dawn, will present me with a chart of all of the treatments – there is an issue of how many I have had. I am told I have one more after tomorrow’s treatment. But, I do not trust the facility. I am not keen on being given a chart – created from my medical records. I instead want my actual medical records so that I can review these. But, there is a definite reluctance on the part of the facility to release these to me. I have asked for it, told them that my oncologist at UCLA wants these records. However, the response is to instead provide me with a newly created document that tallies up the treatments (how many one week doses and how many three week doses). This is not acceptable to me.

I am going to show up tomorrow and demand that I get copies of my medical records – I am not leaving without it. I get a bit woozy/out of it during the treatment, so I am going to have to demand it before I start the treatment and insist that I get it before the treatment. I know they are afraid of being sued over the mistakes that were made. It is so ridiculous. All I want is to make certain that I get the exact number of treatments that I am supposed to have – it is simple. And, besides, my oncologist at UCLA needs to have these records.

I can’t believe this stupidity.

Otherwise, things are good.

Wish me luck getting the records tomorrow.

Love and peace,

Lisa

Yesterday I went down to Main Street in Seal Beach, was looking for a place where I could get a shot of wheat grass (supposed to be good for me). It was a pretty day, but, I didn’t notice it too much. I parked at the beach, breeze blowing strong, fresh ocean air. I walked down Main Street and found a juice bar fully stocked with wheat grass. The guy behind the counter, Gary, asked me what I wanted. I thought, hmm, to be cancer free . . . oh, right, you want me to order a drink . . . got it.

I have been in my own surreal fog lately. Overwhelmed, overcome . . . over having cancer.

Anyway, I asked him for the largest size wheat grass he had. “Four ounces”, he told me. I told him I would take it. He asked me if I wanted a lid so I could take it home, and with a funny look he asked me if I was “going to drink it all now?”

I guess four ounces is a lot of wheat grass . . .

I told him yes, all now. And, to explain, I told him that last year I was diagnosed with breast cancer, that I was having the wheat grass because it is supposed to help create an “anti-cancer environment” . . . blah, blah, blah 🙂 (There is all kinds of stuff out there about eating an alkaline diet, low fat, low sugar, high veggies – in particular – lots of greens). I figure I might as well, right?

Anyway, he said something to me that really kind of shook me a bit. He said, “Wow, you must really appreciate every day then.”

Wow. Stopped me in my tracks. I of course said, “Yes, yes I do, definitely.” And, just as I was saying it I recognized that I was not appreciating every day . . . and, that lately, I had not appreciated very many days at all. Which is not like me. But, I have very much unappreciated cancer. And, that is how I let cancer hijack my life . . . for a little bit, anyway.

There is always the treatment hijacking, the surgery hijacking, the recovery hijacking. But, lately, I had let the in between times get hijacked too. Not good. I know how it happened . . . I just haven’t been feeling well. But, with the not feeling well came discouragement, and to my shame, loss of hope. I can not do that.

So Gary of the juice shop on Main Street – thank you. I will be back to see Gary and to get his wheat grass (now that sounds a bit saucy . . . that is not how I mean it though 🙂 )

I mean to appreciate every day, or at least as much as possible, in between the hijackings 🙂

My right shoulder is really locked up, they aren’t kidding when they call it a “frozen shoulder”.

Last night I really started to feel it – having pushed it a bit too much with the physical therapy I guess. Or, perhaps it was due to not doing it enough when I was sick a few weeks back. I don’t know. But, it means I will not be able to play with my band tomorrow night. I am bummed about that. I am especially bummed because I am letting them down . . . I committed to playing and this is the first time that I have had to cancel. Not too happy about that. But, I just can’t do it this weekend. I will really miss it too, I always have so much fun playing. And the place we are booked for is my favorite place to play. But, next month hopefully (we are usually booked once a month at this place). I haven’t played there since last summer, so I am over due. Hopefully I will get in on the next one. So, that is really a bummer.

Hopefully my band mates will understand.

Otherwise, I am feeling better than earlier in the week. So, that is good (it helps to be away from the fumes).

I am sitting at a coffee shop right now, going to do some work – for a change, or should I say for some change . .. 🙂

Last night I did not sleep at all – I was still awake after 5 am this morning. It is frustrating. I was not able to get a whole lot done today – just too tired.

Still, I was able to make a few calls and to take care of a few things today.

Tomorrow I have an echo cardiogram at Hoag in the afternoon. Prior to that I hope to get some things done.

Please continue to keep me in your prayers, I really appreciate it. 🙂

Love and peace,

Lisa

Hello All,

Today I went to Hoag’s Cancer Center for a genetic counseling appointment. My parents came with me. They are amazing.

This session was with a genetic counselor who went over my family history to assess whether the breast cancer I had (I have to always refer to it in the past tense now) was hereditary, familial or what they call “sporadic”. Most cancer is thought to be sporadic, meaning that the cause is unknown. Familial cancers are those that seem to be more common in a family (a certain number of family members that have had cancer, once that threshold number is met, the cancer is considered “familial”), but, do not have a known genetic link. Roughly 90% of cancers are considered sporadic. So hereditary and familial cancers make up the remaining 10%, with hereditary cancer only about 2% (if I remember correctly what she told me today).

In general, the likelihood of having a hereditary cancer is very low. But, certain indicators make it more likely that there is genetic link. One of those indicators is a diagnosis before the age of 45.

There is a blood test to determine whether it was hereditary (this is the test for the BRCA 1 or BRCA 2 gene associated with hereditary breast cancer and ovarian cancer). The cost of this test is between three and four thousand dollars. And, today I found out that my insurance denied it – even though the national guidelines indicate that I should have the test since I was diagnosed with cancer under the age of 45. In addition, the family history of breast cancer and prostate cancer (both of which often have a hormonal component) indicate that I should have this test (according to the national guidelines). I had expected to have the blood work done today. But, as I said, my insurance provider denied it.

The odds that the cancer was from a genetic cause, in my case, is statistically unlikely. However, knowing whether it was inherited or not is very important – not just for my own treatment. For example, women who test positive for braca 1 or 2 have are more likely to develop ovarian cancer. I need to know this in order to best adapt my treatment to prevent a recurrence, and to prevent ovarian cancer. I also want to and need to know for the sake of my family.

The genetic counselor was so good and provided excellent information. She also said that it is more likely that based upon my family history, it is more probable that the cancer was not hereditary. This is good news. But, I need it confirmed.

The genetic counselor told me that I should file a grievance with my insurance provider. She thinks that it should be covered. She wrote a “medical necessity letter” so that I can use this as part of my appeal/grievance. By the time I got home from our meeting, she had already sent the letter to me via email. She made a strong case for coverage I think. It was so nice to get the letter from her so fast, very impressive and very appreciated.

So tomorrow I will get started on the grievance/appeal process. Wish me luck with that.

Please keep the prayers coming my way, I greatly appreciate it.

Much love,

Lisa

P.S. New word – competitant – combination of competitive and contestant . . . this word is one of many that I have unintentionally invented as of late. I will be speaking and then I think of which word I want to use and sometimes combine a few words into one – not intended though. Fun times 🙂 I am under a lot of stress right now – I think that has something to do with my “creating new words”. And, the chemotherapy clouds your brain a bit too. It is as though wires are crossed that should not be. I am told it is temporary. I believe it is as I have periods of time where this happens and periods of time where it does not. The common denominator is stress or recent treatment.

Hello all,

Well, my surgery is officially postponed. I do not yet have a new surgery date. But, the plan is to wait about 5 or 6 weeks. I need time to get physically stronger and to get my head around the surgery. Part of getting my head around it is to see another reconstructive surgeon so that I can get another opinion.

I saw my surgeon this past Thursday. Originally, this meeting was a pre-op meeting. As a result, I was given all of the pre-op forms waivers, releases to sign. That was an eye opener. Let’s just say it underscored my need for a second opinion and . . . I know that I made the right decision in postponing my surgery.

Still no test results.

Thank you for your continued prayers, I greatly appreciate it.

Peace and love,

Lisa

(Note: I started this post on Wednesday evening and now it is Thursday morning – got sidetracked by the Daily Show).

Well, it has been a pretty exhausting month. So much has been going on and my head has been spinning from it all. It has been as if everyday just seemed to come at me and I have not been able to get ahead of it or think straight. But, I am feeling better this evening. Today was the first day off in a long time – I did not have any medical appointments or treatments.

I was able to tend to a few things that needed tending and mostly, just did not have to go anywhere. Well, okay, I did go and get blood work done (and did find out how much better the other people at the facility are at drawing blood – oh well, next time I will make sure I don’t let the gal that did it today anywhere near me. I saw that she was not using the extra thin needle that others use and yet I let her do it, I don’t know why I did not stick up for myself, maybe I was just too tired. I will do better next time).

I still do not have test results.

Tomorrow I will see my surgeon for what was supposed to be a pre-op appointment. I have decided to postpone my surgery a bit. I will be talking to my surgeon about it. I will write more about this soon.

My poor Mom stayed nearly a week straight with me (It was wonderful to have her here with me. But, I know it has been hard for her . . . and for my Dad too. This past week was unusually difficult – so many medical things. It really feels like it has been a month instead of a week. But, it will get better and I am so blessed to have my parents, so incredibly blessed.

Well, it is late/early now, so I had better get to bed. This is what happens when I am alone – I stay up way too late. I will endeavor to do better on the sleep front.

Thank you for your continued prayers 🙂

Love,

Lisa

Hello All,

I still don’t have test results yet. So, maybe tomorrow.

Tomorrow was supposed to be my pre-op appointment with my reconstructive surgeon. But, she had to postpone until Thursday. Also, I do not plan on having surgery on the 29th as was scheduled. We are still having the “pre-op” appointment to discuss the surgery and rescheduling it.

I spoke with my surgeon’s nurse yesterday about some of my concerns about having surgery so soon – one being that I had strep throat a week ago. I am not keen on having surgery so close to the strep throat. The nurse agreed.

So, I will know more about my surgery on Thursday.

Please keep me in your prayers.

Love,

Lisa