Topless March 9, 2014Posted by Judy in Musings.
Tags: breast cancer, chemo, healthcare, radiation, surgery
1 comment so far
My entire experience at Mayo would have been simplified by me running around topless. Everyone wants to do an exam, and then you are stuck sitting around in a totally crazy-looking and seriously ill-fitting gown, cape or poncho. Being topless would solve the ill-fitting problem as well eliminating the need to constantly be changing in and out of your clothing. Then again, I’d be topless, which would garner all sorts of stares and gasps. So maybe that topless idea should get scrapped!
Our final day at Mayo was a full one. I only had two appointments, but each appointment took an hour and a half, plus waiting time. (As an aside, the biggest benefit of getting treatment at Mayo is that the doctors actually take their time with you. There’s none of this rushing off to the next patient. They asked questions to get to know me as the patient as well as get to know DH, and they were always saying “Is there anything else I can answer for you?” I think all physicians could improve their service by being less time-driven.)
I had pretty high expectations for the visit with the radiation oncologist as I figured a place like Mayo would have some pretty tricked out radiation toys to work with. At the time, I was completely shocked to find that they don’t do heart gating. (Delivering the radiation dose when the heart is out of the dose field based on your heartbeat.) In retrospect, I think that we may have a misguided idea of how our local hospital delivers radiation to left-sided breast cancer patients. Mayo does a breath-hold technique whereby the patient takes in deep breaths, thus expanding the chest wall and moving the heart out of the way. Now that I think about it, it’s quite possible that Carle does it that way, too, and we just understood it differently. In any case, I don’t see any reason to do radiation therapy in Minnesota since their toys don’t seem to be more advanced than the ones available locally. I will say that the Mayo radiation oncologists (the resident and the “real” doctor) were pretty great. They suggested that I might look into proton radiation rather than the traditional because the damage to my lungs would be greatly reduced. Being a singer who is accustomed to using the full capacity of my lungs, I would notice even a slight reduction in capacity due to scarring. This isn’t something I had previously thought about, but definitely appreciated the doctor putting the bug in my ear.
They also established that I am what you would call an “interesting case”, which is something that no-one ever wants to be. This came as no surprise to me as every step along this journey has afforded me the dubious honor of being “in the minority”, “interesting”, or “not textbook”. Let’s look at all of the ways, shall we?
- I got breast cancer while lactating. Only 3% of breast cancers fall into this category.
- I got breast cancer at a young age. Only 5-10% of women with breast cancer are under age 40.
- I have lobular breast cancer, which accounts for only 10-15% of all breast cancers.
- I have pleomorphic lobular, which account for only 1% of all lobular cancers.
- I found the cancer early, while it was still in an early-ish state, which is quite uncommon.
- I had positive margins after surgery. Nationally, this happens to 25% of patients and locally it happens to 3%.
- I have two involved lymph nodes. This means that I neither fall into the “definitely need radiation” camp (4+ involved) nor the “nope, don’t need it” camp (no nodes involved), thus making me an “interesting” case.
Speaking of lymph nodes, there seemed to be a bit of a disagreement as to what to do about the lymph nodes. The surgeon and med oncologist felt that an axillary lymph node dissection (removal of all of the lymph nodes in my left armpit) was necessary because of the aggressiveness of the cancer, my young age, and the diffuse manner in which lobular cancer spreads. The radiation oncologists, on the other hand, felt that a full dissection could possibly be overkill, especially if radiation was going to be applied to the axillary area. They felt that a lymph node exploration would be useful. In this case, a few nodes would be removed during surgery which would immediately be sent to pathology who would do an analysis and return the results while I was still in surgery. If the nodes were clean, then no further nodes would need to be removed. If a high percentage were cancerous, then the rest of the nodes would be removed. This method really makes more sense to me, but at this point, the Mayo radiation oncologists are the only ones that agree with me.
The medical oncology fellow not only gave his opinion on the necessity of lymph node dissection, he was also very frank about the fact that this cancer was a bad actor and that I needed to be very aggressive in my treatment approach, even if that meant some things were overkill. It took me aback for about half a second, and then I appreciated his frankness. He also gave some very specific info as to what type of chemo would be recommended and how often. It seems that I’d be eligible for the standard drugs: Adriamycin, Cytoxan and Taxol. The first two would be lumped together for 4 cycles given every two weeks, and the last would be given weekly for 12 weeks. It could also be done every two weeks for 4 cycles, but Taxol carries a greater risk of peripheral neuropathy, which translates into issues with my vocal cords, and we all know I’m not down with that. Spreading it out over twelve weeks would decrease the chance of neuropathy.
Dr. Medical Oncologist Fellow also talked about the possibility of doing chemo now, and then finishing up the surgery after chemo. This is something that had also been suggested by Dr. Surgeon as a way to give me more time to think about my surgery options. Both doctors felt that doing this non-traditional approach would also inform as to how the cancer responded to the chemo and could potentially allow for a less aggressive surgical approach.
Prior to the two appointments, we were trying to get the ball rolling to do surgery at Mayo ASAP and then I’d receive chemo and radiation would be locally. After the appointments, specifically the one with the med oncologists, we decided that the intra-adjuvant chemo made the most sense. (Chemo, then surgery.) We decided to head home to get chemo and then we’d contemplate which surgery to do and where to have it done.
This was all well and good until Dr. Ray, my local surgeon, returned my call from earlier in the week while we were driving home. I had originally planned on talking to him about lymph node dissection, but instead led with what we had ultimately decided: chemo, then surgery. At the end of our lengthy conversation (which was briefly interrupted because I ran out of minutes; D’oh!), I was reminded why I really like this surgeon. He’s the perfect mix of “here’s what the research says” and “here’s what my scientific opinion says” and he delivers all of that with pithy clarity in a manner that inspires complete confidence. It’s a thing of beauty, really. (The Mayo surgeon did not possess this quality and was rather slippery and obtuse with her responses.) Dr. Ray didn’t agree with the intra-adjuvant plan mostly because it would present a sparsely traveled treatment path that could be pushing the envelope. (He’s certainly not averse to pushing the envelope given that he did so in recommending a lumpectomy with two tumors.) He also made it clear that doing so would not be following evidence-based medicine. If I chose to follow that path, he would support me, but he felt I should be fully informed. (It should be pretty clear by now that I appreciate being fully informed!) We also talked about lymph node dissection, but I’ll leave that for another post since I’ll be asking him more questions at my appointment next week. Suffice it to say that the discussion of dissection is probably one of the most important discussions and treatment decisions to date since any little cell left behind in a lymph node could potentially go on a journey and I’d end up with metastatic breast cancer. As I’ve mentioned before, it’s the metastasis that kills women, not the localized cancer in the breast. So, stay tuned for more info on that later in the week.
By the end of my conversation with Dr. Ray, the plan had changed, yet again. I decided to do surgery locally first and then do chemo. Even though I feel more comfortable with the anesthesiologists at Mayo, I am leagues more comfortable with Dr.Ray and he understands and supports my vocal preservation interests. He was quite sure that the local anesthesiologist would be willing to do the sizing down method of anesthesia, especially if I spoke to them before hand. Now that I know the proper terminology to use, I feel better equipped to advocate for myself. Not only that, I’m confident that Dr. Ray will advocate for me in the operating room, making sure that my cords are preserved.
So let’s recap: over the course of 3 days, I changed my mind about the treatment plan three separate times.
- Version 1: surgery at Mayo, chemo then radiation at home
- Version 2: chemo at home, surgery (location TBD) then radiation at home
- Version 3: surgery at home, followed by chemo then radiation at home
The only constant in the versions is that radiation would be at home. Everything else changed at the drop of a hat. At this point, I’m locked in to version three and thanks to spending a week getting a second opinion, I’m satisfied that it is the correct choice. The surgery is scheduled, it’s going to be a big one, and it’s not a decision I made lightly. Once I discovered that two potentially problematic lesions existed beyond what had already been removed, a re-excision was out of the question. I was firmly in the unilateral mastectomy camp. It then became a matter of weighing the pros and cons of a unilateral versus a bilateral mastectomy.
Having a bilateral mastectomy decreases the chance of getting breast cancer by 90%, especially in those women who have a strong family history of breast cancer. (If you recall, eight people in my family have had breast cancer. I’d call that a strong family history!) Several factors that could increase the chance of a contralateral breast cancer are a lobular histology, first breast cancer before the age of 50, and a multi-centric cancer. While a multi-centric cancer has not been confirmed (tumors in more than one quadrant), there is a possibility that disease exists in more than one quadrant and it is certainly multi-focal (several tumors in the same quadrant), in addition to being lobular and showing up before I turned 50. These three factors, as well as a strong family history, point towards a double mastectomy being more prudent. If I take Dr. Medical Oncologist Fellow’s words to heart, I need to be as aggressive as possible to come out victorious, which also points to a double mastectomy.
After sifting through all of the information, weighing the pro and cons and realizing that rocking the uniboob wasn’t really my thing, the decision became pretty clear: double mastectomy. Over the past day or so I’ve come to the realization that this surgery is going to require quite a bit more preparation. I’ll need to figure out a sleeping strategy since a mattress on the floor just isn’t going to cut it. I need to go buy a bunch of button up shirts to wear in the weeks after the surgery. I should make several special mastectomy pillows for my arms and possibly some sort of apron to hold the drains. And finally, I need to mentally prepare and say farewell. I’m sure after meeting with the surgeon on Tuesday, I’ll have more things to add to my preparation list. It’s alot to take in, but I feel at peace. I’m no longer mulling over all of the options. The door has been opened and I intend to walk through it with confidence.
Come March 20th, I’ll be topless.
Conveyor belt medicine March 4, 2014Posted by Judy in Musings.
Tags: anesthesia, breast cancer, second opinion, surgery
Back in December, when this whole cancer process began, I was warned of a phenomenon called “conveyor belt medicine”. The patient is mammogrammed in the morning, biopsied in the early afternoon, diagnosed in the late afternoon and surgery is scheduled for the next day. I thought for sure someone was telling me a tall tale! No way could there really be a place that pushed you through as if you were on a conveyor belt. I’m here to tell you, those places do exist. As a matter of fact, I’m at one of them right now: Mayo Clinic. Now, I know there are many of you who have said so many positive things about Mayo and you are probably ready to throw rotten tomatoes at me right about now. I guess I’m okay with that, but before you start chucking vegetables at me, just hear me out.
When you look at the brochure for the Breast Clinic, they very clearly present this conveyor belt model. You arrive to the belt, give them your records, and then merrily hop on. Your first stop is with a general breast doctor, a homeroom teacher, if you will. They take a history, get all of the details, and then decide who you need to see after that. Sometimes it’s a science or math teacher, sometimes a reading teacher. Along the way, you may hop off of the belt to get another test or you might experience a little detour, but you hop back on and are shuttled on down the line. The homeroom teacher keeps popping up to see how things are going and to help coordinate visits and tests. The goal is that at the end of 5-7 days, you’ll have a treatment plan with the surgery either scheduled or already performed. Their claim is that surgeries can often be scheduled for the following day. There are advantages to this system: 1) the dreaded wait time for test results is dramatically decreased and 2) you get to see many specialists in a short amount of time. The biggest disadvantage is that you have no time to think and it’s very easy to get railroaded into something. By now, you know that I don’t like to be rushed or railroaded into much of anything, especially not major healthcare decisions.
To sum up my experience here thus far: it’s definitely a conveyor belt system where all of the people involved are convinced that you need to take action right away and that said action will be taken at Mayo. All of the people I’m met have been lovely and competent and they all would certainly provide great care. I’m not, however convinced that they would provide care superior to that which I have already received. And to be honest, I’ve been annoyed at the “Oh, you’re at a better place now, you will get better care, there won’t be any mistakes here” attitude. While I do think that the radiologists in my hometown were off their game, I also think that my surgeon and medical oncologist have been totally on top of their game and are equally as skilled as folks here. Evenso, I’m glad that we have had this experience as I’ve learned a few key pieces of info which have made the journey worthwhile. I have two more appointments tomorrow before I make my final decision, but I wanted to catch you up before things drop into warp speed.
The first doctor I met was positively fantastic. Within the first 2 minutes, I knew she was a good match for us. Her sense of humor was great and she was able to handle DH’s unique sarcasm without missing a beat. Not only that, she understood and didn’t downplay my interest in preserving my vocal cords. As it turns out, she took voice lessons for 12 years and even auditioned for the Met years ago. Once she knew that vocal preservation was at the top of my value system, she made sure to lead with that information whenever she talked to any other doctor about my case. “Hi, this is Dr. X and I’m sitting here with a lovely woman who is a classically trained singer. She also has breast cancer and I’d like to have her talk to you about X.” I’m quite certain that any other doctor would not have placed so much importance on my voice. She really has gone to bat for me in that department, and for that, I am so very thankful. This worked out in my favor today when trying to get in to talk to an anesthesiologist. If you recall, the local doctors were rather slippery and I never was able to get a satisfactory response out of them regarding how to preserve my vocal cords. It seemed that the same was going to happen here, but my homeroom teacher went to bat for me. She gave her opening speech and asked if I could have a consultation today.
Anesthesia: Can’t this discussion happen the day of the surgery?
Dr. X: Well, she has some extra questions and concerns regarding vocal preservation.
Anesthesia: I think we can deal with this the day of the surgery.
Dr. X: Okay. What happens if she is told of the risks and benefits on the day of, isn’t happy with what she hears, and then cancels the surgery?
Anesthesia: *sigh* Okay, I guess she should have a consult.
Thank you, Dr. X!
The anesthesia consult ended up being the single most informative appointment thus far. The doctor was very personable, which, as I understand it, is not the norm for anesthesiologists. He took my interest in vocal preservation seriously rather than dismissing it like the local doctors had. During our conversation, I learned three things:
1) The risks of an LMA: possible aspiration of stomach contents which could result in pneumonia since the airway is not totally sealed off.
2a) How intubation works: a tube is place between the cords and a bulb is inflated below the cords to completely seal off the airway.
2b) In order to place less pressure on the cords, the anesthesiologist can choose a tube one size down from what he might normally use without compromising safety or effectiveness.
3) A way to totally avoid general anesthesia is to do a paravertebral block where the nerves that enervate a particular area of the body are numbed so that surgery can be performed.
All three of these tidbits were thoroughly explained with pictures and diagram and then he gave his recommendation for which method he thought would be the best. (Intubation with a slightly smaller tube.) I left the consultation feeling like I had three good options for vocal preservation. In addition, the visit would be documented in my chart, so other anesthesiologists would see the outcome and I’d be flagged as a classical singer. As a result of this visit, I am seriously considering having the next surgery performed here.
And now you are probably wondering what surgery I’m talking about, so I should back up a bit. I brought copies of all of my records here and rather than running new tests, they reviewed my older tests. The Mayo pathologists looked at the slides of the tumors. The Mayo radiologists looked at all of the scans. The pathology all turned out basically the same. The scans, however, told a slightly different story. (Keep in mind that this is the MRI that was done back in December, long before the surgery.) This is the MRI that showed nothing new, according to the local radiologist. The Mayo radiologist saw a .6 cm something at 11 o’clock and a .8 cm something at 12:30. It’s possible that these somethings are benign, or that it was an over-exposure of the background. The upshot of the matter is that whatever they are, they need to come out. At this point, so much tissue has been removed that taking more tissue out is going to render me deformo boob. Not only that, the surgeon I met with today recommended a unilateral mastectomy because I have multiple tumors, I’m young, and the tumors are lobular (aka, sneaky boogers). We had a long and sometimes confusing discussion with the surgeon today in which she recommended a mastectomy as well as a complete lymph node dissection (removal of the lymph nodes), and we discussed the merits of a double mastectomy. I also talked about the vocal cord issue, which she totally blew off. Fortunately, she’s not the one that would be managing that part of the surgery!
Anyway, so I’m currently deciding between a single and double and am leaning more towards double to reduce the chance of recurrence and because with a double, I don’t have to get a prosthetic. (Well, I guess I wouldn’t HAVE to get one with a single mastectomy, I could just rock the uniboob. That would be weird, though.) The one drawback to doing the surgery at Mayo is that I would feel like I was breaking up with my local surgeon. I’ve been very happy with the care he has provided me and I’d feel like I was ditching him for another surgeon that wasn’t necessarily better, when in reality, I’d be ditching the local anesthesiologists and the surgeon would be an innocent bystander casualty. Maybe I can convince him to come up here and be a guest surgeon. That happens on TV shows all the time, so it must be realistic, right?
So getting back to the key pieces of info I’ve learned thus far. The first was regarding anesthesia options. The second piece of info totally threw me for a loop. You may recall that during the CT scan, they “discovered” a fibroid. I say “discovered” because I already knew about this. As such, I declined to have an ultrasound. After talking with the first doctor, we decided to do the ultrasound because the fibroid seemed to not have shrunk at all since pregnancy and because my uterus was enlarged. I got the ultrasound and half an hour later, I was reviewing the results with the homeroom doctor. Yes, the fibroid is still there, but there’s something else: a cyst on my ovary. Yep, you can go ahead and scream now, I’ll give you a minute.
I was prepared to deal with another tumor in either breast or even several more tumors. I was not prepared to deal with a cyst on my ovary. The cyst is small, round and the edges are well-differentiated, which is good. The concerning part is that the cyst is vascularlized, meaning it has its own vascular system. This could be no biggie, or it could signal a malignancy. Blech!
I had a CA-125 test done. This is a test used to measure the spread of disease for ovarian cancer. It’s not a particularly good way to find the cancer because the levels can be pretty low, even when cancer is actually present. But, it’s a good place to start if there is a suspicion. I was able to get in the following day to talk to a gynecological surgeon (aren’t all gynecologists surgeons?). I spent the night before imagining that she would tell me that I had ovarian cancer.
I did not sleep well.
Fortunately, the test came back within a normal range. That doesn’t mean that it’s not malignant, but it also isn’t clearly benign. Consequently, I get to have the cyst monitored for several months, during which time I’ll have an ultrasound and a CA-125 test done every 6 weeks or so. The doctor wanted me to get another test called an OVA-1. This is a more accurate test and gives more information, but it’s expensive and only one lab in the country does the test. Of course, this lab is out of network for me. Hence, I opted to hold off on the test for the time being, especially since the gynecologist felt it was more important to first deal with the breast cancer. So, the cyst will get to hang out for a while, or maybe it will reabsorb and disappear by the next ultrasound. Either way, I’m setting it on the back burner for the next month or two.
The final appointment to tell you about was with the geneticist. We really were hoping to speak to someone who demonstrated more competence than the first geneticist, who made the bewildering statement “I don’t do statistics.” Happily, this geneticist was more with it. The fact that I’m BRCA negative means just that: I’m BRCA negative. It doesn’t, however, mean that there isn’t some sort of hereditary component. It could very well be that there are several genes that are causing so much breast cancer to show up in my family. At this point, though, there just isn’t enough information about how multiple genes interact to be able to say, “Yes, you have this mutation and it means this.” BRCA genes are the only breast cancer gene with clear implications at the moment. He gave us the option to do further multiple panel testing for other genes. Since the result wouldn’t inform the treatment plan, and the insurance company likely would not pay for the $4000 test, we opted to not undergo the testing at this time. In a few years, once there is more information, we might revisit the option.
So there you have it. All in all, it has been a good and interesting experience. Certain aspects have left a bitter taste in my mouth (“We’re the best! Pick us! Pick us!”), but there have been quite a few positives (Very personable and knowledgeable doctors who are willing to spend copious amounts of time with you. Everyone has spent a minimum of half an hour with us, with most spending over an hour. That was nice.) I’m anxious to see what that radiation oncologist has to say tomorrow. I’m really hoping she’ll say that the positive margin on my chest wall will not necessitate radiation. Keeping my fingers crossed about that one. I’m also curious to know what the medical oncologist will have to say regarding whether chemo will be necessary and if so, what type. Once we’ve met with those two, we should be ready to make the final surgical and treatment decisions. I know I’m definitely tired of mulling things around in my brain and am ready to just pick something and move on!
Stay tuned for the final decision!
Exploding February 23, 2014Posted by Judy in Musings.
Tags: breast cancer, decisions, surgery
add a comment
That’s what my brain has been on the verge of doing for the past two days. My brain is swimming with so much information, and the pressure of having to make such a difficult decision in a short amount of time is about to make my brain explode! One minute I think I’m close to making a decision and the next minute, I look at it from a different angle and I’m back to square one. So I’m back with another post asking for your help. I know that many of you aren’t comfortable giving your opinion for such a big decision, and many have said that you don’t feel qualified. Here’s the thing, I’m not looking for a professional opinion. I already got that from my doctors. Right now, I’m looking for the opinions of you, my friends, those who know me, those who have gone through similar experiences, those who have never experienced anything like this. I want to know your thoughts.
I met with my medical oncologist on Wednesday and based on the information we got there, it would seem that the Grim Reaper is no longer knocking at my door. He seems to have moved on for the time being. Hubs and I have taken the new information, mashed it up with the older info and have been spinning it around and around, left and right, end over end trying to find an answer, but to no avail. We have come to the following two conclusions:
The surgery decision is going to be made mostly based on our own thoughts and less on the doctor’s recommendations because they are seeing things from a very different perspective. We weren’t comfortable making a final surgery decision by Tuesday, so I’m canceling the re-excision and we are going to get a second opinion at Mayo Clinic this week.
We should get a second opinion regarding a post-surgery treatment plan. We learned that there’s a standard of care that most institutions follow for chemo, so getting a second opinion for that would be less helpful.
Let me catch you up on the new information, and then I’ll look at each of the surgical options.
- The tumors are fast growing, but not to the point where I needed to have started chemo yesterday. We have time to get the surgery right and to carefully decide on a chemo plan.
- With a mastectomy, I won’t need radiation because I have fewer than 4 lymph nodes involved and my tumors are all smaller than 5 cm.
- If there are other tumors hiding out, and I choose a re-excision, radiation should take care of those tumors. I’m not really sure I trust that information, though. Not that I think the doctor is lying, I just don’t trust it.
- The fact that one tumor was right up against the chest wall doesn’t worsen my prognosis. Anything that is left over near the chest will be blasted with either chemo or radiation. Again, I’m a little skeptical about this bit of info.
- Lobular cancer tends to be more likely to produce tumors that pop up everywhere than it’s more popular counterpart, ductal cancer.
- The her2 status of the tumors is up in the air. The biopsy showed it was her2 negative, which was good. Once the entire tumors were removed, the testing results were on the fence between positive and negative. The chemo plan is very different for each, so it’s important to know which way it is leaning. The doctor is ordering a “fish” test which will tip the scales (no pun intended) one way or the other and those results should be in within the week.
- The oncologist feels that all of the information on the pathology report points to this disease being very treatable.
The three surgical options are re-excision (breast conservation, aka BCT), single mastectomy and double mastectomy. I have been applying the following measures to each of the options: vocal preservation, radiation and peace of mind.
Vocal preservation is probably the single most important measure. My vocal cords are so hugely important to me, I’m not sure that I can even put it into words. If my cords were damaged in surgery such that my ability to sing was compromised, I would be utterly devastated. Some surgeries are conducive to the use of LMA (laryngeal mask airways), while others require intubation. In terms of preserving the vocal cords, a LMA is going to provide the best outcome as it sits atop the cords rather than going in between the cords. I would think that minimizing the number of necessary surgeries would then minimize the possibilities that intubation would be necessary, thus minimizing the possibility of vocal cord damage.
Radiation is probably the easiest part of cancer treatment, but it’s still rather toxic. Technological advances have made it possible to really fine tune where the radiation is going and to cut down on the amount of damage to “bystander” organs. This is especially important in my case since I have positive margins on my chest wall, which is near the heart.
Peace of mind is something that oftentimes isn’t discussed in the office setting, but I do think it is important. In my case, peace of mind has two components: survivorship and recurrence. Everyone wants to know if they will survive the disease. Interestingly, the survivorship rates are the same for all three surgical options. (Although, there was a lit review published in 2013 stating that evidence does not clearly show that women under 40 have the same survivorship between BCT and mastectomy.) Recurrence rates, which measure the likelihood that cancer will return, either in the breast or to distant places in the body, are also tricky when looked at in younger women. Some studies showed that recurrence rates were very similar while others showed there was a marked difference.
This is the chart I drew up to help me see how everything came together.
|BCT – lumpectomy||single mastectomy||double mastectomy|
|Vocal preservation||LMA||LMA||LMA? Intubation?|
|Peace of mind – recurrence||14%19%||16%6%||no information|
|Peace of mind – survivorship||10 year – 84%15 year – 77%||10 year – 84%15 year – 79%||no information|
With both BCT or a single mastectomy, I would very likely be able to use a LMA. The surgeon’s nurse practitioner wasn’t able to answer whether the longer double mastectomy surgery would be eligible for LMA. If I had to be intubated, it really wouldn’t make sense to do that surgery since then I’d be using intubation to avoid intubation. But, if I could still use an LMA with a double, then it would be a no-brainer based on that measure.
The radiation measure is pretty straight forward, for the time being. I’m assuming that I won’t need it if anything is cut off. But, I’ll be meeting with the radiation oncologist on Monday, so I’ll be asking if the positive margin on the chest wall dictates a need for radiation regardless of the surgery.
Peace of mind is the really tricky measure. As far as survivorship goes, it’s a non-issue since it appears to be the same, or at least that’s the best data available right now. The recurrence number is the murkier one. If the difference really is only 2 percentage points between the surgeries, that amount is trivial. But 13 percentage points is getting close to being an amount that actually matters. So which one is it? Who knows!
I suppose the real problem here is a lack of definitive information. Some of the gaps in info can be easily filled in by talking to the appropriate doctors. Other gaps, like in the recurrence category, are going to remain ambiguous, thus making the surgical decision much more complex. This is partly why we are heading to Mayo to see if they have any other ways to provide me with the best outcome while optimizing the above measures.
ETA: I started this post on Thursday. When you are mulling things over and over and round and round, things change quickly. At this point I’m not mulling things over as intently, but given the fluidity of the situation, I’d still be happy to have you share your thoughts!
Children February 21, 2014Posted by Judy in parenting.
Tags: breast cancer, children, parenting
Every parent thinks that their progeny are amazing, adorable, beautiful and smart. And really, that is how it should be. We should support and uplift our children and help them feel confident. Even if the rest of the world doesn’t think you have the cutest or smartest or most amazing children, it doesn’t really matter. We keep believing in our kids and instilling confidence in them.
Sometimes, things will happen that make you realize that, “Wow, my child is more intelligent than I gave them credit for.” Over the past 3 months, DH and I have seen this scenario play out several times with the kids. Within half an hour of getting the diagnosis phone call, we sat the babes down and explained what was going on. (For reference, they are 6, 5, 3 and 1.) We explained things in relatively simple terms: “There is something growing in my body that isn’t supposed to be there and it can cause alot of problems and it could make me very sick.” The older two asked lots of questions and we explained that yes, this could end in death. After about 20 minutes, their attention spans we exhausted and they ran off to do what children do. I figured they probably had a basic understanding but wasn’t really sure.
A few days later, I was talking to the 5 year old, trying to figure out what she understood.
Me: Do you know what I have?
R: Yes, you have breast cancer.
Me: Do you know what that means?
R: It means you could die from it.
I was so floored, that the conversation ended right there. She gave ma a quick squeeze, flashed her million dollar smile and ran off to play.
The 3 year old has a more simplistic understanding, but he is constantly surprising me with his ability to correctly use cancer lingo.
D: Mommy, when you have the lumpectomy, that means they are going to remove the cancer, right?
D: And then chemo will get any small cells that were missed, right?
Me: Uh, yes, that’s correct.
Another time, we were talking about chemo, and the 6 year old was asking questions for which I did not have answers. (How long will you be on chemo? How many cycles will you have?) The 5 year old pipes up with:
R: Mommy, will you lose your hair with chemo?
R: Well, we have a scarf downstairs that you could use to wrap around your head. We’ll make sure it’s clean and ready for you to use.
Her empathy and ability to think ahead and create solutions floored me.
Just yesterday, I was sitting at the kitchen table, working on a table to help me weigh the different surgical options. (Stay tuned for another post with those deets and with an explanation of the chart.) Children are naturally curious, and they asked what I was doing. Immediately, the 6 year old came over and wanted to see. He was asking about the recurrence rate and what that meant.
N: So breast conservation gives you a 15% chance and a double mastectomy gives you a 5% chance.
N: Seems like the double mastectomy is better then.
Me: Probably true.
N: But then, of course, you wouldn’t have any breasts.
I don’t know why I was so surprised. He has proven time and again that his critical thinking skills are pretty intense. But, I was once again, floored.
The 5 year old wanted to get in on the conversation and give her opinion.
R: I think a single mastectomy would be better, because then you’d only have one fake boob.
That comment just made me laugh.
So I guess at this point, I should stop being so floored by the babes. It would appear that they have a very good understanding of what is happening and they seem to be processing it quite well.
I can’t tell you what a huge relief that is.
“Behind door number two!” February 19, 2014Posted by Judy in Musings.
Tags: breast cancer, decision making, pathology
add a comment
(A little warning: this is a looong and probably confusing post. Just so you know!)
Do you remember the game show, “Let’s Make a Deal?” While it was fun to watch the show, I could never have been on it . . . . I don’t really like surprises and that game was fraught with them. When I was pregnant with #1, a friend wanted to throw me a surprise baby shower. The hubs convinced her that wouldn’t be a good idea since I don’t like surprises. I like to think that I’m an orderly and organized person, and surprises just throw a monkey wrench into everything. I’m okay with spontaneity, just not surprises.
Some surprises are more manageable than others. Birthday parties, for example, are okay. Surprises in health care, not so much. Yesterday was results day. Since I don’t like surprises, I called on Monday to see if they would give me the path results beforehand. Going in to my appointment on Tuesday, I already knew that some of the lymph nodes were involved and that some of the margins were not clear. Armed with that information, I had a list of questions ready to fire away at the surgeon. He came in and straight away started drawing pictures to explain the non-zero margins. These margins are an issue because that means that not all of the cancer was removed. There were several places where the margins were not clear.
1) The yellow portion. This is the margin in between two specimens, so it’s really inconsequential since that margin is in the center of two pieces that were removed.
2) The orange portion. This is potentially a problem because this part of the specimen was cut all the way back to the chest wall so there isn’t any breast tissue left to remove. What does that mean? It means that the cancer went all the way back to the chest muscle wall. It could be that the cancer cells stopped right at the chest wall, or that they continued on. The way to deal with that cancer is to use radiation. This would be no biggie if the tumor was on the right. The tumor is on the left, so we are now presented with the problem of how to radiate the chest wall muscle without radiating the heart. This particular hospital happens to have an advanced technology whereby they are able to take a 3-dimensional movie right before the radiation which allows them to time the arrival the radiation pulse such that it will miss the heart. But, it’s not a perfect system.
3) The red portion. The surgeon removed this extra section because during surgery, he felt something that didn’t seem right, so he chose to remove the section. The picture shows that the margin shared between the brown and the purple rectangle is clear. It’s the outside margin of the brown rectangle that is not clear, meaning that there is still cancer left behind. Tumor number three. SURPRISE!! WT!@&#%
This is my version of his picture. Keep in mind that breasts are three dimensional. Well, I guess not all breasts are, but mine are. Anyway, I’m drawing a three dimensional object on a 2 dimensional plane. So, prepare to be a bit confused.
Firstly, how the HECK did they miss this tumor on the MRI? It’s .9cm, which is just a smidge smaller that the tumor RIGHT NEXT TO IT!
Secondly, how do we know that there aren’t other tumors hiding in plain sight that were missed by the radiologist? Gah!!
I’ll take a brief detour here to say that I have no issues at all with the surgeon. He has done his job to the best of his ability and has been nothing but forthcoming from the very beginning. I really, really like this surgeon.
- He does not have a god complex and is quite humble.
- He is very thorough in his explanations, using diagrams and examples.
- He does his best to conserve the breast, moving to mastectomy only when it’s absolutely necessary.
- He values the opinions of the other doctors on the team such that he said I should see what the oncologist has to say regarding the non-negative margins.
- Hubs appreciates that the surgeon has an appreciation for healthcare policy and has an interest in making some changes. In fact, hubs and the surgeon got into a little discussion about policy. As the surgeon was leaving and shaking DH’s hand he said, “We should spend some time together outside of the medical office.” Hahahah, the surgeon wants to hang out with the hubs! Awesomenes =) Suffice it to say, we really like the surgeon.
The same cannot be said for the radiologists and their apparent inability to accurately read the imaging. Let’s count the ways that they have messed up.
- A mass is found and a biopsy is ordered.
- During the biopsy, another tumor is found. (Whoops!)
- An MRI is performed and they determine that there are no new tumors in the left breast and nothing in the right breast.
- During the lumpectomy, another tumor is found. (Whoops!)
Are we seeing a pattern here? I have to say, I have no confidence that there aren’t more tumors hiding out in the left or that the right side is actually clear. That’s not really a life-affirming feeling!
So turning again to the non-negative margins and the options for rectification. The surgeon recommended a follow-up surgery to do a re-excision where he would remove a little extra tissue in the red areas. I thought he said he would remove one millimeter, but in retrospect, that seems like a really ridiculously small amount to remove. It’s probably more like 2-5 millimeters. The tricky thing is that it’s really just an educated guess on the part of the surgeon. No imaging exists that would be able to guide him in deciding how much to remove. He just goes on intuition and past experience.
The surgeon readily admitted that the re-excision wasn’t strictly necessary since the outcomes would not be changed. That, of course, begs the question: why do it? His response: so that if there is a future recurrence, we can know that we did everything we could to remove all of the cancer. Translation: cover your butt.
At this point, I’m scheduled to have the re-excision next Tuesday. But, we aren’t settled on whether or not that is the surgery to do. I thought that the mastectomy conversation had been shelved. The appearance, however, of the second surprise tumor coupled with the other information in the pathology report, has brought that conversation back to being front and center.
I’ll come back to that discussion in a minute as I need to fill you in on the rest of the pathology report. The upshot of the matter is that 95% of the news on the report was bad.
1) Of the three lymph nodes that were removed, two had cancer, although none of the cancer cells had busted out of the lymph nodes. (This is the single piece of positive info.)
2) One tumor is 1.5 cm, while the other is 1.0 cm.
3) The stage of the cancer is IIa, which puts it in the early-ish detection category.
4) The tumors are aggressive, very aggressive. They got a grade of 3, with 3 being the highest grade possible. This means that the nuclei have a “marked variation in size and shape, occasionally with very large and bizarre forms”. (I don’t know why, but I find it hilarious to see the word “bizarre” in a formal medical report!) It also means that the cells are dividing at a rapid rate.
5) The tumors all seem to have invasive and in situ properties. This basically means that among badly behaving cells, these tumor cells are behaving especially badly.
See, not a whole lot of good news here. My mantra today has been: It could always be worse. It could be inflammatory breast cancer or stage 4 cancer! As I understand it, all of this information means that I’ll be hitting a chemo cocktail bar sometime in the very near future. (So long, hair!) It also means that this is going to be a longer and more difficult fight than we first imagined.
When thinking about breast cancer survival, what you really need to think about is metastasis. No-one dies from breast cancer since the breasts aren’t vital organs. You can manage recurrences in the breast for quite a long time. What does cause death is when the breast cancer has metastasized to the bones, liver, brain or lungs. It would follow that in order to increase your chances of survivorship, you would need to avoid metastasis at all costs.
And now, back to the mastectomy discussion. Given that there are now three aggressive tumors, and that tumors keep popping up unexpectedly, it would seem that the chances of other tumors showing would be rather high. The more tumors you have showing up, the greater the opportunity for the cancer cells to metastasize to the lymph and beyond. In my head, I’m thinking that removing as much breast tissue as possible would make it more difficult for the tumors to form and thus metastasize. But then again, this could be overkill. It’s also quite possible that the chemo and radiation will take care of the cancer cells such that they won’t be a problem. That, coupled with increased monitoring from now until forever could be a good way of staying ahead of the problem. I’m left with a difficult decision and frankly, I have no idea what to do. So I’m reaching out to all of you for advice. Based on the current information, what would you choose and why? I’m being serious here. I actually want and need you to give me your opinion. If you know me IRL, you can email me. FB friends can message me there and blog followers can message me at my blog email address: adivamoment dot gmail dot com.
The past 24 hours have been the most challenging yet. I’ve been forced to actually sit down and contemplate my mortality and I’ve experience a new emotion: fear . . . pure and unbridled fear. Up until now, I’ve been able to face the challenges in a very practical manner, maybe even a little bit detached from the reality. In light of yesterday’s information, fear is the dominant emotion. I read about aggressive tumors and those with a high mitotic rate and then I read about the poor prognosis associated with those factors and my heart just stops.
I still believe in the Great Physician and I still have a huge amount of faith. But that doesn’t preclude me from having enormous amounts of fear. Pray for me, friends!
Surgery day – Part 2b February 16, 2014Posted by Judy in Musings.
Tags: breast cancer, recovery, surgery
1 comment so far
As I’ve been thinking about the day of surgery, I’ve realized that I left out a few little details, none are life-changing, but in the interest of documenting everything, I’m sharing them here.
1) I was totally remiss in not giving a huge shout-out to the hubs. He was the perfect person to have around after the surgery. He was so patient with my constant falling asleep, he was great at feeding me and most impressively, he managed to get my t-shirt on over my head without jostling me or making me dizzy. Hooray for an amazing hubs!
2) Right before going back to the operating room, when the nurse came in to let me know she was going to give me fluids, she also said she’d be giving me some medicine. My ears perked up and I, of course, asked what the medicine was. She said it was Versed, which would help reduce anxiety and would also cause amnesia. I must’ve given her a look like she was out of her mind, because she said, “But you don’t have to have it if you don’t want. I mean, you seem pretty relaxed.” I definitely declined the medication, mostly because I didn’t want to be given anything that was going to mess with my memory. No thanks! After the surgery, Nurse Ratched claimed that I had been given the medication during the surgery, but I don’t really believe her!
3) And speaking of Nurse Ratched . . . . . Sue, the nice nurse, had come back from break and was working on removing my IV. Nurse Ratched poked her head in, noted that Sue was back and said, “Well, it was nice meeting you and working with you.” I just looked at her and heard my mom’s voice in my head “If you don’t have anything nice to say, don’t say anything at all.” So, I just looked at her =)
4) I talked with my friend Gina at church today. DH told her how much I appreciated her being there at the beginning of the surgery process.
Me: I got in the operating room and just freaked out.
Gina: Yeah, I could tell.
Me: Were my eyes as big as saucers?
Gina: Yeah, and then you closed them really tightly and I thought “Uh-oh”.
So apparently she could tell I was panicking. But, another factor was also in play. She was scheduled to be on another surgery, but that patient wasn’t ready. Since she knew me, she decided to tag along for awhile. Almost as soon as the anesthesia had knocked me out, she got the call that her patient was ready. Her window of availability was perfectly aligned with my need. That, my friends, is what I call Divine Intervention!
5) Before the surgery, I had been told that they would put a bra on me after the surgery. I kinda wondered how in the world they would get a snug-fitting sports bra on me without my cooperation, but I figured I’d wait and see. It ended up not being a sports bra. Rather, it was this velcro tube top thing. It was a VERY snug fit and the velcro was super industrial strength.
Notice that the velcro is right next to where the surgery took place. I have no idea why they put it on that way. DH and I had to do some crazy tricks to get the velcro off without accidentally whacking the incision!
And now for an update. The healing seems to be going pretty well. I have alot of bruising, and some of the bruises are enormous while others are a very dark magenta color. I’d show you a picture if it weren’t on my boob. I don’t really mind sharing a nipple-free picture, but I know many of your would be weirded out, so I’ll refrain from sharing The gurgling and sloshing is still a source of amusement to me. Not only do I get a gurgling sound (like what you’d hear in your stomach), there’s also a fizzy-type feeling (kinda like opening a liter of soda). The other weird thing is that I have no sensation in certain sections. At first I thought the numbness just needed to wear off, but it’s been four days, so this might be the new normal. It’s not the end of the world, just weird.
Finally, I”m looking forward to being allowed to exercise again. I’m up 8 pounds since the surgery, which was four days ago. That’s not good! Not being able to fit into my pants is not the way I like to begin my Sabbath mornings! Tuesday can’t come fast enough. That’s when I’ll hopefully be allowed to go back to normal exercise and more importantly, we’ll find out the final pathology.
Until then . . . . . .
Surgery day – Part 2 February 14, 2014Posted by Judy in Musings.
Tags: breast cancer, lumpectomy, recovery, surgery
1 comment so far
One day surgery is for the birds. Seriously. I get that it’s less expensive to do a one day surgery, but let’s be realistic here. Sometimes you need just a little extra time to recover and to be able to get up out of the bed and to your car. I mean, really, would it have killed them to give me a few more hours? But I’m getting ahead of myself.
Let’s see, where were we? Oh yes, bored and waiting. At around 11:30, the nurse came in and said she wanted to get me started on some IV fluids prior to the surgery. She hooked up the IV bag to my hep lock and discovered that the fluid wasn’t going in. “I’m going to have to flush it.” I had an idea what this meant, but didn’t really have a good handle on the implications. She came back with a syringe which she attached to one of the ports on the line. She sucked up about 5-10 ml of fluid, and then pushed it back into the line. Seems simple enough, right? Well, imagine a giant bolus of fluid being shoved forcefully into your vein through a tiny hole. Nope, not comfortable at all!
“Ouch!” No comment at all from the nurse. I didn’t get any warning, “This could hurt a bit.”, nor did I get an apology. “Oooh, sorry, I should have warned you.” I kinda wanted to smack her upside the head to see how she liked that, but thought that wouldn’t win me any points. So I just gave her a dirty look and let it be.
Several minutes later the anesthesiologist rushed in, sat down and started filling out some paperwork, gave a brief explanation of the anesthesia, and then said, “You don’t have any medical issues, do you?” Okay, let’s just stop for a moment. Has NOONE read my chart? Good grief! I’M ALLERGIC TO LIDOCAINE. IT MAKES MY THROAT SWELL UP. Seriously. Why is this not front and center in my chart and why do I have to tell this to every. single. healthcare professional. I encounter? So annoying! Anyway, I told him about my allergy and of course, he was surprised. (Insert giant eyeroll.) He then mentioned something about intubation. This is when I realized once and for all that in healthcare, you HAVE to advocate for yourself every step of the way. The fact that I’d already talked to the surgeon, the surgeon’s nurse, the pre-op people and another anesthesiologist about NOT being intubated definitely didn’t mean that the message got to the man on the ground. I had to politely request that they use an LMA instead of intubation. The doctor seemed totally shocked that I was asking. The look he gave me was like, “How in the world do you know about LMA’s?” He asked why I felt I needed one.
Me: Well, my vocal cords pay the bills, so I have a vested interest in keeping them unharmed.
Doc: Oh, I see. (He said the same thing the other anesthesiologist had said.) I can’t guarantee that we can use it. Blah Blah Blah.
Fine, whatever, just don’t screw up my cords! He then handed me a consent form to sign. Again, I surprised him by flipping it over and actually reading the form. I’m guessing that most people don’t bother to read or ask questions, and he kinda seemed annoyed at having to explain things to me. Sorry dude, I’m gonna make you earn your pay!
I signed the form and he rushed out. A few minutes later, the nurse came back in followed by another nurse who introduced herself as Margo who would be getting me ready for surgery. She wanted me to get in the bed. Up until now, Rick had been laying in the bed and I’d been sitting in the chair . . . .it was just more comfortable for both of us that way. I asked if I could hop in the bed at the last minute since the bed made my back hurt. Margo seemed a little surprised and unsettled, but she agreed. (Are you seeing a theme here? Apparently, I’m a surprising patient! hahaha) She asked if I had any questions, and of course, I did.
“What happens if a person has to pee during the surgery? Or do people not feel the need to pee while under anesthesia?” Yep, that’s me, asking the ever-important questions! =) Margo said that sometimes patients pee on themselves, but they have chucks and other pads underneath to deal with that. For longer surgeries, they will use a catheter. Since my surgery was less than 3 hours, I didn’t need a catheter (AKA infection waiting to happen). At this point, the one day surgery nurse piped up and asked if I need to use the bathroom. After alot of waffling, we decided I might as well go since I wasn’t yet laying in bed. As I was leaving the room, I passed a lady that looked awfully familiar. When I came back, I realized that it was Gina, who attends my church and who teaches my middletons Sabbath School class. I asked if she was on my case . . .sadly, she wasn’t. But she hung around to help wheel me to the surgery room.
So I got in bed, gave the hubs a hug, and we were off! I chit-chatted with Margo and Gina as we moved to the surgical area. Margo opened a door and then, there it was: the operating room.
Time suddenly stopped.
My hearing suddenly failed me.
I looked around at the instruments, the giant lights over the operating table, the brightness of the lights, the sterility of the room and it hit me.
I wanted to reach out and grab Gina’s arm so that she wouldn’t leave me. Either I had a panicked look on my face or it was Divine Providence, or maybe both. In any case, a few seconds after panic hit, Gina said, “Would you like me to stay with you until you are under?” “Yes, that would be lovely!”
And then, the panic disappeared.
She leaned in and said, “If I had to choose any nurse, Margo would be it.” I don’t know if she was just saying that to make me feel better, or if it was true. I guess it didn’t really matter since it had the effect of making me feel better.
They wheeled me next to the operating table and it was my turn to be surprised. The table was SO NARROW! Maybe 2 feet wide, at the most. I asked Gina what happened with patients that were, uh, large. She said they “get held in more.” I had no idea what that meant until a few minutes later. I scooted over onto the table which was not at all hard like I had imagined. It was soft and cushy, kinda like memory foam. It was nice. I laid down with my head in a donut type thing, and then Gina strapped a belt over my legs to keep me from rolling off. And then, I understood her “held in” comment. The bigger you are, the more the belt holds you in/on the bed. I can’t imagine that would be comfortable!
Anyway, I laid down, got strapped in, then Gina and Margo put compression stockings on my legs. They actually felt really nice, like little massages for my calves. The purpose is to keep the blood moving during surgery so that you don’t end up with DVT, deep vein thrombosis, a blood clot in the legs. While they were working on that, Jenny, the nurse anesthetist was getting me ready to be knocked out. At least I’m assuming she was a nurse anesthetist. If she was a doctor, I’m sure she would have said, “Hi, I’m Dr. S and I’ll be getting you ready for anesthesia.” I found it interesting that a)I wasn’t dealing with the doctor that had just talked to me 15 minutes before and b)I was dealing with a nurse anesthetist. If you’ll recall, my surgeon had said that some of the nurse anesthetists were okay while others weren’t. I’m going to make the assumption that he was okay with Jenny. I have to believe that is true because if it isn’t, then he was just lying to me when he said he would request a doctor to be on my case if he saw that a nurse was assigned. I have to believe he was telling the truth, otherwise, how could I trust him on all of the other more important things?
The other thing that was interesting was the difference in how the nurses handled my body. Gina and Margo were pretty gentle when moving my legs and covering me up, etc. Jenny, on the other hand, not so much. I kinda felt like I was a slab of meat that she was flopping around, not exactly the most gentle treatment I’d received. I got this thought about 2/3 of the way into my brain before the mask was put on my face and then I was knocked out. I came to several hours later and heard someone calling my name very loudly saying something about, “You’re going to rip out your IV!” I felt a firm hand pushing my arm down. I opened my eyes and saw a female nurse standing on my left and a male healthcare tech standing at the foot of the bed. I must’ve fallen back asleep at that point because the next thing I remember I was back in one day surgery and I saw DH coming into the room. I asked what time it was: 4:15. Whoa! Four hours of my life disappeared just like that, and I didn’t even notice! Kind of creepy, actually.
DH informed me that the surgery had gone well and they had removed 3 lymph nodes. Two were sentinel nodes, and the third was a smaller node that was suspicious. We won’t know anything for sure until my follow-up appointment with the surgeon on Tuesday. That’s when we’ll find out the exact size and pathology of the tumors and whether or not the nodes are cancerous. All of this waiting around for results is killing me! Fortunately this time, I’ve spent much of the time sleeping and relaxing, so it’s been a less stressful and seemingly shorter wait.
But back to my recovery. Ah, the recovery. What a disaster! Morphine is some hard-core stuff! Apparently it made me kinda wild in recovery. Oops! It also made me extremely sleepy, weak and dizzy. I got back to one day surgery at about 4ish. The nurse, Sue, came in and gave me some pain medicine and the tech brought me some cranberry juice and applesauce, even though I’d requested pudding. (He later corrected his error and brought the pudding.) DH fed me the pudding, helped me with the juice, and then ate my applesauce. About 5ish, another nurse came in since Sue was on break. It became pretty clear that her name was nurse Ratched. “Okay, we are going to get you up with your legs dangling along the bed, get you to take some deep breaths, get that IV out and get you out of here!” Uh, she clearly had no idea how terrible I was feeling. Whenever I opened my eyes, the world was just pulsating and I couldn’t focus on anything. My arms and legs felt like lead and I didn’t have a single iota of strength. I didn’t see how sitting up and dangling my legs was going to be at all possible.
Nurse Ratched comes next to me, puts the railing down and tells me to sit up so I could dangle and take deep breaths. “Can’t I just take my deep breaths in this position?” I frankly don’t remember what she said, but I was thinking, “Give me a break! I’m a professional singer. I can get a good, deep breath in pretty much any position. I DON’T need to have my legs dangling!” I’m sure she said something argumentative and I calmly but firmly said that I wasn’t ready. She grabbed my covers, pulled them off of me and ordered me to sit up. With my eyes closed, I petulantly and firmly grabbed the blankets, yanked them back up and said, “I’M. NOT. READY!” and set my jaw. She wisely gave up and walked out.
Nurse Ratchet: 0
I heard her saying to the tech, “Go in there in 5 minutes to remove her IV.” Five minutes later the tech came in and said, “Are you ready to try and sit up?” He was so calming and gentle, such a difference from crazy nurse Ratched! I thanked him for “. . being so gentle and quiet. The previous person was just awful!” DH helped me sit up and my hand flew to my mouth as I was sure I was about to upchuck. (I’m telling you, morphine is some evil stuff! I think the sweet pudding didn’t help matters any, either.) The tech went to inform the nurse of my nausea and she came in and gave me some zofran. At this point, they must’ve realized that I wasn’t going anywhere fast, so they just sort of left us alone. At least that’s how I remember it. DH was helping me get dressed, but it took a VERY. LONG. TIME. I couldn’t stay awake to save my life. I felt like an elderly person with narcolepsy! At one point, I asked for a drink. DH put the straw in my mouth, and then after a bit, I realized that I had fallen asleep with the straw in my mouth and I hadn’t even taken a drink. So hilariously pathetic!
I eventually managed to be clothed, Sue, the nice nurse, came in and removed my IV, and we were ready to go home. Oh, at some point, nurse Ratched came in and gave discharge instructions to DH, which I only sort of heard and definitely didn’t internalize. DH helped me up to sit in a chair while he went off to get the car and the nurse called for transport to take me to the front entrance of the hospital. I found it interesting that they left me sitting in the chair unattended. I totally fell asleep in the chair and noticed my mouth was hanging wide open when the transporter arrived. I could easily have fallen out of the chair. I’m not sure why they didn’t let me stay in the bed. Furthermore, I have no idea what the rush was to get me out. I arrived at one day surgery at 4 and I was heading home shortly after 6pm. Would it have killed them to let me rest a bit and get me home at say 9 or 10pm? I mean, that’s still the same day, right? So as I said, one day surgery is totally for the birds!
The transporter was probably the best one I had all day. He went over all of the bumps VERY slowly and there were no herky jerky movements. I should have taken note of his name to send him a commendation. Oh well. So DH drove me home since I clearly was in no shape to be doing much of anything. My pain was really no biggie, I was just soooo out of it! When I walked into the house, the babes were all lined up, freshly showered with their jammies on. So darn cute! I gave them quick hugs, got in bed, took some medicine, drank some water and then zonked out until about 1am, when I woke up and realized I was hungry and needed some more pain meds. I felt leagues better, though. The world was no longer pulsating, I didn’t feel impossibly weak or dead tired.
The two days since the surgery have been filled with many hours of sleep. It’s been nice. I’m having to force myself to just take it easy and to allow people to do things for me. I really feel mostly fine, just a little tired. I’m so used to going through my day feeling tired that this is normal for me. But, I know I need to rest, so I just disappear into my room to rest throughout the day. I’m no longer taking pain meds, which is great. I’m hoping that by tomorrow I won’t feel as tired and my head won’t feel as weird. But if it does, that’s okay, I’ll just keep on taking it easy.
And on a final note. No amount of talking can prepare you for gurgling boobs. No, really. I knew that there would be liquid filling in the gaps, and I knew there might be sloshing. I wasn’t, however, prepared for it to sound like a gurgling stomach! It’s hilarious and weird all at once! Apparently, there is never a dull moment with breast cancer!
Surgery day – Part 1 February 13, 2014Posted by Judy in Musings.
Tags: breast cancer, healthcare, mammogram, surgery
My day started out at 5:10 when my alarm went off and I dragged myself to the shower, an important step that I couldn’t miss given that I wouldn’t be able to shower for 48 hours. Hubs and I bundled up and headed into the very cold, -10 degree morning. We walked into the one-day surgery center at 6am and I was quite surprised to see a full waiting room. Apparently one day surgery is a hoppin’ place! They took DH’s cell number just in case they needed to get a hold of him, and then gave him a number that corresponded to my case. They had this big computer monitor in the corner, kinda like what you see in an airport, listing all of the different case numbers which were color-coded with where they were in the surgery process (surgery prep, surgery, recovery, etc.)
At about 6:30 I was called back to get vitals taken and to change into my lovely hospital gown. Those things are horrid and fit no-one! I eventually had to tie a double knot because the crazy gown kept coming undone. They gave me a flu shot and placed a hep lock in my arm, then they let DH come on back. We then experienced the first communication breakdown. The nurse said that the people from the Mills Breast Center would be coming to get me for the wire placement at around 7:30. That time came and went, and no-one showed up. Come to find out, the one day surgery people were supposed to take me over. Whoops! Then to top it all off, the transporter didn’t really know where she was supposed to take me. Maybe I was their first breast surgery patient ever. Or, maybe they were just having an off day. In any case, we eventually made it over to the breast center. DH was going to go home to eat breakfast, but he decided to hang out and get a snack at the coffee shop instead.
In the meantime, I was taken back to one of the mammogram rooms. Initally, I was under the impression that the radiologist would be placing the wires using ultrasound guidance. I was wrong. They would be using mammography to guide them. It was definitely one of the strangest things I’ve experienced. I recognized the nurse from one of the previous mammograms and she informed me that Dr. X would be placing the wires. My heart immediately sank as this was the original radiologist that had been so cold and robotic when this whole “you have a mass” process started. I was pleasantly surprised when she came in, though. She was like a totally different person, great to work with, kind and compassionate. She even patted me on the arm firmly as she was leaving and said in the sincerest of manners, “Best of luck to you.” In retrospect, I’m glad it was her doing the procedure and not the other radiologist, who was a male. While I’m sure he would have been just fine,me and my cancerous boob were placed in such strange positions, it just would have been awkward to have a male doing the procedure.
So back to the procedure. I was seated in a tall, padded, wheeled chair. They wheeled me up to the mammogram machine and squished me in there. It wasn’t nearly as bad as the diagnostic mammo, but it was still awkward. They have to be able to get enough of the breast into the machine to see what they are doing, but they can’t have any of the chest muscles in the way. In addition, your arms and head have to be out of the way too, so sometimes I was in a completely unnatural and uncomfortable position. Once they found the proper squishage and took a few pictures, they then located the wire clips that had been placed during the biopsy in December. The next task was to find the exact place where the wires would be inserted. I’m just guessing at the specifics of this next part since I couldn’t really move to see what they were doing. They had a grid that was placed over the breast to help them pinpoint the location. The doctor would call out, “Okay, place it at C-12.” The nurse would then move what she called the “crosshairs” to that location. I’m guessing maybe there was a laser light or something that then showed the radiologist where to insert the needle. Again, this is strictly a guess. Anyway, so she inserted two needles, they took another picture, then I was released. Yes, I was in a squished and awkward position while the needles were being inserted. I’m telling you, it was very weird!
The mammogram machine was rotated and they set it up to take a pic from another angle. More awkward squishage ensued. At this point, they inserted the wires. One was about 5cm long and the other was 9cm long, the latter went into the tumor at 3 o’clock position since it was further away from the surface of the skin. The wires were very skinny and quite floppy, not stiff at all. I didn’t feel anything while they were being inserted (the radiologist gave me a numbing injection), but afterwards, while I was waiting for the surgery, I did have pain from one of the wires. It was like I could feel it just under the skin. I didn’t want to move it, though, for fear of messing up the careful placement.
Once the wires were placed, they wheeled me away from the machine and laid the chair back to give me the injections for the radioactive tracer that would be used in the sentinel node biopsy. (Quick refresher: the tracer is injected just behind the areolar area and it then gets sucked up by the lymph system. During surgery, they use a geiger counter to find the lymph node/s that are the most radioactive.) Generally, they numb the skin with lidocaine. Lidocaine makes my throat swell up, so I couldn’t have any numbing. The surgeon initally said that maybe he would just skip the radioactive and use only the blue dye. I assured him that after having four natural childbirths, I could probably handle a few injections. Also, my BFF who’d had this procedure done back in December had it done without numbing and said it hurt, but only for like 30 seconds, so I felt pretty confident that I could manage. Still, I asked for a squeeze ball, just in case. The injections turned out to be no big deal at all. I didn’t even feel the fourth shot! Honestly, having the hep lock inserted was much more painful. Another nurse who was training was present during the procedure. As I was leaving she said, “Now I’m going to think that all patients should be as calm and as easy as you!” Ha! I guess I was a good patient=)
So that whole process took a little over an hour. They wheeled me back to the one day surgery area at about 9:30, and I thought DH would be coming back in a few minutes. An hour later, when he still hadn’t shown up, I hailed the nurse and asked if I could use a phone, “I have no idea where my husband is.” And here is communication breakdown number two: he was in the waiting room and had been the whole time. They were supposed to notify him when I returned from the Mills Center. Clearly, that hadn’t happened. Alas! All’s well that ends well, though. He came on back, we chit-chatted, he took a nap, I played on FB and we both were VERY bored for the next hour and a half, just waiting. waiting. waiting.
Stay tuned for the second half of surgery day!
Pensive anticipation February 11, 2014Posted by Judy in Musings.
Tags: breast cancer, healthcare, surgery
I’m a planner and a thinker. I am forever thinking ahead to what is next and imagining, in detail, how it’s all going to work out. What’s this delivery going to be like? How is this road trip going to pan out? What am I going to say when I call the pediatrician? Most of the time, it doesn’t work out the way I imagine it, but that hasn’t stopped me from continuing the imagination game. When thinking about the upcoming surgery, I was pretty sure that I would be in full on freak out mode by now. I even had a partial blog post composed in my head about the freak out. Given that most of my imaginations don’t come to fruition, I shouldn’t be surprised that this time was no different.
But I am surprised. I mean, why wouldn’t I be freaking out.
It’s a big deal. Sure, it’s a lumpectomy rather than a mastectomy, but it’s still a big deal.
Instead of being in freak out mode, I’ve been very pensive, almost brooding. I’ve been completely lost in thought for the past few days and I’ve come to the realization that I’m not actually looking forward to the surgery. You would think that I WOULD be looking forward to the surgery as that would mean that something was finally being done about the cancer. But that’s exactly the problem: something is being done about the cancer. Up until now, I could easily pretend that nothing was wrong. Even though there was a flurry of doctor’s appointments, cancer was only the focus during the appointment. Once I left the cancer center, I could effortlessly push cancer under the rug and behave as though life was normal. In fact, the past three weeks since the setting of the surgery date HAVE been quite normal. We’ve gone on playdates, gone to church, done regular grocery shopping and I’ve used my new workout gym. For all intents and purposes, everything was honky dory.
The surgery is a reminder that everything, in fact, is not honky dory. Rather than denoting the ending of this journey, it signifies the beginning.
It will be the beginning of paranoia. What is this pain? Why do I have a headache? What are these marks on my skin?
It will be the beginning of constant monitoring and testing.
It will be the beginning of the uncertainty.
This, is the beginning of the rest of my life.
You may say, “But everyone has uncertainty in their life.” True. Most uncertainly is easy to ignore given it’s ambiguity. Prior to December, I knew uncertainty was there, but I didn’t have to think about it. Now that my uncertainty has been stripped of it’s ambiguity, now that it has a name, there is no chance of snubbing it. I have to face it head on and come to terms with it. I have to come to terms with the fact that there are no guarantees. The apparent early stage of the cancer doesn’t mean that it can’t or won’t come back in a metastatic form. The fact that there is likely no lymph involvement doesn’t mean that I won’t have to endure chemo. The only guarantee is that I have to have radiation. While it doesn’t bring on the same horror as chemo, it’s no walk in the park.
So I’ve spent the past few days contemplating the uncertainty and the lack of guarantees, and acknowledging that my paradigm of what constitutes normal has shifted. The most important realization, however, has been that shifted paradigms are only an issue if you don’t have a solid rock on which to cling. I have faith in the great God of the universe and in His healing powers. I believe in His promise that “anything we ask for in prayer, believing that we’ll receive it, will be ours.” (Mark 11:24) It is by this faith that I’ll hold on as my paradigm shifts wildly about. This faith will help me adjust to the new normal. This faith will hold me up and sustain me.
And so it goes, the beginning of the rest of my life.
It’s all in your head February 8, 2014Posted by Judy in Musings.
Tags: breast cancer, nervous, performance, sickness, singing, surgery
1 comment so far
When I was in college, I started doing alot more singing in public. Choir concerts, recitals, solos in choir concerts, church . . . you name it, I was there. Along with the singing came a problem, I always seemed to get attacked by a throat frog in the fews hours prior to a performance. Invariably, I’d start freaking out, drinking water practically by the gallon, and then, the performance would go off without a hitch. It happened so much that my partner in musical crime, aka my BFF, started telling me “It’s all in your head! You aren’t really sick! You just “think” you have a cold, but you are fine.” In fact, 10 years later, when I was getting ready to sing for her wedding, she asked how I was. “Well, I’m getting a cold, so I think we’ll change the key.” She just cracked up laughing . . .”Yeah, the ‘cold’. Riiiiight. You’ll be fine!”
Imagine my surprise, when while reading an assignment for Vocal Pedagogy, I cam across “psychogenic hoarseness”. I turned to my classmate and said jokingly, “This must be my issue!”
From Meribeth Bunch’s book, “Dynamics of the Singing Voice, p 130.
Sometimes hystercial hoarseness may present itself when a singer is under great stress. . . . . Very occasionally the singer may become so frightened that acute hoarseness will appear on the day before or the day of a performance. . . . . when the singer can cough or clear his throat with a clear sound, the problem is unlikely to be an organic one.
I was mostly kidding about this being my issue, since performance anxiety doesn’t usually attack me until minutes before a performance and not hours or days. But, it was entertaining pretending that we’d found a reason for my neurotic behavior =)
It would seem that performance anxiety isn’t only limited to singing. Apparently, it extends to surgeries, as well. About a week ago, I came down with a cold. An actual, honest to goodness cold. The timing couldn’t have been worse since the hubs was about to go out of town for four days. (READ: more exhaustion all around for me as I’d be dealing with the little humans on my own 24-7). Around day four of the cold, which was Monday, I got a killer toothache whose pain then extended into the bones of my face. Not fun! Not only did it hurt to chew, my facial bones ached and I could hardly open my jaw. I called the dentist, but wasn’t able to get an appointment until the following Monday, which would be the day before my surgery. Were it any other week, I’d probably just have toughed it out. It didn’t, however, seem very prudent to wait until the day before surgery to see what was up with my tooth and the bone pain.
I made the decision to go to convenient care. This decision wasn’t made lightly. Going to convenient care wasn’t exactly going to be convenient. We’d just gotten 6-8 inches of snow, which meant that I would need to shovel the driveway and clean off the truck. Additionally, I’d have to somehow keep the little humans entertained. Fortunately, it wasn’t too cold. (You know it’s been a real winter when 20 degrees seems not too cold!) We spent half an hour bundling everyone up and then headed outside. They played in the snow while I shoveled and cleaned off the car. Saying it that way is misleading, making it seem that it was easy. In reality, my facial bones were killing me, I was feeling wiped out, and I had an extra 25 pounds (aka, The Little Boss) on my back. It took me an hour to get everything cleared away. Usually, I can shovel the walkway and driveway in half an hour. I was moving S-L-O-W-L-Y!
Anyway, I dropped the babes off with a friend and showed up at convenient care. I regaled the doctor with my tale of the ache, the surgery, blah blah. She confirmed that I didn’t have an ear infection nor did I appear to have a tooth infection. But, since the surgery was so close, she decided to do a 5 day antibiotic just in case it was bacterial. There was a very small chance of this, but I think she gave me the meds to make me feel like something was being done. As we chatted more, we discovered that she was the doctor that was to do my pre-op physical on Friday. Funny coincidence, right? She informed me that the surgery likely wouldn’t happen if my nose was still all stuffed up since that could make it more difficult to wake up from the anesthesia. She wished me luck and sent me on my way.
I spent the next day and a half all worried that the surgery would have to be postponed because of my silly cold/toothache/whatever I had going on. Heck, even the doctor said she was worried about me! Merrily, she was pleased with the improvement when I saw her for my pre-op physical today, so the surgery is still on for Tuesday! Phew! So in this case, as with singing, it would seem that the “performance anxiety” and freaking out was all for naught.
Having said that, I still am having a bit of performance anxiety. I keep thinking that the geneticist will call and say, “I’m sorry, the lab made a mistake. You actually DO have a genetic mutation.” Or maybe when the radiologist is going to place the wires the morning of the surgery, he’ll find another tumor. Or maybe I’ll be in the 5% of people whose tumors do not have negative margins, thus requiring another surgery. Or any other number of things that I can concoct in my brain. Blech! Maybe the nice anesthesiologist, who I consulted with this week regarding medicinal allergies and vocal cord preservation, would be willing to knock me out from now until after the surgery on Tuesday. That way, I wouldn’t have to worry anymore. That seems reasonable, doesn’t it? *crickets*
No, you’re right, totally unreasonable. *sigh* I’ll just busy myself reading and sleeping and baking and whatever else I can think of to do between now and then! =)