Tags: breast cancer, cancer, chemo, chemo brain, chemobrain, chemotherapy, loss, memory loss, poetry, survivorship
Tag Archives: chemo
Birthdays . . .
30 NovYesterday 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.
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
Hoping for Blue Skies Ahead
5 NovLast 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
back on pain meds
3 SepWell, I don’t know if it was skipping the pain meds for the day on Tuesday (which my surgeon approved me to do) or what, but, I was in so much pain on ‘Tuesday night I thought that I would not make it through it. Thank God for my dear friend who came to the rescue and got me back on my pain meds and kept me on them throughout the night and day (waking me up at 2 am to take a pill etc.)
Once there is that much pain I really can not think straight or take care of myself. I don’t know. I was told that the surgery and recovery from surgery would be so much easier than chemo. But, that has not been my experience. I presume it has something to do with the weakened state you are in post chemo and that having surgry right after chemo makes it a bit slower recovery time. But, all I know is that I thought I would be a lot further along by now. It’s a struggle right now to stay awake to write this post and you can be sure that I will be going rt back to bed as soon as I am done.
I have an appointment with my reconstruction surgeon today (I see her every week right now). She plans on “expanding” me today (please see prior posts for what this is, I am way too tired to explain it right now). Basically she will be adding saline to the expanders that were put in under my pectoral muscles during surgery. After she has expanded me to a size that I like then she will be able to exchange the expanders for silicon implants. It is a process. But, the very exciting part about it is that I will have a chest (even already have one, but just not a whole lot until she does more expansion – the first of which is today). It is so amazing really. There is – so far no detectable scarring the way everything is healing. Unbelievable.
But, all of that stuff above is really kind of not important to me. I mean, sure on some level it is, of course – to be able to come out of this with natural looking and actually beautiful breasts (so my reconstruction surgeon brags to me every time I see her . . . ” You have great skin, I am so excited to be doing your reconstruction”. Yeah, raw, boo . . . it’s all great, but I am just soooo tired and really all I care about is surviving. You know what I would like to have one of my doctors bragging to me about – is how I am going to survive this no problem – – how when all of this surgery crap is over with and treatment, that I am going to be 100% fine. That is what I want an oncologist to brag to me about! I have to say that the pain has definitely affected my overall mood – – the pain has been depressing me quite a bit. So hopefully the pain will get under control pretty soon so I can start getting back into things a bit more.
Well, I am going to take a nap and gear up for my appointment with my surgeon – hopefully she will still think that everything looks good and hopefully the expansion won’t hurt too much.
Oh wait a minute, I left out the most important thing! I have an appointment with Dr. Hurvitz, the breast cancer surgical oncologist specialist up at UCLA on September 11. I am a bit nervous, but I am mostly thrilled to be able to see her as she is so good.
Okay, nap time.
Please continue to keep me in your prayers.
Love,
Lisa
Another day of arguing with my oncologist
21 AugThis time I “won”. I will be getting Herceptin on Monday. Still, I have missed over three weeks of Herceptin treatments simply because I have a jerk of an oncologist. you can read more about my earlier trials with this man from prior postings. My hands still hurt quite a bit and I am basically hunting and pecking rt now, so this will be somewhat brief. I don’t have the energy to get into just how I convinced my oncologist to let me have the life saving drug Herceptin this Monday (rather than continue to wait weeks longer for it). But, let’s just say that I decided to no longer even attempt to be pleasant or appear deferential to his “expertise”. Instead, I told his PA that if he didn’t call me back today that I would be leaving and that he would never hear the end of me, that I would tell my story every where I had an opportunity to do so and that my first audience would be every board member for the the Women’s Breast Care Center and Women’s Pavillion at Hoag and that I would be sending it via certified mail tomorrow along with emailed copies.
He called me back for the very first time ever. I told him I had nearly lost one month out of the 12 months of Herceptin treatments that are standard protocol for treating my cancer. I asked him why he did not agree with the rest of the world (UCLA in particular). He says now that he does agree with them, but he was just being “cautious”.
Again, he “went over my case with me” and in doing so was completely wrong – wrong on the pathology report, wrong on how much chemotherapy I had been through and even wrong on one of the chemo drugs I had been given. This is what I have to deal with on a day when I should have been in bed all day. I have never been so physically exhausted.
Anyway. some progress has been made. I still do not have any confidence in my oncologist and I still MUST find a new one. But, I want to keep my surgeons, especially my reconstruction surgeon. Amazing. I can not believe how well the surgery went. The reconstruction surgeon came in after my first surgeon (also excellent) performed the mastectomy. So as soon as one side was completed (mastectomy-wise) my reconstruction surgeon came in and worked on one side and then moved to the next. The total procedure (with both surgeons) was 6 1/2 hours.
Well today, I got to see the incision and it was incredible, I am absolutely amazed at what they did. I knew they were good and I knew that my reconstruction surgeon was one of the best in the country, but still, I am amazed. And, she isn’t even done yet (there are a few steps I need to go through). My reconstruction surgeon was very pleased with the healing so far and believes there will be no scarring. In any case, it is truly amazing. The advances made in just the past few years are truly remarkable. So, on that end, I feel very blessed.
Just have to find a new oncologist.
There is a possibility that I will be allowed to switch for just the oncology portion of my care to UCLA and stay for the reconstruction part of my care (and surgical follow ups) with Hoag. I have to file a grievance and go through a formal process through which hopefully will result in my insurance company agreeing that I can split up my care in this fashion. I hope so. Please say some prayers for me on this, I really, really hope it will work out.
Well, I am pretty spent right now. I am doing better, but today was a bit of set back physically and emotionally and pain wise simply because I had to deal with my oncologist. But, I am now going to bed. My Mom is here staying the night with me – which I so appreciate. So, I should get a decent amount of sleep tonight.
Love to you all and please continue to keep me and my family in your prayers.
Surgery in three days . . .
4 AugYesterday I had pre-op testing at Hoag and will be going back today for more (I am having a treadmill stress test to see how my heart is doing). Yesterday’s EKG was normal so hopefully today’s test will be normal as well.
I will be going to a support group as well. It has been helpful in the past. Today, however, I am bringing my Mom with me (or rather she is meeting me there – as I have the treadmill test before the support group meeting). I may have to be a bit late, depending upon when I get out of my test.
I hope it will be helpful to my Mom to go to the group today. There are women of all ages there (some going through treatment and some who have recovered and have made their way through cancer and some who have had recurrences). Hopefully it will be a positive experience for my Mom and for me as well. This whole experience has certainly taken its toll on my parents. That is probably the worst thing about this diagnosis for me . . . to see them have to suffer because of me.
I feel like each day is filled up with so much stuff and then the day passes and I have one less day to take care of things that I need to take care of before surgery. My dog needs a bath, my house needs to be cleaned, I still have to arrange care takers, I need to speak with my surgeons again (in particular about my release date from the hospital), I need to shop for food, I need to pay bills in advance so that I do not have to take care of that again until after I have recovered, I need to rest, I need to write thank you cards, I need to speak with someone at Hoag about my diet while I am in the hospital (I am on a pretty restricted diet – mostly self imposed – but encouraged by my primary care physician who is an MD who practices integrative medicine and to whom I give great credit for my pretty much normal blood counts – in spite of going through chemotherapy these past two and a half months), I need to pick up prescriptions, finish up paper work for hospital admission, get ready for not working for several weeks, if not a month or more (this means finishing up online course materials for my classes so that my assistant can enroll students in my absence and get them started on self study until I am back to work) and who knows what all else I need to do – this chemo brain is less and less reliable these days.
Oh, I know another thing I need to/want to do and that is to find something to work on, read or listen too that might help my brain function. Chemo brain is a real thing and can last for some time. Studies have shown that exercises and learning new things (like studying a foreign language) can help rework those synapsis that are messed up with by the chemo.
I have trouble finding the correct words when I am speaking or writing. And, I have trouble spelling . . . something I really never had trouble with. It is very, very frustrating.
Every time I have trouble with speaking, coming up with the right word, it never fails that someone tells me that they know what I mean, that it happens to them all of the time. Well, I don’t think so. It is not the kind of thing where you just can’t remember the name of an actor or a movie or when you know something and it is “on the tip of your tongue”. Or, walking into a room and not remembering what you went into that room for. We have all experienced those things. Chemo brain is different. It actually hurts my head when I am struggling to find a word or remember something that I was about to say. Words get jumbled, I can’t process more than one thing at a time. It is like an extreme overload on the brain. Examples, I say calendar instead of calculator (but, they are such similar words, right? Aaargh).
Fortunately my friends and family seem to speak chemo. Or, at least they are not letting on how much I don’t make sense some of the time. But, I know it is happening and I know that it will get better the further out I am from my last chemo. And, I know that as the stress of this disease lessens and I continue to improve and heal that my brain function will improve as well. Still, it is a very frustrating experience.
So, I think I need to get a hold of some foreign language CDs or MP3s. That might help. Maybe Italian would be good. I would love to go back to Italy. Of course Spanish would be far more practical.
Well, I am off soon for my stress test and then to meet my Mom at the support group and then home by the late afternoon to hopefully make some progress on my pre-surgery list.
Thank you to everyone who is saying prayers for me. A friend emailed me today to tell me that she was praying for me and that her sister had put me on a prayer chain at her church where over 800 people would be praying for my recovery. I so appreciate all of these prayers.
Say a prayer for my chemo brain too 🙂
Carmella, I am sorry I missed your call yesterday. I will try reaching you in the late afternoon today. Love to you and to everyone!
Cost of Herceptin . . .
1 AugOne dose of Herceptin ranges in cost from $6,254.95 to $9,599.00. Ouch. I don’t know yet what UCLA would charge. But, this is the range I have found. This is the price I have found for the every three week dose. (This is three times the amount of the weekly dose that I currently receive). Since I had the one week dose last week, I am looking to have two weeks worth – not three. So, hopefully the cost of that will be much less.
Maybe my insurance company will pay for it, if I am able to successfully dispute my oncologist’s decision. But, I don’t know.
I have heard of women maxing out their insurance because of the high costs of cancer treatments. Being on Herceptin for one year costs nearly $80,00.oo. And, the chemotherapy treatments each ran into several thousand dollars per treatment. That is all past. But, still, it is a concern of mine as I do have surgeries and continued treatment ahead.
I need to find out what my policy limits are and find out where I am with that.
Oncologist said no, now what?
1 AugMy oncologist said no to my request that I not go off of Herceptin. I had consulted with UCLA (where Herceptin was developed) and they told me that I should not be off of Herceptin for any period of time until I was done with treatment. But, my oncologist disagrees. Yesterday I demanded that he give me a medical reason for his decision to not follow UCLA’s protocol. His reason was that Herceptin poses a heart risk.
I have been on Herceptin since April 2nd. The heart risk is 1%. I have had two echocardiograms which have both come back as normal (a baseline before treatment and another two months into treatment which shows my heart function to be normal). I have had chest pains off and on throughout treatment. But, have not had chest pains in a month.
The 1% heart risk was shown in studies that involved women of all ages, all levels of health (including women with existing heart problems, high blood pressure etc.). They have done no study on 44 year old healthy women with no underlying heart problems to see if the risk to the heart from Herceptin is lower than on percent. But, the presumption would be (I would think) that my risk would be even lower than one percent.
I spent most of the day arguing with my oncologist’s physician’s assistant. Then she would take my argument back to my doctor, he would tell her what to tell me, then I would dispute that, and then she would go back to him, back to me, back to him and so forth – that was my entire day. He can’t even pick up the phone and speak with me directly.
She just kept telling me that with the risk that Herceptin could damage my heart that my oncologist would not allow me to continue it until one month after surgery – or longer – depending upon how long it took me to recover. His feeling is that there is an increased heart risk with surgery (the strain of surgery on the heart coupled with being on Herceptin). But, it is such a low risk. I told her – “look, we KNOW that I have cancer. We KNOW that it is aggressive. And, we KNOW that Herceptin is extremely effective in killing my cancer. So, rather than allow a possible, remote risk keep us from preventing a KNOWN risk (that of my cancer growing at a rapid rate if it is allowed to go unchecked by the very drug designed to kill it) I would rather follow what UCLA would do”. It seems foolish to do otherwise.”
And, I told her that he can’t have it both ways – two days ago I asked him to order a more comprehensive heart test (one that shows more of the heart function than an echocardiogram). He refused on the basis that I do not seem to have a heart problem. His exact words were that my heart function was normal and that he did not think that Herceptin was posing a problem for me. Now, he cites a concern over Herceptin affecting my heart as a basis for not following protocol and taking me off of Herceptin. I have checked – this is generally only done in patients who are elderly or who have an existing heart problem.
I got nowhere yesterday. And, the poor PA, she was practically in tears at the end of the day. I felt bad for her, but it is her doctor that has put her in this position. She agreed that if it were her – in my shoes – that she would have the same concerns.
So now I am waiting to hear back from UCLA to see if they can fit me in (at my own cost – which could be at a significant cost) for a Herceptin treatment next week. Or, to find out from Dr. Hurvitz if it is wise to skip a treatment.
I can’t believe I am having this fight with my oncologist. He is so arrogant. First of all, he made his decision without ever consulting the appropriate protocol (this was clear from the way he answered me in the first place: “Hmm, well, I guess . . . “). Not once did he ever point to a reason or basis for his guessing.
And, the PA yesterday kept telling me about “this one patient who had trouble . . . ”
To which I told her I did not want or need to hear about anecdotal situations. That I wanted my medical treatment based upon studies and current protocols. UCLA is one of the top breast cancer centers in the world. They developed the drug Herceptin and know best how it works and how and when to administer it. Yet my bafoon of an oncologist is so arrogant that he thinks he should supplant his opinion over UCLA’s well documented, studied and proven protocols. I am livid about this. The fact that I have to spend my time arguing over something like this is so frustrating.
I am putting it aside for the weekend (although UCLA may get back to me via email over the weekend – the nurse practictioner that I spoke to at the end of the day said she would see if she could get an answer from Dr. Hurvitz about my getting in for treatment next week – she said she might hear back over the weekend and that she would let me know via email – amazing). So maybe I will get some good news before Monday. But, either way, she said she would get back to me no later than Monday. Time is kind of the essence here.
In my reading today, I have learned that there are Herceptin resistant HER2 cancers. They do not know why some HER2+ tumors are resistent to Herceptin. But, they are developing new drugs that show promise and may be available in one to three years. I am wondering (from my little bit of back ground in microbiology) if, like strains of bacteria can become resistant to antibiotics, that HER2+ tumors can become resistant. This is what concerns me about the time off of Herceptin – if I am off of it for five weeks, will this give any remaining cancer an opportunity to continue to grow – unchecked by the Herceptin – and worse yet, will this unchecked cancer have the potential to become Herceptin resistant? I am not trying to borrow trouble here, but, the reason I can survive this cancer IS because of Herceptin. Without it the recurrence and mortality rate of this cancer is very high. Not good. Herceptin increases survival by leaps and bounds.
I do not know if the Herceptin is working on my cancer – I can only presume that it is because the cancer has defnitely decreased significantly during treatment. But, it is not known yet how much cancer is remaining (if any) and I don’t know if that is due only to the chemotherapy or to a combinatino of both. The only way I will know is to be on Herceptin and be monitored. In all likelihood the Herceptin is working and will work. But, I do not want to be off of it for any appreciable time.
Well, that is enough on that for now. I will write more when I know more. Please say prayers for me on this. I really appreciate it.
L.
AAAARGH!!!
31 JulOkay, so I called Dr. Hurvitz and asked about being off of Herceptin for five weeks and I was told, no way. That I shouldn’t be off of the drug at all, for any period of time, during treatment. As I thought. So now how to fix it. My current oncologist says I can’t have any more Herceptin until a month after surgery and that I should not even have a dose (as would normally be scheduled) next week because it is too close to surgery.
Yet, there is no evidence that this is what should be done. I don’t get it.
Anyway, I was told by Dr. Hurvitz’ office that I should get a triple does next week (or at least a double dose) so that then I can wait on my next treatment to be either two weeks or three weeks after surgery respectively. She said that either way, I should not be off of Herceptin for any time – meaning I need to increase the dose in order to allow for “time off”. But, it really isn’t time off because there will be a double or triple dose of the drug in the interim that will cover that period of time.
I called my oncologist and left a message with his physician’s assistant. Hopefully I will get a call back soon. I am inclined to go ahead with a double dose today (this would then make it three doses between today and yesterday). And then I would get my next dose (which would be a triple dose) in three weeks from yesterday. That would allow me two weeks without a Herceptin treatment after surgery. I should be able to get in for a treatment of Herceptin two weeks after surgery without too much trouble I would presume.
This is so frustrating. I should not have to spend my time babysitting my own oncologist – checking up on him and making sure he has made the right call. Fortunately, his behavior makes it painfully obvious that he doesn’t know what he is talking about – which I think is very fortunate for me – otherwise I would bounce along and not know any better and be at risk. (Actually, I would still be double checking no matter what, it is in my nature. But, that being said, if I were with Dr. Hurvitz, I would not feel the need to double check, she is fantastic and she is at the source – where Herceptin was developed and studied). But, my oncologist . . . aaargh! I mean the idea that there may be microscopic cancer cells in my body that per this moron’s “advice” would go unchecked by Herceptin for the next five weeks and given the possibility to grow and land somewhere else in my body and wreak havoc is just maddening. Okay, now I AM mad at him. This is pathetic.
So, I am waiting for his PA to call me back. Since it is already after 1:00 pm, it is doubtful that there will be time for me to come in for another dose of Herceptin today. So, maybe I can do it on Monday. I am just so frustrated by this guy. I am going to call my insurance provider right now and demand a case manager be assigned to my case. This is so ridiculous. And, just so you know, this is the ONLY protocol for Herceptin. The drug was developed and studied at UCLA. So they (the doctors at UCLA) absolutely know what the treatment should be and how often. There should be no dispute what so ever and there should be no departure from what is the known, verified, proven by clinical trials, protocol.
Please say some prayers I don’t have to battle this out with my oncologist. I don’t get the sense that he is open to hearing someone else’s opinion – that seems fairly obvious from the fact that he has not even checked to see what the protocol is supposed to be for Herceptin treatment.
I am so done with this guy.
cancerfree2b 