Archive | March, 2010

Sunday . . .

14 Mar

Today is an improvement over yesterday. So, that is good. Still, just don’t feel so hot, but improving.

There is so much to do before my surgery on March 29th. I am pretty overwhelmed. I have multiple things (tests, doctor appointments etc.) scheduled pretty much everyday. I think the latter part of the week before surgery is more clear – and hopefully it will remain that way. 🙂

Tomorrow I may be getting results from the tests/exams from last week. I was told either Monday or Tuesday.

Today I have to complete a genetic history for a genetic counseling test I will be having on the 22nd – they will go over my history with me and do the Braca 1 and 2 test for breast cancer.

I know women with breast cancer who have tested positive for this test and women who have breast cancer who have not tested positive for braca 1 and 2. But, I need to know for my niece’s sake (and for my brothers’ sake too as men can get this disease) and also for my own (I found out recently that women who are braca 1 and 2 positive have a 40 to 50 percent increased risk of developing ovarian cancer). So, I need to know.

We had some excitement this afternoon – my Dad and I were walking our respective dogs and we had a run in with two, very large, doberman dogs. The dogs were just running lose. They were huge. The owner came after the dogs, but neither dog had a collar on and the owner could barely control one of these dogs, let alone two. So one of the dobermans came right up onto me and my dog – after first going for my parents’ dog (very small dog – a Morky – half Maltese and half Yorkie). It all worked out, but, it was a little intimidating to say the least. The dog was so big.

Well, it was a lively walk 🙂

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

Love and peace,

Lisa

Saturday . . .

13 Mar

Things are so hard today. I am so tired and in pain. I just do not know sometimes and I feel like I am weak. But, I have made promises and I need to keep them. I need to get through this. I just wish there were an easier way. I am ashamed to even write this today. But, I am so very tired of the hurting and exhaustion that I feel. I know there will be better days. Today is just not one of them. I can only write this because I know my parents are not reading it. I love them so much and it pains me so much to be their burden, to see them see me suffer . . . it is the worst.

Scans today

12 Mar

Hi All,

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

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

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

Love and peace,

Lisa

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

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

I felt the wind through my hair

12 Mar

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

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

Egret, Bolsa Chica Reserve

Treatment Day

9 Mar

Hi All,

Today was a treatment day – my Herceptin treatment. So tired now. But, glad it is over with. My parents will be coming over in a few hours (meanwhile, I am going straight to bed). My folks will spend the night so as to look after me tomorrow. I generally do not feel to well after the Herceptin treatment. I am hoping that tomorrow will not be too rough. But, we’ll see how it goes.

I have a lot of tests coming up prior to surgery (pre-op stuff and then other things – a biopsy, an ovarian ultrasound, bone scan, echocardiogram – it seems like everyday is booked with this kind of stuff). I spent yesterday scheduling it all, trying to make sure that I don’t schedule too much for one day, one week etc.

I am going to physical therapy as much as possible right now to make as much progress between now and surgery. I have what they call a “frozen shoulder” (right shoulder). Since my surgery this month will involve the left side, I need to get as much increased range of motion out of my right arm/shoulder so that I will have good mobility after surgery.

This surgery is supposed to be much easier physically than what I have already been through – I certainly hope so. Plus, the last surgery was on the heels of chemotherapy, so I was not at my best physically. I am much stronger now and so hopefully that will help me get through this next surgery and recovery smoothly.

Well, that’s all for now. I am beat. Going to bed and hoping for a good day tomorrow.

Love and peace,

Lisa

One year ago . . .

6 Mar

Last year, on Friday, March 6th, I received the phone call from my doctor, at 4:00 pm, confirming that I had cancer. He couldn’t tell me anything about my cancer – wasn’t allowed to since he was not an oncologist. I remember shaking as I wrote down his fax number so that I could fax my written permission for him to fax me the “results” of my biopsy.

I sat in my office and waited for the fax line to ring. And there it was in black in white – a bunch of numbers – none of which (to me) looked good. I remembered just enough from my attempt at majoring in biology to know that words like “mitotic” index had to do with cell division, growth. The numbers were high and I spent the weekend thinking, this is it, I’m done. Three months? Six? How many?

I knew it somehow in my soul, mind, heart (I don’t know really where or how) before the 6th. I knew it weeks earlier. Not sure how, but, I just knew that I had cancer. But, it wasn’t until the biopsy results came back on March 6th, 2009, that there was actual proof. It was one of the hardest days of my life – and far worse for my parents and family.

My parents drove to meet me at my office immediately. A friend was already there and stayed with me until my parents arrived. I told a friend down the hall whose sister had been through her own breast cancer ordeal.

That night my brother Paul and my sister-in-law Marcella came over. My parents stayed with me I think the whole weekend. My brother Steve drove up the next morning with his kids. My niece Julia Anne (who is named for my Aunt Anne who died of breast cancer) came to my door alone – brother and nephew waiting in the car – so that Jujubee (that’s been my nickname for her since she was a baby) could see me alone first.

She grabbed hold of me so tight and began sobbing. We stood there in my door way holding each other and I promised her that I would be fine, that I was going to be here long enough to be a great aunt to her children someday. That seemed to work.

The rest of the weekend was pretty much a blur. Other than a private walk with my brother Steve at the park across from my home. Breaking down in the kitchen and trying to hide that from my family, my brother Paul telling me it was okay to cry. The t.v. on (thankfully way too loud) with one of the “Harry Potter” movies blaring and my 8 year old nephew seemingly engrossed in it – but keenly aware that something was very wrong.

Words like chemotherapy and radiation were tossed about. Surviving, eating cancer fighting foods, etc.

It was a weekend of my loved ones being near me, all of us at some point or another crying and me reassuring everyone that I was going to be fine.

But, that weekend, last year, in my head I thought I was the walking dead.

It would not be for some weeks before I would find out that in fact my cancer was caught early enough to be cured. No guarantees of course. But, it was a far cry from what I feared – being told that I didn’t have a chance.

And, since then I have been on my little cancer roller coaster. 🙂 Ups and downs and the ups have been sweet. I have made my way through this past year with the help and prayers of so many and I am so grateful to all of you. I would not be here in the way that I am here, without you.

So, today, one year later, is a much better day, a much better weekend, to say the very least. And I owe that to so many people. My parents first and foremost and there is a long list after that.

I am here and I plan on sticking around.

Thank you for your continued prayers.

Thank you for everything.

Much love,

Lisa

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Cancer Bridges Dot Org

2 Mar

Hello All,

Well, I decided to spend 10 more dollars that I don’t have 🙂 (today was a very expensive “cancer” day, more on that later . . . maybe). The extra 10 was spent on a domain name that I am thinking of using in the future for the nonprofit that I intend to establish. I am thinking of the name Cancer Bridges – it would be: cancerbridges.org

What do you think of the name? Here is why the name appeals to me:

I have found firsthand that while there are many organizations raising money for a cure to cancer, there seems to be little available to the current cancer patient in the way of financial support. Don’t get me wrong, there are some really great organizations that provide financial assistance to cancer patients. But, these are very limited in what they pay and for how long. In many cases, the applications are exhaustive and, as I found out, funding was either not available (even though I qualified) or I was no longer eligible because I was no longer going through chemotherapy or radiation. I worked full time during chemotherapy. I also tapped into savings (naturally) and for most organizations, until you exhaust your resources, you are not eligible (I understand this). But, in my case, that meant that what qualified as the “treatment/eligibility period” was over – but, I was not able to yet return to work.

As a single person, I have my own unique challenges as well. But, it is is no walk in the park for anyone. And, while I have excellent health insurance, the costs of treatment (despite excellent coverage, are very high). Tack that on top of a period of time in your life when you are not working because you can’t and well, you see the picture.

I have learned so much this past year. I have learned how truly wonderful human beings can be. I have been inspired by so many and encouraged by so many. I have had mentors and formed great new friendships that will surely be lifelong and I am grateful beyond belief for all of that and for my incredible parents. I have also had to to be my own “cancer soldier” (in so many ways, way beyond what I would ever have imagined). And, in the future, I want to be a cancer soldier for others. When I am ready and able.

Breast cancer patients have a particularly challenging situation because your physical down time can go way beyond what is considered part of “treatment” (your treatment period being about the only time their is any financial aid available to a cancer patient – I mean it, American Cancer Society, Susan G. Komen, Beckstrand Foundation, Breast Cancer Solutions and many others – all fantastic organizations. But, all either limit their funding to the period of time you are receiving chemotherapy, cancer removing surgery or radiation or – they simply do not really have much funding available to be able to bridge the gap). Breast cancer patients who undergo mastectomies most often undergo reconstructive surgeries after “treatment”. This means additional down time and recovery and for some – complications. The point being, it just doesn’t wrap up the moment you are done with chemotherapy or radiation.

And, this is true for many cancer patients. It takes time to recover from chemotherapy and it can take a great deal of time to recover from radiation. With chemotherapy – it is all over the map – some people tolerate it better than others – some chemotherapy “cocktails” are more difficult than others to tolerate. And, cancer patients come in all ages, sizes, levels of health and have needs that go way beyond the “treatment” period. With radiation, recovery times are also all over the map – weeks, months – again, it all depends upon the dose a cancer patient receives, the area (how large) that is treated etc.

So, it just doesn’t end right when you finish your last day of treatment. I am still going through treatment. I have finished chemotherapy and radiation, but still have Herceptin treatments to complete. Then, assuming all goes well, I will be done with the cancer treatment phase. Still, for some reason, Herceptin doesn’t seem to be on the list of cancer treatments that give you eligibility for monetary aid (despite the fact that it knocks you out for a time afterwards and also takes a toll on your immune system). But, some women tolerate better than others and so perhaps that is why it is not on the list.

The other problem that I see (and have experienced firsthand) is simply that I did not find out about these organizations in time – there was no portal, no one providing information about the different resources out there. So, by the time I found out about these organizations (that provide aid for a limited period of time – in the beginning – it was too late. Plus, I probably would not have qualified at that time as I had money then. So there is a void out there and it is my intention to fill it, fix it.

Hence my idea of creating a “cancer bridge”. Two fold – 1) raise money for patients undergoing cancer treatment – and in particular, provide assistance during that void time and 2) create a portal – sort of a one stop center for finding resources.

I don’t understand it (although maybe I do), but, it seems to me that some of the organizations out there – all with the same goal of helping cancer patients in need – are competing with each other. At least, that is the feeling I had as one would never mention or inform me of another organization (even when their organization could not help me).

As a business owner, I know my market and I know all of the players in it. I can not imagine that cancer non-profits are some how unaware of other non-profits that are out there, ready and able to assist. But, for some reason, some of these non-profits seem to want to keep you with them – even if they can not help you – rather than send you to alternative resources. This is not true of every non-profit, but it certainly seems to be true of some – at least that is what I experienced. And maybe it should be your oncologist who simply provides you a list of the resources out there and the time frames for eligibility and what each resource can provide to you. Certainly, a law could be passed requiring this – it is already required that certain pamphlets be provided (these are created by the state) to breast cancer patients about their rights etc.

So, that is my goal – start up an organization that creates a portal for all of the wonderful, already in existence non-profits (with their time frames and eligibility requirements) and also find a way to bridge the gap between the treatment period where it is clear a person can not work and the period of time where, for example a breast cancer patient is unable to work because of reconstruction surgeries, or another cancer patient is simply not recovering from radiation treatment soon enough to go back to work (yet assistance may not be available to him or her).

Time to go to bed, have an early appointment tomorrow. So it is time for some shut eye. By the way, today was incredibly busy and eventful. Some good and some a bit rough. I don’t want to write about that now, I am looking ahead and looking forward. 🙂

Please continue to keep me in your prayers and don’t be afraid to say hi here, leave me a comment. I always appreciate it.

Much love to you all,

L.

A Really Good Monday

2 Mar

Hi All,

Just checking in. I had a great day today. I got so much done (yeah) 🙂

I had a lot to do today (or this week actually, but ended up getting quite a bit of it done today). I felt really energized and motivated.

I have been really starting to feel a lot of pressure with surgery coming up this month – knowing that I have a lot to do before surgery. So I spent some time Sunday figuring out what I needed to do and made my list and started tackling it today. I had a bunch of medical stuff to arrange (pre-op tests, making sure the right tests are ordered, getting these authorized by my insurance, scheduling appointments – physical therapy sessions, just routine things). Anyway, it all went really well and I was able to check off a lot off of my list.

I also found out that my surgeon postponed my surgery by one week. So, instead of having surgery on March 22nd, it is now scheduled for March 29th. I am so very pleased. I had been feeling really pressured about it being so soon. But, at the same time, I want to get it over with and move on. I expressed this to my surgeon in our last meeting. But, she didn’t seem to be too sympathetic. I told her that I wanted more time so that I could become physically stronger. Anyway, I called her office today to schedule our pre-op and found out that she had pushed my surgery date out a week because she knew that I had wanted more time. Pretty nice – although, I am not sure when she was planning on letting me know about the change in date 🙂

But, I am not complaining. The 29th is good. It gives me more time to improve my physical strength, more time to prepare my home for after my surgery and just more time to mentally prepare. I am looking forward to it on some levels, but mostly just looking forward to having it behind me. 🙂

Anyway, I am just delighted that she made it for a week later. Such good news. I now really feel like I have time to get everything done. Plus, I really need to have time to have some more fun. It has been such a blessing to finally feel as though I am recovered from the radiation and to be physically up to more than before. Last week I played the bass (on stage) for the first time since last summer. I was pretty darn sore the next day. But, now I feel fine from that. And, I may play again this weekend. I am not sure yet. We’ll see how it goes.

It is funny how much of a difference a week makes, at least mentally.

So tomorrow is another full day in Newport. A couple of appointments one in the morning and one at the end of the day (physical therapy being one of them – I can’t wait to get back under Dana’s hands – she is helping me make SO much progress) and I will be working on a project in between. So it will be a nice drive down PCH tomorrow morning and then a full day.

Well, I should be asleep right now, so I will call it a night.

Please continue to keep me in your prayers.

Love and Peace,

L.

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