Tag Archives: night sweats

All Quiet On The Western Front . . .

31 Jan

Haven’t had much to say lately. There have been a lot of reasons for that . . . being busy with work, being in pain (which I think is probably . . . and hopefully . . . because of an increase in work hours and just simply the fact that I am doing more and more).

Tomorrow I have a breast MRI . . . a bit odd, since I no longer have breasts. But, I do still have some breast tissue (after having reconstructive surgery) and since I have had pains in my chest my oncologist wants me to have the MRI. I have some other tests, that I am not so worried about. So tomorrow will be a medical day (used to have so many of those). I hope that tomorrow’s results will be good.

This is a picture from one of the last road trips I took before the cancer roller coaster began. It is time for a weekend get away . . . soon.

I will be going to the hospital where I had my first breast MRI almost three years ago now. It was the day that I found out that the cancer in my right breast had unfortunately spread to my lymph nodes and was invasive. It was a tough day. It was the kind of day that so many women (and men) have experienced and continue to experience.

My Aunt Ann died of breast cancer in 1994. And, to this day, there is still no cure and very little change in the survival rates. Some make it, some don’t. Some get it some don’t. Some get it a second and third time, some don’t. Not a lot has changed. And anyone who has read my blog, knows all about how I feel about Susan G. Komen’s “Race” (sic) “for the cure” (sic).

Still, Herceptin became available since my Aunt’s passing. I am lucky. I am still here because of the availability of that drug.

And when I think back to almost three years ago, going in for my first breast MRI (back when I had breasts, breasts that were apparently trying to kill me) I already knew that I had breast cancer. I already knew that I had “the bad kind”. I already knew that despite the fact that I felt no lump, and that my doctor’s felt no lump, the cancer consumed most of my right breast. How could that be?

I had dense breast tissue. And, I had a fast growing, aggressive form of breast cancer. On the initial mammogram that detected it, it was like a spider web like appearance, something that was ultimately called “multi-focal” breast cancer (meaning multiple locations and diffuse). From my understanding of it, that is part of why I did not feel anything and why my doctors did not feel anything abnormal.

That is something that still floors me . . . that I never felt a lump, that my doctor’s never felt a lump.

Women need to know whether they have what is called “dense breast tissue”. We need to know this because it a) increases a women’s risk of getting breast cancer and b) it makes detection harder . . . which can mean a later diagnosis.

I also want women to know that there are other signs of breast cancer than simply feeling a lump. I had breast cancer for some time before it was detected. We know this because, looking back, there were symptoms.

What I did feel was exhaustion. I was tired. My body was, after all waging a war, fighting. I also had night sweats. And when I say night sweats, I mean waking up completely soaked, drenched kind of night sweats.

I brought these concerns to my primary care physician and he told me that I was probably going into early menopause. I didn’t really trust this, in my gut, I thought it had to be something else. Still, not in my wildest dreams did I think it was breast cancer. But, about six months later, in a mammogram, I found out the real reason why I was so tired and having night sweats.

I say this here because I want everyone to know what my primary care physician did not know: that night sweats and exhaustion can be signs of breast cancer. My doctor dismissed these symptoms as being attributable to “hormonal changes”. I had Estrogen and Progesterone responsive breast cancer. So there definitely was something hormonal going on. But, my doctor never looked into any other possibility. My oncologist tells me that these were very common signs of estrogen responsive breast cancer.

We trust our doctors, or at least we want to. I knew in my gut that my doctor’s explanation of my night sweats and being tired was wrong. In fact, he told me to take supplements that would have actually increased the estrogen in my body (thinking that my symptoms were from a drop in estrogen). I would imagine a simple blood test could detect hormone levels . . . at least I would think. But, none of that was done. I didn’t take those supplements (fortunately – because increasing estrogen levels would only have fed the cancer I already had at that time). But, I also did not trust my gut enough to seek out another doctor. And I didn’t know I had dense breast tissue, and I didn’t know that night sweats could be a sign of breast cancer. And, unfortunately, my doctor did not know either. (By the way, I have a new primary care physician).

I have spoken to so many women lately who have either put off having a mammogram (have never had one yet and they are years past 40) or that they just haven’t had one in a few years. And, in further talking with these women, not a single one knew whether they had dense breast tissue.

There is legislation being contemplated to make it a requirement that patients are informed as to whether they have dense breast tissue. This would go a long way to better detection, earlier detection and hopefully prevention (if a person knew that they had dense breast tissue, then perhaps extra precautions could be taken to help prevent breast cancer. And, it would be a basis for patients getting better imaging – a breast MRI, for example, rather than relying on a mammogram that may not detect cancer in a patient with dense breast tissue until it has spread farther, become bigger, become more visible).

So, get a mammogram and when you do, ask the radiologist whether you have dense breast tissue or not. And be aware of your body, trust your instincts and if you think your doctor’s explanation of something is not right, then go see another doctor.

Well, it is now already tomorrow (this post has taken me into the next day). So I am hours from spending a chunk of my day back where all of this started. Hopefully all news will be good.

I appreciate your prayers and/or positive thoughts coming my way.

Love and peace,

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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As I expected . . . being my own doctor

31 Jul

As expected, my meeting with my oncologist was pretty much useless. Ten minutes into our meeting (after I had asked him about how soon I would resume the Herceptin after surgery (this is the wonder drug for HER2 + breast cancer) he said, “You’re HER2 – right?”

Holy crap! Okay, here’s the deal. I ONLY would be on Herceptin if I was HER2+. So, it doesn’t take a rocket scientist (or an oncologist) to figure this out. Unbelievable.

I swear, he makes it up as he goes along. Seriously. This is just basic information that anyone could get with a simple search online. Or, by watching a movie about the making of the drug.

So, not only did he not read my file before our meeting, he doesn’t even pay attention to what I am saying or even what he is saying during our meeting. It is like meeting with a teenager who has ADD (except that he can sit still). I am done being incensed about it or enraged. There is no room for those feelings a week before surgery. Instead, I have to do my own homework and find out what the heck it is that I should be doing.

These were the two main questions that I had for him – to which I have no answers – or at least no answers that I can trust:

1. How will the fact that I wake up in the middle of the night each night drenched in sweat affect the healing of the surgical incisions? (Ever since the chemo I started having night sweats. I wake up completely drenched, my clothes and bedding are soaking wet. It seems to dissipate slightly between each chemo. So, my hope is that it will stop soon – since I am not having any more chemo. But, right now, it is still happening). His answer: it won’t. My feeling?  That doesn’t make sense. It clearly can not be good if you are dripping wet every night and you have stitches. I don’t know, but, it just does not seem to make a lot of sense that being sopping wet every night is going to be good for my incisions to heal. Finally he just said that I needed to ask my surgeon all pre-surgical questions. Punt.

2. How soon will I resume the Herceptin treatments? (My normal  schedule would be to have it the Thursday after my surgery). His first answer was: “Hmm, well . . . I guess you could resume a week after surgery if you feel up to it”.  My feeling is I don’t want to skip a week of this drug – we know it kills microscopic cancer cells and since I am no longer getting chemo, I don’t want to be off of this drug until I am cancer free. And, my feeling is that I don’t want my oncologist to be guessing. Then he changed his answer and said that I needed to wait a month after surgery to resume the Herceptin. Then it was that he would see me in a month after surgery and we would talk about it.

I have no idea what he is basing his decision upon (or should I say indecision on). It does not give ma a lot of confidence when he changes his decision like that from one minute to the next. Especially when he didn’t consult with anyone to change his decision from one week to four. It is like he just kind of makes it up as he goes.

I was scheduled to have Herceptin next – after yesterday’s treatment – for next Thursday, August 6th (the day before my surgery). But, he decided that I should not have it the day before surgery. So now, if I follow his “plan”, I will be off of Herceptin for at least five weeks. I am not so happy about that.

So, now I have to get in touch with Dr. Hurvitz (hopefully I can reach her today) to find out what should be done Herceptin wise. It is my understanding that you do not want to be off of the drug for any significant period of time (until you have completed treatment of course, and then you no longer take Herceptin). After the chemotherapy, Herceptin treatments go from every week to once every three weeks (patients are given a triple does every three weeks). This is what the studies show is effective. And, it nice to not have to go in every week and get stuck in the arm.

I am guessing that I was probably supposed to start the every-three-week-triple-dose prior to surgery. Instead, he just wants me off of it for what will be a period of five weeks. I am not happy about that. They could have given me the triple dose yesterday. This way, I could wait three weeks for the next one. But, perhaps when I reach Dr. Hurvitz she will say that it is normal to be off of Herceptin during your recovery from surgery. But, I don’t know. And, since my oncologist clearly doesn’t know AND since he clearly doesn’t think he should place a call to someone who does know (this is obvious from his working it out during our meeting – it is like he is thinking out loud and exposing his ignorance all at the same time – he doesn’t base his decisions upon anything as far as I can tell).

I had other questions for him, but these were less critical and not really worth repeating here. I did ask him about whether I should get a port for the remaining Herceptin treatments (it is now clear that the topic of additional chemo is off the table – since if I were slated for more chemo a port would be required because I don’t have anymore chemo veins in my left arm. Taxotere is very hard on your veins so they do not want to keep putting it into the same vein – especially the smaller veins in your arm. This is why they opt for a port. But, since I was doing neo-adjuvant chemotherapy (chemo before surgery) I did not have a port. It was difficult, but we did it (my nurse and I) and so now the port is optional because Herceptin does not pose the issues that chemo drugs pose for veins). So I guess last week when I told the nurse that there was not a single clinical trial that had ever been done on HER2+ breast cancer where more than six rounds of chemo had been administered made its way back to my oncologist. I guess . . . or maybe he just forgot that he told me I was likely going to have additional chemo.

Oh, and the other change in his attitude was this: -last meeting he told me that there was no way that I could have a complete response to the chemo prior to surgery – meaning that there was no way that the chemo could have killed all of the cancer. But, when I told him that my surgeon could not feel a lump in my right breast during the physical exam she did last week (in fact, she said she could not tell the difference between my right breast – the one with cancer – and my left breast – which we believe does not have cancer) He told me, “Well hopefully we won’t find any cancer left when you get to surgery”.

I give up. Maybe he is bipolar. Yeah, Dr. Lisa has completed her diagnosis . . . he is bipolar.

It is a good thing that my surgeon could not detect any lump last week. But, I do have dense breast tissue and so that does make it harder to detect lumps – part of the reason I am in this situation in the first place – but that is another blog post.

Okay, well, enough of my frustrating meeting. I have work to do. I will get a hold of Dr. Hurvitz (hopefully right away) and find out what it is that I need to do.

I wish I could switch to her now. But, I can’t because I want to complete my surgery at Hoag with the surgeons I have already screened. Especially my reconstructions surgeon who is one of only a few that is trained in the latest types of reconstruction techniques.

Well, wish me luck with my homework!

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My Fortune Cookie: "Knowledge is Power"

27 May

That’s what my fortune cookie said today – “knowledge is power”. Not bad.

I went to a support group for women with breast cancer today. It was very helpful. I learned a lot about the different options, met women who have been through what I am going to have to go through and was even able to see the results of two different types of breast reconstruction. There is so much to know. But, I am getting through it and I do kind of believe in my fortune cookie . . . I just wish the lotto numbers on the back would work.

I am tired, but I am not getting much sleep. Today I called my doctor to ask about that – they can always give me yet another drug to take to help with that. But, I prefer to put as little as I can into my system. It’s just one more thing my liver has to process. Still, sleep would be nice.

The reason I don’t sleep is because I get incredibly hot at night. It is so uncomfortable. I can have my air conditioning blasting cold air and yet, my skin is so hot. It is really quite annoying.

But, when I spoke with the physician’s assistant today, she said it is pretty normal. And, MJ, my guardian angel, mentor, counselor extraordinaire (she has gone through breast cancer and has been helping me through mine) told me that it is definitely part of the package (the chemo package). And, I guess it is temporary, hopefully.

Somehow knowing that it is just part of the deal makes it easier . . . of course I have tonight yet to get through and I am warming up as I write. It is such a strange sensation really. It lasts for hours and hours and just doesn’t really go away until the light of day. While I do sometimes get warm during the day, it just isn’t the same as the night time.

Well, it is nearly nine pm, so I am going to take this hot bod out for a walk and try to cool off.

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