Tag Archives: treatment

When Pigs Fly: More Thoughts on Komen . . .

24 Jan

This year I could not have been more grateful for the month of October (aka: Pinktober) to end. Next year, my plan for getting through Pinktober (and SGK’s pink peddling and pushing) is to simply do all of my grocery shopping online and at local farmer’s markets. I want to limit my exposure to the sea of pink. And, I don’t want to be asked again at a grocery store checkout stand if I want to donate to Susan G. Komen “Race for the Cure” [sic] (And by the way, I mean “SIC” as a double entendre).

Just one of the many pink products sold all year long: a Komen Pig Note Pad. But, take a closer look below . . .

When you’ve had breast cancer you have a whole different insight into the world of pink ribbons, pink products, 5ks and three day walks and so on that are all supposed to raise money for a cure and to help women (and men) with breast cancer. I used to think that SGK was using their money to benefit women with breast cancer and to help find a cure. But, I learned quickly, the hard way, that SGK will not be there for you if you need their help. See my earlier post on how SGK abandons breast cancer patients and leaves us in the cold. (I personally called SGK’s advertised phone number that breast cancer patients are invited to call for financial help over 100 times) and not once did I ever reach a live person, not even a voice mail where I could leave a message – in my opinion – what they did – what they did NOT do – while claiming that they would do something – was fraud).

I know many people who love the pink ribbons and love the Susan G. Komen Foundation and their pink rose ceremonies and pink balloons and 5k walks and  – sadly – they think that buying pink will help eliminate breast cancer . . . one day. They think that buying pink will somehow help someone like me.

So why am I talking about this in January now? I was out picking up some office supplies at my local Staples store and did a double take when I saw all of the Christmas displays and seasonal products for the holidays replaced with pink, pink, pink. Seriously? Is it necessary for this to be a 12 month thing now?

I decided to take a stroll throughout the store and take in all of the pink, just curious about whose name is on it and where this pink-breast-cancer-curing-money is really going. Nearly every product I saw at Staples that was pinked was done so in the name of the Susan G. Komen Foundation. Not much of a surprise really.

Maybe when pigs fly we'll have a cure . . . until then, by all means, let's keep "benefitting" SGK!

But, here is what really surprised me . . . they don’t even claim any more to be giving the money to “the cure”. Instead this is what the Susan G. Komen pinked products I found now say: “benefitting” The Susan G. Komen Foundation . . . at least they are being honest about it now . . . where the money from your purchase goes . . . “to benefit The Susan G. Komen Foudation”.

It certainly did not go to benefit me or anyone I know who has had, survived or died of breast cancer. I love this complete lack of accountability (not). I guess it is just par for the course. The sad thing is that people buy this stuff thinking, believing that it will actually lead to a cure . . . yeah, maybe when pigs fly . . .

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Thank you for visiting cancerland. We hope you enjoyed your stay.

18 Nov
Cover of "One Fish, Two Fish (Dr.Seuss Cl...

One Breast, Two Breast, Red Breast, New Breast . . .

I haven’t written in a while. I keep starting a blog post, even get quite a distance into it, but, then I stop, save it as a draft and put my laptop away. When I return to it the next day I am no longer “there” anymore and so I start over, writing about something else. I have nearly posted something on a number of topics in the past couple of weeks. But, I just can’t seem to put myself behind it long enough to get it done.

Lately, I either write because I feel particularly down, displaced by this cancer nonsense, and use writing as a vehicle to somehow transport me back to a better spot or I write because I want to share something really good.

I think the past several weeks I have had so many highs and lows and have so quickly felt tossed back and forth from one extreme to another that I can’t wrap my head around either place long enough to write about it. Friends are calling and emailing to see how I am doing: “You haven’t written in a while . . . are you okay?” etc.

I am tired. I am overwhelmed. I am happy. I am sad. I am grateful. I am angry. I am joyful. I am mad.

I am quick. I am strong. I am slow. I am weak. I am exhausted. I am invigorated. I am bereft. I NEED sleep.

Maybe I can turn the above into a Dr. Seuss book for cancer patients.

In a tree. In a boat. On a train . . .

I know . . . I could call it: One Breast, Two Breast, Red Breast, New Breast (you know, the Dr. Seuss book: One Fish, Two Fish, Red Fish Blue Fish). That would have to be the breast cancer-mastectomy-radiation-reconstruction version of the book. Or I could do a new version of “Oh the places you”ll go” . . . and call it: “Oh The Places You Will Never Want to Go”?

I am fierce . . . the hot-pink-now-faded t-shirt I wore to nearly every infusion for over a year.

I am 20 months into this cancer roller coaster and still I am not off the ride. It isn’t like there is a graduation day. No Pomp and Circumstance marks the end of my war. I don’t get a diploma that says “cured”. There isn’t a sign that says “Now Departing Cancerland”.

Instead, there are the daily reminders of both what I have been through and what I look forward to, what I have lost and what I have gained. Every time I get dressed and look to see if a scar shows through or whether a top still fits or does it need to be tossed. And, the difficulty even getting some clothes on and off because my arms don’t go all the way up over my head anymore (the radiated side is not cooperating at all – one of the things they don’t tell you is that when you go through radiation your pectoral muscle can shrink which can leave you with a frozen shoulder . . . back to physical therapy at $100 a week . . . )

I marvel at how far I have come, but, I am sobered by how far I still have to go. It is a very strange and surreal journey. And it is not over. I guess that is the most difficult part right now – navigating through this time – from cancerland to the rest of my life. I feel pain on a daily basis, but, it is better to keep moving than to lay in bed. I definitely feel like I have my wits about me again . . . chemo-brain be damned (my brain really does seem to function again . . . the way it used to . . . what a huge relief). And, I have been able to work out a few times at the level I would have before all of this began (I put in a pretty intense hour and a half at the gym just a few days ago). I AM making my way there . . . where ever there is . . .

I just wish there was a map.

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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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1/3 OF THE WAY DONE WITH RADIATION . . .

20 Nov

That’s it, that is all I wanted to say. That, and thank you to everyone who is, and has been, praying for me. I greatly appreciate it.

Okay, I guess there is still a little more to say:

Today was the completion of two weeks of radiation. Friday’s are the hardest as it has been five days in a row of mega doses of radiation each day. My skin looks sunburned is all, but feels quite tight. Mostly I am just tired. I slept most of the day today. My doctors tell me that weekends are intended as a time for rest to recuperate from the week of treatment. By Sunday (if last weekend was what is to be typical) I should feel at my best and ready for the next week of treatments to begin. BUT, I am so thankful for Thanksgiving because it means that I will have only three treatment days next week (Monday through Wednesday). I will then have Thursday through Sunday off. As I said earlier on my blog, I had the option of coming in on Friday (as the Cancer Center is open). But, I decided to take them up on their offer of having Friday off.

I am told it will not change the effectiveness of my treatment – it will simply extend my treatment by one day. So, instead of my treatment ending on December 18th, it will end on December 19th. All I know is that it will be over before Christmas and that is truly a blessing.

So far my physical symptoms (other than exhaustion) have not been too bad. I am practicing meditation and relaxation techniques and this has been extremely useful.

My blood pressure prior to my cancer diagnosis was about 104 over 55, sometimes lower. So I did not have high blood pressure. But, having now been in treatment for nearly 8 months – a great deal of that time my blood pressure was much higher (sometimes still in what is considered a healthy normal range, but many other times, way too high).

Well, ever since I incorporated the relaxation and meditation, I have seen my blood pressure return to normal. That has to be a good thing. I know it is not a cure for cancer, but it means that at least my heart is under less pressure and that has to be a good thing. Still, it takes a lot of effort to keep it up and to actively avoid stress. It is working though and so I just have to keep it up.

I will be going to bed soon, as rest is key.

Thank you for your continued prayers and positive thoughts – please keep them coming my way.

Much love,

L.

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Radiation Starts Monday . . . most likely . . .

6 Nov

So today I go into Hoag for a “radiation simulation” – sort of a practice run I guess. Actually, it is pretty high tech (for which I am glad). Wednesday I went in for a CT Scan so that the doctor could make marks for where beams of radiation should go so as to miss as much of my lung as possible while at the same time radiate the areas needed. This is what the CT scan was for – to create a map of my chest so that the radiation will radiate my remaining breast tissue, the chest wall and lymph nodes above my breast (all of this is on the right side where I HAD cancer). There is no indication that the lymph nodes to be radiated have cancer. However, studies show that radiation after mastectomy reduces the rate of recurrence of breast cancer in the same breast (recurrence of cancer is most often in the same breast that had cancer originally).

I will also get tattooed today. So two things I never would have done in my life time: get breast implants or a tattoo. 🙂 The tattoos will be freckle like in size – so these will hardly qualify as a real tattoo. Still, that is what they told me – that they were going to tattoo me today. The tattoos will be used to line up beams and things like that so that the treatment is to the right area each time. who knows, maybe it will be in the pattern of some part of a constellation like ursa major or minor – maybe the big dipper or little dipper. I will have to use my imagination to come up with some kind of connect the dots. Maybe this isn’t funny at all. But, I don’t know how else to look at it today.

I know I am not going to enjoy the experience and I know it will be uncomfortable. But, it is the coming weeks that cause me the most anxiety – going in everyday with the intent to burn the skin so as to kill any possible microscopic cancer cells lurking about waiting to grow into something again. I know it is the right thing to do, but, I am not looking forward to the pain and discomfort that lies ahead. Still, I am choosing to expect the best, the least amount of pain and the least amount of fatigue from this treatment.

Another aspect of today will be to see if the mold they made for my right arm to make a thing for my right arm to go into , works. It will serve two purposes: 1) to keep my arm in the same position each time I have treatment and 2) to protect my arm from being radiated.

So today we will check these things all out and assuming everything fits and matches up, then my first radiation treatment will be this Monday.

Wednesday I saw one of my surgeons and she removed the pick line out of my arm. It is soooooo nice to go to bed and not be constantly wakened by snagging it into blankets or just bumping it into my side. It was quite annoying. it was not the end of the world, but still, I am very relieved that I do not have to deal with it now.

Well, wish me luck today.

Thank you for your continued prayers and positive thoughts coming my way.

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Hoping for Blue Skies Ahead

5 Nov

Last night was a rough night. I woke up at 2:00 am in a lot of pain and there seems to be very little that can be done about it. The pain is less severe right now. But, it still is preventing me from doing a lot. And, this, my one day this week that I do not have the interruption of a doctor’s appointment. Tomorrow I have two appointments.

Anyway, enough on that. I am trying to get back to work. Oddly enough, I worked full time during chemo (the time I was told would be the worst and most difficult of this whole process). Instead, it has been post surgery that has been most difficult. I guess my immune system being shot down by the chemo prior to surgery didn’t help matters. So, hopefully I am on the mend.

I have a radiation “simulation” appointment tomorrow – where they calibrate the machine with measurements taken earlier this week via a CT scan of the area to be radiated. Then I am supposed to start radiation on Monday.

Please say prayers for me on all of that.

I miss everyone and hope to see you all soon.

Lisa

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home from hospital

8 Sep

Hi all,

I ended up having to go to the emergency room this past Saturday, had a temp of 102.8, which is dangerous for me. I was admitted to the sub icu floor (something between a regular hospital situation and the intensive care unit, they are able to keep a closer watch on you I guess). My blood pressure ranged from 79 over 35 to 190 over 90 . . . crazy. Anyway, they ran a bunch of tests (THAT was fun) and are still waiting back on blood cultures to see what kind of infection I had or if maybe I had a virus. My fever went down in the hospital and they kept me around for a couple of days to watch my blood pressure and to see if they could figure out the source of the infection. So far we don’t know. But. there are still cultures that we are waiting on (some take just 24 to 48 hours and some take up to 5 days). If the cultures are all negative, then the presumption is that I had a virus. Anyway, I am on antibiotics either way.

My immune system is pretty taxed after the chemo, so I am prone to getting pretty much any cold or flu or whatever, but because I have a weakened immune system it’s tough for me to fight it off.

Anyway, I am home . . . so grateful for that!

I have three doctors appointments this week (it is like a full time job this cancer thing). But, today at least I don’t have any, so I can rest. I have one on Thursday am and one on Thursday afternoon and then on Friday. I am very much looking forward to the appointment on Friday because it is with the specialist up at UCLA. She is great – please pray for me that she has some good news for me, because I could really use that right now.

Marv – words can not express how much I appreciate your taking care of my pup Molly. I know it can’t be easy. But, your caring for her has made it so much easier for me. Thank you so much!

okay, I am going back to bed, please feel free to send me a message here, or to email me. I miss everyone so much. This dang cancer thing can be so isolating.

Please continue keeping me in your prayers.

Love,Lisa

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Gathering up some energy . . .

1 Sep

So, I decided not to take a pain pill this afternoon . . . we shall see how that goes. But, I really am tired of being tired and I think that the pain medication is probably contributing to my sleepiness. I can’t imagine getting addicted to this stuff. I realize that people do, but, I just don’t get it. It’s not like you feel good taking it. You just feel out of it and, the pain does seem to go away for a while. But, it’s not like you take the drug and you are flying high and can’t wait to take another. Maybe that’s not what it is about for people who do get addicted to pain medication anyway. I wouldn’t know. All I know is that the sooner I can be off of this stuff and resume my normal life the better.

I can’t drive until I stop taking it (not a car, not a bike). And, I’ll bet I can’t even operate heavy machinery while I am on it . . . do you see the the limitations I am experiencing?

My main problem with it is the sleepiness – assuming that is what the sleepiness is in fact from. I have actually fallen asleep while talking on the phone (makes me a little concerned about calling back prospective clients).

A professor from UC Irvine’s new law school called the other day expressing some interest in one of my books. This is pretty exciting as I really want to get into UCI and had planned on marketing to them this past Spring for their Fall starting semester. But, cancer kind of got in the way with that. Anyway, I guess this professor saw our books at a local law bookstore (the only one in Orange County) and she wants to make the Torts book (that is the subject she teaches) available to her students. So, that is encouraging. We sell our books at UC Hastings, but, it would be great to get into a local law school bookstore as that would translate to more bar students locally.

Anyway, I have been afraid to cal her back for fear I will fall asleep mid sentence. I will call back soon, I just have to make certain that I am awake enough first.

Let’s see, no real other updates. Just impatiently waiting to be recovered from surgery. I am very bored (probably a good sign as last week I was in too much pain to be bored).

I can’t wait to see the specialist up at UCLA so I can find out more about how I really am doing. I think well. But, Dr. Hurvitz is the oncologist I really trust (she is the one up at UCLA). Plus, I just trust UCLA in general. They developed Herceptin and have treated far more women with my type of cancer I think than anywhere else. So, I feel much more confident in their abilities and knowledge.

My main complaint right now is the heat. I wish it would cool way down. It is pretty tough for me to be outside except in the early am or after dark. So please say some prayers for me and for the weather to cool down a bit 🙂

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I know, I know, not supposed to be typing . . . bad patient!

30 Aug

But, I just had to let you all know that I am feeling a lot better tonight (probably because I wasn’t typing 🙂 or over doing it in general). I rested a lot and a dear friend looked after me all day. Finally, my parents get a break, they have been here every day, my Mom has stayed with me every night. So, now she gets a break and so does my Dad. I am so grateful for their love, support and for being so smart! I am so lucky to have them as parents.

I had the energy to go out to dinner with some friends for a girl friends birthday. I put on a dress, make up, the whole deal. It was great to be out for a little bit.

Now I am going to bed and plan to spend most of tomorrow in bed as well (it proved to be the best route for today).

Please keep me in your prayers.

Love to you all,

Lisa

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Sorry been too groggy to be bloggy . . .

29 Aug

This past week has been a series of doctors appointments, pretty much one every day this past week. Also, had my Herceptin treatment (finally) this past Monday. It was my first three week dose (prior to now I have gone weekly for Herceptin, but now I only have to go every three weeks for a triple dose). The Herceptin treatment made me sick (they ran it over one hour, it is supposed to, at least UCLA does it this way, be run over 1 1/2 hours). I have always had to have my weekly treatments ran over an hour instead of 30 minutes (the usual infusion time for a weekly dose). Otherwise, I have reactions and get sick after wards. So I figured that when I went to the “once every three weeks dose” that is usually done in 90 minutes, that mine would be done in the normal Lisa double time. But, my nurse (not the one that I adore, who understands my sensitivities to infusions and how I react) said no. I asked her to explain it to my doctor and she did and he also said no. They said I could have a one week infusion over one hour or a three week infusion over one hour.

What is their problem? So, I was forced to choose between getting the amount of Herceptin that I knew that I needed but also get sick or take a smaller dose and leave without getting sick. I decided to get the triple dose (knowing I would have some reactions) because I have already been off of this critical drug for nearly a month now and I just did not want to risk taking the smaller dose after such a long absence from this drug.

So, I felt pain during the infusion (totally unnecessary if it were run over a longer period of time) and then came home with a fever and flu like symptoms which lasted a few days. Trust me, coughing after you’ve had a mastectomy is very unpleasant.

I spoke with my favorite nurse about the shortened time for the infusion (she was out on Monday, so could not intervene) and she said that she would straighten it out for next time. She feels that it should be administered over about 2 1/2 to 3 hours with a watchful eye and slowed down if I experience pain. I just can’t afford to go in for treatment when she isn’t working that day.

Let’s see, what else. Oh yes, saw my reconstruction surgeon – she waited on expanding me (I am glad for this, less pain to deal with this week). She also does not want me typing right now – so this will be my last post perhaps for a week or more – bummer.

Saw my oncologist (not the specialist that I love) –  nope, the goober that I detest. He was less unpleasant after I kind of lawyered up on him last week. He is now too afraid to say anything negative (which by the way, was NEVER my point. I want the truth, whatever that is. But. he can’t keep anything straight during our meetings and his “advice” once nearly killed me – sent me into anaphylactic shock – I have now since found out that the PA who advised me incorrectly on premedications for one of my chemo rounds was working under him and following his advice – NEITHER of them – the doctor or his PA – consulted my chart because if they had they would have seen my prior allergic reactions and would have instructed me to take more of the medication not less, or as in their case, telling me to take none). Anyway, need to stop dwelling in the past.

I hope to see the specialist up at UCLA very soon to go over my pathology report. I am told right now that I have about a 20% chance of having a recurrence within the first year. This is what my oncologist said. Have no idea what that means, the first year after treatment is completed or the first year after surgery or what? I don’t bother following up on many questions with him now because he nearly always conflicts himself and I am left worse off, more confused than ever and pretty depressed. So this time, I went the, “not going to allow the butthead to depress me” route and left it at that. Besides, my specialist up at UCLA is the one I trust and so I will hopefully feel better after seeing her again. Until then, I will hang on to my having an 80% chance of NOT having a recurrence within a year (whatever that means). I mean, what does it mean for the year after surgery, or the year after I have completed treatment or what? I don’t know and maybe really know can tell me these things. But, I sure won’t waste my time asking Dr. Bonehead any of these concerns for his answers will not shed much light on anything or be something I would trust or rely on.

Let’s see what else, oh, I am anemic now, can really feel it too. Very slow moving. I was very anemic after surgery (probably from a combination of blood loss and chemotherapy), but have improved significantly since then and I am sure I will get back to my non-anemic self soon. Until then, the sloth makes her way up or down stairs out of necessity only (damn stairs)! In the hospital they wanted to do a transfusion, but I had not signed a consent for that (I am such a brat aren’t I?) Anyway, I told them I would not consent until my surgeon came by to see me and low and behold, yeah, my surgeon agreed we should wait on the transfusion. Phew!

Okay, it is pretty much too painful to continue now. I have stop typing.

I am doing okay, still recovering, still need lots of help doing just basic things and would love to hear from you (phone calls are great and so are emails or messages here or on face book messages). Just remember I can not type back at least not for a while.

Keep praying for me and for my family. Love to you all.

Lisa

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