Tag Archives: health

Santa Monica . . .

19 Dec

Hello all,

I want to thank everyone for their support, kind words, messages, prayers, positive vibes and love.

I saw my oncologist today. It was a quick appointment. I had hoped that I could see the nurse so that I would get more of a physical exam done (the nurse does a more extensive physical exam and I was hoping she would do that and give me some reason to allay my fears a bit, as in, well, I don’t feel anything suspicious). But, I knew that my oncologist would order a breast MRI. It is the only way to tell if there is something going on there. So, my appointment pretty much went as expected.

Menopause Three

Seriously? "Menopause, the Musical"??? (Image by David Jackmanson via Flickr)

I was also chastised for not petitioning my insurance company’s denial of the genetic testing (to determine if I have the Braca gene or not). I will get on that tomorrow. It is so stupid that my insurance company denied it when both my oncologist and the genetic counselor requested it. There is no basis really for my insurance company to deny it. But, they did. Anyway, it is nothing new, battling with insurance companies. But, it is something I decided to take a break from doing (since at one time it was pretty much a full time job – back during chemo – it was a constant battle to get meds approved – the same meds each chemo round would get denied . . . as if I was no longer in need of the medication . . . very odd). I would love to some day make a change in that, I don’t know how someone who is elderly or sicker than I was copes with all of that during treatment. But, I digress.

I need to get off my butt and file the petition and make my insurance company do what they are getting paid handsomely to do.

The other concern my oncologist has is that I am still ovulating (or at least that is what she thinks given I still have pretty regular menstrual cycles despite all the chemo, despite taking Tamoxifen) . . . I know, aren’t you all thrilled to hear that?!! TMI, right?!!

The point is that I am still pre-menopausal, still producing estrogen (the hormone that the cancer I had loves) so that is a concern. Tamoxifen often causes menstrual cycles to stop (as does chemotherapy). When a woman goes into menopause from chemotherapy it is called “chemical menopause”. Some women never come out of that chemical menopause. I had that during chemo. But, as soon as I finished chemo, my ovaries kicked right back in. At the time I thought that was a good thing, thought it was a sign of my body being resilient. And now that I have been on Tamoxifen, but, am still having menstrual cycles well, it is not something my oncologist is very happy about I guess.

I am not really certain about that actually. Except that she keeps asking me “are your ovaries still kicking?” (which kind of bothers me a little bit, sort of, okay, maybe I am being ultra sensitive . . . I LOVE my oncologist, she is so great and I owe her so much, I really believe that I owe her my life. BUT, this whole, why-aren’t-I-in-menopause-yet thing is really getting kind of annoying.

Her concern is well placed . . . the more estrogen the worse my chances of a recurrence since the cancer I had was fueled by estrogen (and by HER2 gene expression – if I am even saying that right, don’t know that I am, so don’t hold me to it, I am too tired to look it up). Premenopausal women with estrogen responsive breast cancers do not get as much of a benefit from Tamoxifen (Tamoxifen is more successful in post-menopausal women as are the alternatives – aromatase inhibitors). Still, Tamoxifen is shown to help reduce the risk of recurrence in pre-menopausal women too, it just isn’t quite as effective.

Anyway, I am rambling. I’m thinking I should wrap this up.

Okay, so the upshot of my appointment was exactly what I expected: get an MRI. Hopefully it will show that everything is fine. The pain I am having can be due to surgeries and the redness can be from the radiation I had to that area (skin changes can occur for many years to the areas that have been radiated). Anyway, that is the latest.

It is unlikely that I will be able to get the MRI before the end of the year . . . which is just fine with me.

So, now it is back to planning Christmas dinner . . . going to repeat the Tapas Christmas dinner I did last year (although different dishes).

No turkey here . . . unless I decide to go for turkey empanadas . . .

I am so over cooking Turkeys, Hams or Crown Roasts . . . don’t think I will ever do that again. We had so much fun last year doing the Tapas dinner that we decided it should be a new Christmas family tradition. So there we are. I plan on thoroughly enjoying the holiday and putting all of this cancer crap out of my mind.

This morning I visited a friend of mine who had breast cancer surgery today. This is her second time through breast cancer and it will hopefully be her last. She is strong and beautiful and courageous and I am grateful to know her.

I don't know anyone who can rock a surgical hat like this woman 🙂

I will go see her tomorrow (her surgery was today). I am hoping and praying that the pathology report is good. Some women have what is called a “complete response” to Herceptin and chemo treatments prior to their surgery (meaning that when they get to surgery there is no more active cancer left). I am hoping and praying that she gets good news.

Please keep me and my friends (who are still waiting on results) and my friend who is currently having surgery for breast cancer in your prayers. This cancer stuff seems like an epidemic some times.

Well, all is well for now. I am sitting in a cafe in Santa Monica waiting for the traffic to improve before I make my way back home. I have to say the people watching here is great!

Third Street Promenade . . . one of the things I enjoy about my oncology appointments . . .

Thank you for your continued prayers and support.

I wish you all a wonderful holiday, peace and health!

Love,

Lisa

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Birthdays . . .

30 Nov

Yesterday was my birthday. I had lots of things swirling through my head yesterday. Birthdays are kind of weird for me now. Mostly I am just grateful to have had yet another birthday and extremely grateful to have one that is cancerfree.

This same time in 2008 I was sick, but, didn’t know it yet. Well, that isn’t quite true. I knew something was wrong. I just didn’t know that it was cancer. I was tired all of the time. My body ached. I had intense night sweats. I was told by my doctor that these symptoms probably meant that I was going into early menopause. It never occurred to me or to my doctor that it was in fact breast cancer. But, a few months later I would have a mammogram come back with something suspicious and then everything suddenly made sense – I instantly knew why I was so incredibly tired all of the time.

Marahon shoes

Fast forward through a couple of years (wish I could have . . . ha, ha, ha) of cancer treatment and multiple surgeries (months of chemo, followed by a bi-lateral mastectomy, followed by multiple hospitalizations for post-surgery infections, 6 weeks of radiation, a year of Herceptin infusions, months of daily nurse visits to administer IV antibiotics for the post surgery infections, two reconstructive surgeries – still one more of those to go – lots of trips to the ER and probably a few other things I can’t remember) and here I am . . . on the other side of it all. Or so it seems.

So, this is a birthday that I did not know if I would have. Of course we never know what tomorrow will bring. But, having clawed away through most of that first year post diagnosis to be here, it is really quite something to still be here.

Last year on my birthday I was recovering from surgery. The preceding birthday I was going through radiation treatment (had finished chemo and made it through the first surgery a few months earlier) but, still had two more surgeries and half a year of Herceptin infusions ahead. When I look back on the last two birthdays it is amazing to me that I am as well now as I am.

I don’t know how many more I will have, no one knows how many birthdays they will have. But, it is really something to be here in this way today. Last year was tough, the year before was kind of almost not really bearable. In fact, I remember wondering if I would have another Thanksgiving, another Christmas . . . you get my drift.

Since being diagnosed in 2009 I have met and become friends with many cancer patients. I have lost friends to the same disease that I have, at least for now, somehow managed to survive. It doesn’t make any sense. And, I am well aware of the fact that it could come back any day and simply strike me down. That is cancer: it comes, and it it always goes . . . it is just a matter of whether it takes you with it or not (and I mean that both literally and figuratively).

Last February I stood and watched a friend of mine cross the finish line of a half marathon. I remember how difficult it was for me (not even one year ago today) to simply stand there for 20 minutes waiting to see my friend cross the finish line. I was still so tired and weak. I remember hanging onto a chain link fence for support and wondering if I would make it through (kind of the way cancer treatment and recovery is like . . . hanging on and wondering if you will make it through). I promised myself last year that I would be crossing that same finish line myself some day.

So tomorrow I am buying a new pair of running shoes (compliments of my parents – their birthday present to me). I have ten weeks to get myself, and my new shoes, ready for a half marathon. I fully expect to walk a significant part (if not all) of this “run” but, I don’t care. I just want to get through the 13.1 miles and cross that finish line. Wish me luck 🙂

I am very thankful for this birthday. And, I am so incredibly thankful for my family and friends – without whom I would surely not be here in the way that I am.

Love and peace,

Lisa

 

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Komen: Please Leave Me Alone

31 Oct

Today I was yet again, hit up for money by the Susan G. Komen Foundation for the Cure. This is what they had to say: “take advantage of these last few hours to show that YOU care and want to a make difference in our community” and “let’s use these last few hours to save as many lives as possible”

Here is my response to them.

Dear Susan G. Komen Foundation for the Cure:

I am a breast cancer survivor.

I was diagnosed in March of 2009. My Aunt died of breast cancer in 1994. At the time of my Aunt’s diagnosis I was in law school and Nancy Brinker came and spoke to the women’s law association at my law school. She was there to promote her foundation in her sister’s honor and to urge us all to get mammograms at age 40 and to do self breast exams. At the time I met Ms. Brinker, I could not help but wonder why it was that my Aunt, who was at that time suffering through chemo (and doing so simply to extend her life long enough to see her first grandchild born) had never had any contact with the Susan G. Komen Foundation for THE CURE. I listened to Nancy speak about her sister and about her pledge to “end breast cancer forever”. And, like many, I believed that she meant well. But, no one from her foundation every helped my Aunt. Still, I thought, well, maybe they are so busy “racing for a cure” that they do not have time or resources to help a dying woman . . . my aunt, suffering through chemo, no cure could come in time for her . . . and, after all, that is what Nancy’s foundation was racing towards . . . a cure.

So my family cared for my Aunt until she died. Her children, her sisters, her husband, friends all showed up. But, nothing from the Komen Foundation. But, then, that wasn’t their job, was it? No, they were busy racing for a cure.

So, after my Aunt succumbed to breast cancer (after she spent her last days unable to handle medical costs or afford basic comforts) I ran in Susan G. Komen’s Orange County Race for the Cure in her honor. I truly believed that my doing so would somehow make a difference. After all, Nancy’s goal was to “end breast cancer forever” and I was certainly behind that.

Fast forward to March of 2009 and through a routine mammogram I was diagnosed with an aggressive form of breast cancer.

I again showed up to your Orange County Race for the Cure. I was going through treatment, going through surgeries, battling infections, battling my insurance company, trying to survive without an income . . . I sought help from your organization. I sought help from you because you claimed – on your very own website – to provide financial assistance to women going through treatment. I desperately needed your help.

I called day after day after day the number that was provided on your website to apply for financial assistance. I called multiple times a day over a period of months. Each time I called there was an outgoing message saying that “no one was available at this time, please call back later”. There was NO way to leave a message. I searched your website repeatedly looking for an email address or some way of contacting the person who handles the financial assistance that your organization claimed to provide. There was nothing, no email, no point of contact, no way to leave a voice mail message. Instead, just a teaser (and a bragging statement about how you help women with the costs of their treatment).

I finally called the Orange County chapter. I explained that the New York Chapter that is the ONLY chapter that apparently has the authority to provide financial assistance to women going through treatment, did not ever answer their phone. I was transferred (after multiple calls and complaints to the OC Chapter) finally, to the director of the Orange County Chapter. I explained to her that I had not been able to reach anyone for months, that no one answers the phone in New York, that there is no way to leave a voice mail message. The OC Director immediately said, and I quote: “Yes, I know, they don’t answer their phone. Have you tried calling the Salvation Army? They can help you with your utility bills. Have you tried calling the American Cancer Society? They can help you get information on clinical trials. Have you called the Lance Armstrong Foundation? They can help you get emotional support and match you up with a survivor who has had the same kind of cancer as you.”

I was so dismayed, disappointed, crushed, heartbroken, devastated.

Meanwhile, I was undergoing Herceptin treatments and radiation and recovering from surgeries. I was unable to work. I was broke. I was lead to believe – through Komen’s own web page – that if I was in financial need that some of the nearly 400 million dollars that was raised that year could be used to help me while I was in need.

I am not one to be looking for handouts. I raised money for Komen. I have raised money for other cancer organizations. I was under the mistaken belief (as was everyone I know, all of my friends) that Komen actually helped out women who were in my position.

Not true. At least, not in my experience. And, clearly, from the OC director’s response, it is typical that no one answers the phone in the New York office – THE chapter charged with the responsibility of helping cancer patients with their treatment costs, and financial assistance. No other chapter at that time had the ability to provide financial assistance. All requests had to go through their chapter. I am certain that I made over 100 calls to that chapter – calling the number that was listed on your site for financial assistance. After the 30th call or so, it simply became a game, a “let’s see how many times I can call and not get a live person and not be able to leave a message” game. It was unbelievable.

I have shared this story with many . . . many who in the past donated to your organization who now will no longer donate to your organization because like me, they feel your organization is a fraud.

I was mislead. My family and friends were urged to donate to your organization believing that you would donate most of their donation towards either research or paying for someone’s treatment. Neither of those are true.

You say you want to “end breast cancer forever” yet, you spend about 19% of the money that you TAKE from good hearted people towards research.

We are all very aware of breast cancer. If you still think creating awareness is a necessary goal, then make it clear that the money you raise is going to awareness. But, instead, you trademark the language “for the cure”. Instead, you state that your mission is to “end breast cancer forever”. How can that be when you only spend 19% on actual research.

How can you claim to be helping women with breast cancer when the phone number that you dangled out there on your website to call for financial assistance has no one, EVER, at the other end.

I have found out through my own personal experience how little you actually do towards racing “for a cure”. My cure, if I have one at all is in spite of you. My survival, if I survive, is in spite of you. My ability to survive financially, to navigate the difficult insurance and medical bill waters, is in spite of you.

I will spend every last day of my life (however long that will be – by the way, I expect it to survive a very long time) making everyone I know aware of what you have not done. I want to believe that your organization stemmed from a desire to make positive change, to help those in need and to work towards a cure for breast cancer. But, my experience – up close and personal – has told a different story. I have received no help from your organization. When I have actually spoken to a live person at Komen, they have referred me back to the American Cancer Society, to the Salvation Army, to social workers that my hospital “might have on staff who could help me find financial resources”.

So, while I expect nothing from you, I do have this one request: STOP, please STOP asking me to donate money to you. Please stop asking me, a breast cancer patient who you ignored, who you mislead, for money. Stop asking me to buy your nearly hundred dollar bracelet every year. Stop asking me to purchase your toxic chemical containing perfume. PLEASE, please, please, just leave me alone.

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There is light at the end of the tunnel . . .

25 Jul
Crowded summertime beach in Avalon, Santa Cata...

Avalon

It is funny how sometimes when you are forced (or force yourself) to do something difficult, it becomes easier.

I have to study for an upcoming professional exam. I don’t mind studying, I actually have always enjoyed it. But, since cancer my body is not the same. Things that were once quite easy can sometimes be very difficult. One of those things is sitting in the same position for a long time . . . something you kind of need to be able to do to study (at least I need to do it that way). Well, I started studying in short time frames and built up to longer time frames and now, while I can’t say I am back to my normal study stamina, I am definitely in a far better position than I was even just a few weeks ago.

So, I have been forcing myself to sit and study for as long as I can without taking a break. Then, when I absolutely have to, I take a break and return to it. My body hurts, my legs and arms go numb and it is uncomfortable and irritating. But, it is what it is. AND, I am quite happy to report that what I can do today is vastly more than what I could accomplish even just a few weeks ago. It really has in its own way (my studying) been a type of physical therapy.

I can only imagine how much better I will be after a few more weeks and then a few more weeks and so on.

The most challenging thing for me post cancer has been the feeling of losing my old self. I don’t mean losing my breasts and having my old breasts replaced with scarred up “reconstructed” breasts. Nope. I chose a bilateral mastectomy. I had cancer in one breast and chose to have both breasts removed. That choice made me feel empowered, not depressed, strong, not weak . . . and in some small way in control.

My point is that I am not so bothered by the scars on my body. It is the physical limitations (pain, exhaustion, lack of energy) that bother me the most. And it is those things that make me feel less like myself. (And, a little pissed).

Nowadays, post cancer, I often find myself having to choose which things to do in a given day, a given week, etc. simply because I don’t have enough energy or pain free time to do what I normally would do. And, I have found that very frustrating.

For example, recently I spent the day with friends on Catalina Island. It was a wonderful day. The weather was perfect and the company even better. But, knowing that I had this day trip planned meant to me that I had to figure out how much I could or could not do the preceding day and week because if I did too much, I would then be too tired for Catalina. It is like having a bank account without enough funds to meet your expenditures. I am in the red physically.

So it goes . . . my post cancer existence. And just so I am clear – I don’t mean not partying until 2:00 am the night before (that isn’t really my thing anyway). I mean not “over-extending myself” the day before – which can simply mean – letting the laundry go another day, and simply taking it really easy. On this occasion, it meant turning down a last minute dinner invitation. I couldn’t just say, “hey, I would love to come, but, I have a big day tomorrow and doing both will be too much for me” . . . or . . . could I? Instead I said, “I would love to, but, I already have plans” (yeah, plans to lie in bed for the rest of the night . . . argh).

It is a balancing act and I am getting better at it . . . better at knowing my limits and better at pushing my limits too.

This studying has been a wonderful thing because it has definitely improved my physical stamina for concentrated work (something that makes me very, very happy).

Prior to cancer I was working on a new book. I had to drop work on it during chemo because my brain was, well, fried. And looking back now on some of the blog posts I wrote during those days, I am certain that it was a wise choice to postpone finishing the book (chemobrain is real, at least it was for me).

But, after the past several weeks of studying, I know that now I could sit down and write for hours in a day. And that, my friends, is a huge, huge deal because it means that I am that much closer to getting my life back.

I know I will still have to make choices between which things I can do in a given day or week. But, the feeling I have had of being sidetracked by this disease is beginning to fade. I am dismissing it every day that I force myself to sit through the discomfort and study. It is a good feeling. Oh, and a day trip to Catalina Island with great friends is a pretty good way to leave some of the leftover pains from cancer behind me too.

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I am pinkified . . .

29 Oct

I just realized that all of this pink has caused me to be emotionally nauseated. Not actually physically needing to throw up . . . but, just sick somehow . . . like I wanted to throw up in my head . . . (now you’re probably thinking I am really looney). I have decided that I kind of despise October. October used to be candy corn and orange and black and pumpkins and bags of individually wrapped candies . . . it used to simply be Autumn.

Now, it is just pink.

It has taken me a while to realize what has been making me feel so down these past few weeks. The sea of pink. The “would you like to donate to breast cancer research” every time I am at the check out stand of the grocery store. The displays of pinkified products practically blocking the entrance to my local grocery store. (By the way, this is all junk food mind you . . . not a single food item with pink on it that doesn’t contain something nasty for you in it – but, that deserves its own blog post).

This putrid, every-where-pinkification just doesn’t work for me at all. I get it, I know it is important that we all are aware of breast cancer. But, trust me . . . I AM aware of it and there is no doubt that everyone I know is also painfully aware of it too.

I have had my own awareness, thank you. My family and friends have all had this awareness too. I have not written in a little while. Mostly because I had nothing to say, well . . . nothing I wanted to share. I have been angry, I have been sad, I have cried a lot in the past couple of weeks . . . something I thought I was done doing. Apparently not.

Today I suddenly realized what I think is at the root of my recent emotional rollercoaster . . . it is all of this awful pink. It is just everywhere . . . I cannot escape. I am forced to think about it . . . about breast cancer . . . constantly.

I shop almost everyday . . . I do this because I try to eat fresh food and so most days I am running up to the grocery store (it is just a few blocks from my home). I think the grocery store is the worst place to go during October. An online friend, and fellow HER2+ breast cancer patient, has been posting photos of pink products on her facebook page and has encouraged others to do so too (you can see her blog here: http://www.chemobabe.com).

It runs the gamut from breast-cancer-awareness duraflame logs and household cleaning products to pinkified hamburger helper. Duraflame logs are not healthy to burn in your home . . . really. And, don’t even get me started with the chemicals in a box of hamburger helper.

Thanks, but, this isn't the kind of help I need

At first these pinkified products were funny, entertaining. It became a game to find the most bizarre pinkification. I even started taking pictures of pink products when I was at the grocery store. But, that was then . . .

Sometimes all of this pink just feels like salt on my wounds

Now? Well, all of this “awareness” has given me a month long head and stomach ache. I don’t want to live and breathe breast cancer. I am still recovering from my most recent surgery. I am still battling this disease, and the reality of an uncertain future, in my head. I am still facing frequent doctor appointments, tests, blood work . . . I am booked with medical stuff well into December already. And, there seems to be no end in sight. But, it is what it is. I deal with it and I hope and believe that one day I will go for months without doctor visits, needles, pokes, prods and scans . . . I dream of having years at a time free from all of these constant physical reminders of what I have been through.

And I know that I will never really be truly free of it . . . not unless and until I forget what I used to look and feel like – that scar free, pre-cancer self . . . not unless or until I regain enough of the old Lisa that I don’t miss her anymore. You see, I simply do not need all of this pink. I AM aware.

Fortunately, Pinktober is almost over. I look forward to saying goodbye to this pernicious pinkification . . . at least for another year.

Love and peace,

Lisa

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Thursday . . .

21 Oct
Pastinaca

Parsnips - these are going into my stew 🙂

Well, I had two straight days without a headache. But, now it is back. Dang. It just wears me out. I am really getting tired of this whole thing. This roller coaster ride started 20 months ago. For the past 20 months, I have been in some kind of physical pain every day, it is just a matter of degree. I don’t like to focus on it. It is somehow harder now as I realize that there just simply is not some bright line date where it is “over”. I am still recovering from my last surgery, so I know I should not presume that this is how it is going to be . . . eventually I will be healed from the surgery and that will certainly account for some improvement. But, I am so sore all of the time, my bones ache and I am told that is likely from the chemotherapy. And it may not improve. So annoying. I am, was anyway, a very active person. Right now, just doing the simplest things wear me out. I went to the grocery store to get ingredients for a vegetable stew that I want to make. I found a slow cooker recipe for a root vegetable tagine – it looks very good. Anyway, by the time I got home from the grocery store, I was too tired and in too much pain to do anything.

I am sure my energy level and pain level (God, I hope so) will improve. It just has to as this is really not such a great way to live. I hate this so much, hate writing it, hate feeling it. I have not had a normal nights sleep since my first surgery back in August of 2009. I am hoping that with physical therapy (which I am supposed to be able to start in the next few weeks) that this will improve. Right now I can only sleep on my back. The trouble with that is that my arms do not lay flat, or, I guess it is my shoulders actually (in particular, my right shoulder) that does not lay flat when I am on my back. So, it is painful to lie down, but, obviously necessary. I try to prop my shoulders and arms up with a pillow so that laying on my back doesn’t force my shoulders back in a painful way. But, inevitably I move in the night and so I am never asleep for long.

In the scheme of things, this is nothing. Nothing compared to the months of chemo and radiation. But, somehow, this stuff is harder for me to take now . . . maybe it is because I expected things to be over with by now, maybe I expected to be better, feel better and to truly be able to get back to my life. I am having doubts about working full days. I want to, I need to . . . but, things like cleaning out my refrigerator are too physically taxing . . . clearing off my desk (which I so desperately need to do) is too physically demanding. I have to make choices throughout the day . . . do I do this or do I do that? Because I know that either one will leave me in need of having to go back to bed for a while. I am SO sick of my bed.

Well, I am sure things will get better. I am just getting a bit fed up and I am feeling pretty impatient I guess. Maybe that is a good thing. I don’t know.

Wish me luck 🙂

Oh, and here is the recipe for the Root Vegetable Tagine . . . I am going to add organic beets to this recipe . . . I will let you know how it turns out 🙂

Slow Cooker Root Vegetable Tagine

Ingredients

  • 1 pound parsnips, peeled and diced
  • 1 pound turnips, peeled and diced
  • 2 medium onions, chopped
  • 1 pound carrots, peeled and diced
  • 6 dried apricots, chopped
  • 4 pitted prunes, chopped
  • 1 teaspoon ground turmeric
  • 1 teaspoon ground cumin
  • 1/2 teaspoon ground ginger
  • 1/2 teaspoon ground cinnamon
  • 1/4 teaspoon ground cayenne pepper
  • 1 tablespoon dried parsley
  • 1 tablespoon dried cilantro
  • 1 (14 ounce) can vegetable broth

Directions

  1. In a slow cooker, toss together the parsnips, turnips, onions, carrots, apricots, and prunes. Season with turmeric, cumin, ginger, cinnamon, cayenne pepper, parsley, and cilantro. Pour in the vegetable broth.
  2. Cover, and cook 9 hours on Low.

Love and peace,

Lisa

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24 hours without a headache!!!

19 Oct

Today was the first day that I have had a full 24 hours without a headache since the end of August. Finally an actual break. I think I have not gone for more than a few hours without a headache. So, hopefully I will continue to be headache free. I hope to be writing here in five days reporting that I am still headache free.

Here’s to that . . . wish me luck 🙂

Love and peace,

Lisa

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When is a headache just a headache . . .

17 Oct

 

A Vekoma Boomerang roller coaster at Wild Adve...

Image via Wikipedia

 

I don’t like to write about these worries, but, a big part of why I even write this blog in the first place is to get things off of my mind. To dump. I realize that many loved ones read this blog and so I worry about causing worry.

But, I need to write sometimes just so I can go on with my day and function.

I have had headaches now – more days than not – since early September. As a result, I will probably have a scan soon (I will already have a chest CT scan soon . . . I could have it as early as this week . . . if I wanted to . . . BUT . . . I do NOT want to . . . so I am going to wait another week before scheduling it. I need a little more time before I enter that world of waiting for results again). Besides, my oncologist may add another scan (because of the headaches). If she does, I will want to do both on the same day. So, I am going to wait to hear what she has to say about my headaches and whether or not it warrants getting an additional scan. Ugh. I hate this part of the cancer roller coaster – wait, that sounds like there are parts of the cancer roller coaster that I like . . . hmmm, not really 🙂

Well, this morning I discovered a new symptom. Etiology unknown. But, thanks to the internet, within seconds I can discover all kinds of horrific reasons for why I have this symptom. I am choosing to go with the least worrisome reason – hemorrhoids – yeah, isn’t this lovely talk for a Sunday morning? Aren’t you glad you clicked on my blog? Sorry. I should put a warning label of some kind preceding posts like this one.

So the symptom is rectal bleeding . . . just a little. I can’t believe I am writing about this. But, if I am to be honest about all of this cancer crap, then I have to write about all aspects of it, not just those that I think people can stomach. There can’t be the parts that we can’t discuss or share because it is not politically/medically correct . . . right? Otherwise, it would be misleading.

Most every cancer patient experiences intestinal problems due to chemotherapy, pain pills, antibiotics etc. All of these medications wreak havoc on your intestinal tract (not to mention, causing other problems elsewhere in your body).

I am presuming that this new symptom is due to either fissures or hemorrhoids . . . and not due to colon cancer. I wish it were Monday already. If it were I would go straight to my doctor and get something done about this. But, instead, I need to wait until tomorrow. And, yes, worry about it. Damn you cancer. Damn you for making any little thing potentially enormous. F you cancer for doing that to me, to everyone who gets this disease and to their loved ones. Sometimes I think it is just best to keep my mouth shut (except for telling my doctors) because quite frankly what is the point in alarming my Mom, for example? But, I can’t exist in this medical vacuum where I shelter everyone in my life from “it” and the possibilities “it” brings.

I also can not dwell on those possibilities. And, for the most part, I do not. But, it is hard when you are sitting alone – battling a ten day headache and trying to just work through it – to not think about those possibilities. It is, after all, so much easier to think you are well when you actually feel well.

Here’s to feeling and being well.

Today I took charge and put myself back on a more stringent diet – like the one I employed during treatment. If nothing else, it makes me feel like I have some say, some control in this nonsense.

Please continue to keep me in your prayers. I thought I would not need those prayers so much by now. But, I realize I am not, at least mentally I am not, out of the woods.

Thank you for your continued love, support, prayers and positive vibes.

Love and peace,

Lisa

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In need of sleep . . .

12 Oct

Today was rough. It was preceded by a rough night . . . I couldn’t sleep and for the first time in some time I thought about, worried about a cancer recurrence. I have had a headache for some time now and that is one of the things that my oncologist wants me to take note of . . . any new headaches, any prolonged headaches etc.

I don’t know why I am having headaches. It could be from stress, diet, lack of sleep . . . who knows. But, it is a bit worrisome. And, when I am alone and can’t sleep the worry creeps in and then sleep is pretty much impossible.

Last night was one of those nights. I didn’t feel well when this morning at all. And, I compounded that feeling by following through on my plan to go to a support group today. That was not a good experience for me today.

Today’s group was somehow very depressing to me. Maybe it was the woman who has had a recurrence of the same kind of cancer that I had. Maybe it was hearing the suggestion that the worst kind of breast cancer to get is HER2 positive breast cancer. I am sure that was not the intended point of the discussion. But, it is what I came away with.

One discussion today was about the different types of breast cancer – triple negative, HER2 positive, “regular” breast cancer . . . etc. I am not sure exactly what is meant by the “regular” kind of breast cancer. But, it is the kind that most women who get breast cancer get . . . so, non-aggressive.

About 70% of breast cancer is not aggressive. As I sat in group today I kept thinking are the survival rates simply reflective of the types of breast cancer? What I mean is that most women survive breast cancer . . . but, most women have a non-aggressive form of breast cancer. So, where does that leave me?

No once can say. My oncologist has told me I am cured. But, she has also said that there is a fifty-fifty chance of recurrence. So then what?

And I know I shouldn’t be thinking that way. But, as I have these aches and pains that I can not adequately explain away, I think about it. I worry about it.

The worry and attitude are always worst when I don’t feel well. I am tired. Very tired of so much pain. I had a great weekend. I went out, spent time with friends and got really tired doing all of that. But, I felt pretty good. Today, however, just wasn’t a good day.

Tomorrow I will see my surgeon. Hopefully it will go well. I am having some new pains that I will bring to his attention. I hope that he will take out the one remaining drain. That would be great and a real relief.

Well, I am super sleepy, hoping to get some sleep soon.

Love and peace,

Lisa

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Re-post of a favorite post . . .

19 Sep

One of the benefits of blogging I did not expect was that it would put distance between me and the cancer. It is still in the room . . . reconstructive surgeries and scans ahead of me . . . make it hard to not think about it.  But, looking back, reading old posts, for me really reminds me of how far I have come and how so many have helped me to where I am today. So, thank you all, my family and my friends . . . for rallying behind me, around me, praying for me, cooking for me, driving me to and from and just being there, here, for me.

Here is the re-post of an old post (originally from February 14, 2010 – one year after my ride began):

Last year, on Friday the 13th no less, I received a phone call, instead of a letter, from my doctor’s office about my last mammogram results. When I had the mammogram, my doctor told me that I would either get a letter in a couple of weeks or, if anything showed up, then they would call me. He conducted a physical exam first, told me he didn’t feel anything abnormal in either of my breasts (and neither did I, by the way) and that most likely I would hear in a couple of weeks by mail – meaning nothing to worry about.

Instead, I got a phone call late in the day on Friday, February 13th. I was feverishly grading exams that had to be returned to my students by our final class to be held that Sunday. So, since I didn’t recognize the number, I let it go to voice mail and kept grading.

I checked my voice mail the next day, it was a vague message (naturally), but, I had a pretty good idea of what it meant. The doctor’s assistant actually gave me her cell phone to call her back. So, the next day, on Valentine’s day, I called her. We played phone tag until she finally reached me back (I was on the phone with my brother Steve at the time, telling him that I didn’t get the letter, that instead I got a phone call and that I was worried and so on and then she called). I spoke with her and she told me that the mammogram showed a mass and that I had to have a biopsy.

As much as I hoped that it would be one of those things that turned out benign, I knew that it wouldn’t. I just felt it, I can’t explain it really. I just knew it.

So, I went back to work, finished grading my exams, taught the last class of the course the next day and then on Monday scheduled my biopsy.  They wanted me to do it as soon as possible and so to speed things up, I was told I could pick up the mammogram films and deliver them to the facility where I would have the biopsy.

I of course did this. I remember walking down a long, cold corridor, looking for the room to pick up my films. I remember signing for them. I remember the woman at the counter sealing up the oversize envelope that contained the pictures of my breasts and telling me I was not supposed to look inside, that the information was for the doctor.

I remember walking back through that cold corridor and feeling the weight of the films growing heavier and heavier in my hand, and, as I left the building and walked through the parking lot to my car . . . heavier and heavier still.

I of course opened up the envelope as soon as I got back to my car. I didn’t look at the films, I didn’t want to touch them, as if in doing so, somehow it might spread. I know that sounds weird, but really, I was terrified to even touch or look at the films. But, I did look at the one white piece of paper and I read the typed letters: ” . . . biopsy ordered to confirm malignancy . . . “

I put the paper back in the envelope, sealed it up and drove it to the facility where I would come back a few days later for a biopsy.

I never shared those words with anyone then. Why should I have? What for? No doctor was going to tell me that it couldn’t be benign. No radiologist, no person, no one was going to take away the hope that I would carry for the next weeks that the biopsy would show that the mass was just a benign cyst. And so I went about my business, albeit in a little bit of a fog, but truly hoping for some miracle. For some OTHER explanation than cancer for why I had been so tired the past many months, nearly a year now – for why I just didn’t seem to rebound the way I used to after a long day or week of work.

I promised myself, whatever the outcome, that next year’s Valentine’s Day would be a better one. And I know it will be. I did not get the news that I wanted last year. But, I have learned a lot about life in the past 12 months. I have learned a lot about myself, about regrets, about not having regrets in the future, and about how to live. I have learned how wonderful and beautiful people can be, how near strangers can become some of your most steadfast supporters and cheerleaders and I have gained so much strength from all of you, my family and friends and . . . I am here.

I watched a movie a couple of days ago called “Crazy, Sexy Cancer” (got it from the library). It was supposed to be an upbeat film/documentary about a woman who was diagnosed with cancer. It was, I enjoyed it. But, here is how it started: “Happy Valentine’s Day, you have cancer.” Apparently that was the day that the woman, whom the documentary was about, found out she had cancer.

My Mom and I were watching it together and I turned to her and said THAT was the day, last year, last Valentine’s Day, when I knew I had cancer. Bizarre. Anyway, it’s been a year now. And, assuming all is going well, I am nearly done with treatment (at least all of the IV type of treatment). There are still some medications to take or at least one to take – but, that is to be worked out still. I will have a bunch of tests in May to see where I am at and will have tests forever I guess (since I plan on being around a very long time).

Well, another ramble during another sleepless night – but the night isn’t quite over yet, so maybe I will go get some sleep now :)

Please continue to keep me in your prayers and send positive thoughts my way, I still very much need it. And, Happy Valentine’s Day.

Much love,

L.

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