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The Cocktail Bar April 16, 2014

Posted by Judy in Musings.
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A middle-aged woman and her companion walk up to the building, the bright neon sign flashing “Cocktail Bar”. She feels a little out of her comfort zone. The last time she set foot in a bar was when she was in grad school, 10 years in the past. She timidly places her hand on the door handle, takes a deep breath, and walks in. The bar is surprisingly full, people crowded around tables, some with food, others with drinks, and still others wrapped up in blankets. The one common denominator, the far away look in all of their eyes.

The young woman walks up to the bar tender and says, “Uh, I guess I need a cocktail. I’m not sure which cocktail would be the best for me, though.”

”Well, tell me a bit about yourself and I can find the best one for you.”

“I, uh, I have breast cancer, of the pleomorphic lobular version, despite nursing four children for over 12 months each. The cancer has spread to at least 2 lymph nodes. I think my Oncotype score was about 18, but I don’t really remember. Um, I’ve had a bilateral mastectomy but did not have further lymph node dissection, opting instead to have radiation to the axillary region. I guess that about sums it up.”

“In that case, I think you should have the ACT cocktail. You’ll get four cycles of AC, Adryamycin and Cytoxan, with each cycle being delivered every two weeks. After that, you’ll get twelve weekly cycles of T, Taxol. Why don’t you step on over here and I’ll have you talk with my assistant bar tender to get you all of the details.”

As the young woman is following the bar tender, another person rushes into the bar frantically waving a piece of paper shouting, “Wait! Wait! Don’t start anything yet! I have new information!”

He hands the slip of paper to the bar tender, who reads it and then wrinkles up his nose. “Hmmm, this changes things. Ma’am, were you aware that you have an issue with your heart?”

The woman nods.

“Your left ventricle is not squeezing quite hard enough. Now it’s possible that the issue could be an artifact from pregnancy, but I’d rather not take any chances. Adryamycin and Taxol both are what we call cardiotoxic drugs. Since you are already starting with a slightly decreased heart capacity, I’m going to give you a different cocktail that will not put you at risk for further heart damage. This will be called CT: cytoxan and taxotere. You’ll get this every three weeks for four cycles. If you are tolerating it well, then we’ll push on to 6 cycles so that we can treat the disease as aggressively as possible.”

“Okay, that sounds reasonable. So do I still need to meet with the assistant bar tender to get more specifics?”

“Yes. She will be going over the side-effects of the cocktail and give you some tips on how to manage it all. Do you have any other questions?”

”No, not right now, thanks.”

“Alright, then. I just want to add that you will be losing your hair. Probably around week 3, you’ll feel your scalp getting tight and then your hair will start falling out. It will grow back after the treatment is ended, but you’ll definitely be losing your hair.”

“Okay, I’m prepared for that, thank you.”

The young woman meets with the assistant bar tender in a private room, where she is informed of all of the various side effects of the cocktail and is given a handy chart to help her keep it all straight in her mind.

Symptom Management
Alopecia (hair loss) Wear a wig or a scarf
Fatigue Take frequent naps, but don’t be a couch potato
Nail discoloration and changes  
Appetite changes Eat 5-6 small meals a day, don’t use hunger as a cue for when to eat
Nausea Take the medication and stay ahead of the nausea
Constipation Call the office as soon as you notice changes.  Don’t wait until you’ve gone 5 days without a bowel movement.
Drink lots of fluids.  Add greens to your diet as well as prunes, flax seed and apple juice.
Metallic taste Use plastic silverware
Dehydration Drink at least 64 ounces of water per day.  Stay hydrated!
Decreased white blood cells Neulasta injection.  Stay away from large crowds, wear a mask if you will be around sick people.

“The day after your cocktail, you’ll need to come in to get a Neulasta injection. This will create more bone marrow, which is where the white blood cells are housed. The injection itself isn’t too painful, but you will likely experience bone pain as a result of the new bone marrow being created.”

“Great! One more thing to have to deal with!”

“I know. I’m sorry!” The assistant bar tender places her hand on the young woman’s hand and gives it a squeeze. “You can take Claritin and Tylenol to help mitigate the bone pain.”

“So basically, I’m going to become a druggie. I’ll be alternating Compazine and Zofran every four hours for the nausea. For two days after the cocktail, I’ll be taking Decadron, also for nausea. For constipation, I’ll be taking Miralax and Senecot. For bone pain I’ll be taking Claritin and Tylenol. And this is in addition to the iron pills I have to take post-surgery. How in the world do I keep this all straight?” The young woman’s brain was starting to swim with all of the information that was being given her.

“I would recommend keeping a log of when you have taken each drug and what time you are supposed to take each drug. The most important ones are going to be the anti-nausea medications. You really want to stay ahead of the nausea. Once you get very nauseated, it’s very hard to manage, and then you run the risk of dehydration and malnourishment. So you really, really want to stay on top of the nausea.”

The young woman lets out a huge sigh. “Okay, I’ll see what I can do about that. Anything else I need to know?”

“Nothing comes to mind. Let’s go find the bar tender and make sure we haven’t missed anything.”

The two women go in search of the bar tender, who is just finishing up with another patron.

“So if  I understand correctly, you are wanting to get started today?”, he says.

“Uh, well, um, ah, er, I guess.” The young woman looks at her companion, who had been quietly following her around and had been taking mental notes of all of the information. His eyes were as big as saucers at the thought of beginning immediately, but he shrugs his shoulders and says, “Sure, go for it.”

And so she does.

They find her a private room for her first infusion. The bed is horribly uncomfortable, so the young woman opts to sit in the chairs. The nurse comes in and accesses her port, which is a sterile process. She puts gloves on, making sure to only touch the port accessing items once the gloves were on. The port site is cleaned with some anticeptic for 30 seconds and then the access needle is inserted. The young woman is overjoyed to discover that this is a practically pain free process. No fishing around to try and get an IV started!

Ah, finally! she thinks, Something positive in my day!

The nurse then hooks her up with a liter of saline fluid to make sure the young woman is well hydrated. After that, the first drug is set up to run for an hour. The young woman is given specific instructions to call the nurse if anything feels different. (Itchy, tired, sudden nausea, etc.) The first drug is administered without any problems and the second drug is set for an hour along with a half liter of saline fluid.

Four hours after getting started, the young woman is finished and gets ready to head home. It has been a busy day for her and she is tired, but happy that she is feeling so good. So far, the cocktail hasn’t produced any of the dreaded side effects. She knows this likely won’t last, but for now, she’ll take the good feeling.

Tomorrow will be another day.

With that, the young woman and her companion step out of the cocktail bar into the beautiful, sunny day.

The haircut April 11, 2014

Posted by Judy in Musings.
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From the moment I knew that I would need chemo, I made the decision to cut my hair off at the beginning of treatment, long before the chemo had a chance to make me bald. I figured I would donate the hair to my favorite agency: Children With Hairloss. (And no, the irony of that is not lost on me!)

Today was the day for that haircut. In order to get the most hair, I sectioned my hair into ten little sections and braided each one. Then, DH did the honors of chopping off each of the braids.
getting the haircut

post haircut hair

I ended up with a somewhat disastrous look,

so I immediately called the hair salon close to my house, explained the situation, and made an appointment for an hour later to get an an “evening out” hair cut.

When I walked into the salon, I felt totally out of place. I was easily half the age of all of the patrons and I thought, “Hmmm . . .I’m not sure they’ll know how to deal with my hair.” But, I kept an open mind. An older gentleman came over and asked if I was there for an “evening out” cut, and I said, “Yes.”

As we are walking back to the chair, he comments: So you are donating your hair?

For some reason, I stumbled and hemmed and hawed in the explanation and finally blurted out: Well, it’s all going to fall out anyway.

Barber: Wait? It’s all going to fall out?

Me: Yeah. I’m going through chemo therapy.

Barber: Oh, I am so sorry. I have been there myself.

And then he proceeded to share his story and offer encouragement and we spent the rest of the haircut talking cancer-stuff. He was polite enough to make sure I was cool with talking about it. Of course I said yes, since I’m a cancer story junkie these days! During the course of our conversation, he said that there would be no charge for the haircut. “You have enough to worry about. No need to add extra.” Such a lovely gesture! He also said that if I ever decide that I want to just shave it all off instead of waiting for it to fall out, he’d be happy to do that as well. He even went so far as to offer a private room so that the world wouldn’t have to watch me lose all my hair. Although that could be construed to be creepy, I thought it was another lovely gesture!

After the cut was finished, he walked me to the door, wished me luck and gave me a big hug. I walked out of there feeling 10 feet tall with the biggest smile on my face! That is not at all the experience I expected to have, but I’m so glad I went to that salon as it improved my already really great day!

So having really short hair is new for me. Heretofore, the the shortest cut I’d ever had was a chin length cut. This is soo very different. Not sure if I like it, but in the end, I think this is going to be a better place from which to go bald.

pre chemo cut

On being right April 2, 2014

Posted by Judy in Musings.
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We place a great deal of importance on being right. We want to know that we bought the right car, chose the correct mate, produced the correct March madness bracket, turned down the right street. Everyone wants to be right about something, no matter how insignificant. Being right isn’t, however, always all that it’s cracked up to be. Sometimes being right means discovering your mate chose someone else, finding out your child has an addiction, learning that you have life threatening disease. These are the times when we wish through and through that we were wrong.

These are not the times I want to talk about, though. Instead, I want to dwell on the times when being right, is superbly so. Like knowing that I’ve chosen the right life partner. Like knowing that the surgeon on my team is top notch. Like knowing that I made the right surgical decision.

My life partner, aka hubs, is someone with a good balance of hilarity and seriousness, who shares my value system and has a proven track record of digging in when everything hits the fan. We are coming up on our 10 year anniversary, and I feel so blessed and am pleased to be right about who I chose.

I’ve talked about my surgeon before and have sung his praises, but I really can’t say enough good things about him. These last two surgeries really brought that home for me. Not only is he completely candid in each and every conversation, his surgical skills and methodology are painstakingly thorough. Given the choice between quick and easy and meticulous and slow, he will choose whichever will give the patient the best result. Much of the time, that means he takes the meticulous and slow approach. In a day and age where people want things done faster and faster, there’s something to be said for those who buck the system and go against the grain for the sake of better patient outcomes. Additionally, he has gone to bat for me in terms of preserving my cords. The past two months have seen me undergo three surgeries. Each and every time, the vocal cord-saving LMA was used, much to the chagrin of the anesthesiologists. They would have much preferred to use an endotracheal tube over the LMA which is not the norm and using it puts them out of their comfort zone. The fact that the surgeon went to bat for me in that regard is not lost on me as I’m quite sure his advocacy is largely why I got my way. And so, I am pleased to know my gut was right about the surgeon.

Making the decision to have a bilateral mastectomy was not a decision I came to easily. The phrase “tortuous decision-making” comes to mind. Even though I was at peace with the eventual decision, I didn’t know that it was the right decision until the pathology report came in. The right side was perfectly clean and benign. What a relief! (While it may seem that I should be devastated rather than relieved that I had a perfectly healthy breast removed, keep the following in mind. 1) The removal was a preventative measure. 2) We didn’t know it was perfectly benign. There was a chance that something was missed on the MRI, which would then cause a whole slew of other issues.) We knew the left side was not benign. What we didn’t know was the extent of the malignancy. As it turns out, there was a good chunk of cancer left behind after the lumpectomy, much more than the surgeon expected to see. So much, in fact, that there was no way everything could have been removed while still having a good cosmetic outcome. In addition to finding more invasive plemorphic lobular carcinoma (the original diagnosis), they also found that there was LCIS (lobular carcinoma in situ – this is cancer has not busted out of the lobules, but still is a precursor to invasive carcinoma). And so, I am absolutely certain that I was right in deciding to have a bilateral mastectomy.

Many of you started following my blog when I discovered that being right isn’t always so. The journey has been riddles with disappointments, surprises and very little in the way of good news. It can be depressing to always be reading about bad news, setbacks and less-than-ideal experiences. And so today, I celebrate the good and am thankful that there still is good. Today, being right is splendidly so.

The daily grind March 28, 2014

Posted by Judy in Musings.
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It’s been a week since my surgery, I managed to bust out of the hospital on Saturday afternoon, and have been happily at home ever since. Hospitals are terrible places. Really, they are. You go there to get well, but there is nothing about hospitals that makes it easy for a person to convalesce. The interruptions are constant: vitals to be taken, drains to be emptied, urine to be measured, medication to be given, showers to be taken, visits from the doctor . . . it is endless! I’m pretty sure that I didn’t get more than 2-3 hours of sleep at any given time. It is really difficult for your body to do recovery work when you aren’t getting rest. I don’t really have a solution to the “hospitals are a terrible place” conundrum, though.

In any case, I’ve settled into a daily routine, which is quite different from the routine I followed heretofore. I generally wake up feeling totally unrested with an achy back. After a bilateral mastectomy, the only way you can sleep is on an incline or flat on your back. That’s the one way I can’t sleep thanks to my bulging disk. So I spend the whole night waking up and tossing and turning and then I wake up feeling only marginally rested. (Since starting this post, my surgeon has informed me that I can sleep on my sides. Hooray! Maybe I will start getting better sleep!)

Once up, I have to deal with the drains. Drains are a very necessary part of post-surgical recovery, but I’m pretty sure everyone thinks they are a giant nuisance! In order to avoid excess fluid buildup in the surgical cavity, a tube is placed there which then exits the body at the side, secured with a stitch, like this.

drain exit

A bulb is attached at the end of the tube and uses a vacuum seal suction thing to bring the fluid out of the body. The day of surgery, my drain outputs were crazy high, especially on the side with the hematoma. They were emptied every 4 hours, I think, and it was at least 50-60 mL each time. That has now slowed waayyyy down. When I empty the drain in the morning, I get maybe 20 mL per side.

Prior to emptying the drains, I have to strip each drain to ensure that no clots are present in the drain. This is done by firmly pinching the drain at the point where it exits your body. With the other hand, you pinch the drain and run your hand down to the bulb.

No-one told me this would be painful.

Someone should have told me this would be painful.

Each time you do this, you are recreating suction. Since the drains can be felt through my skin, it feels like it suctioning my skin. I was supposed to do this 4-5 times a day. I only do it twice a day because
a) it’s painful
b) the drains are working fine and I can see fluid moving
c) it’s painful
d) the nurse said 4-5 times per day wasn’t necessary.

After the drains are stripped and emptied, then it’s time to get ready to shower. This is a process. Generally, I have a snazzy little apron I wear at nighttime to hold the drain bulbs.

drain apron

I can’t wear that in the shower, so I wear a lanyard, and then attach the drains to the lanyard with safety pins. Then I hop in the shower and sit on my handy bath chair (yep, totally makes me feel elderly!) and then hubs helps me with my shower. (My arm mobility is improving, but I still don’t reach over my head very well and definitely can’t reach my back.) After the shower is over, I have to get a clean towel to pat dry the surgical area and the drain exit point. The drains are then detached from the lanyard and dumped back in the apron, and I carefully step into my super soft post mastectomy camisole, complete with tummy control.

Let’s take a brief detour here to discuss tummy control. I never realized the giantness of my abdominal area until after the surgery. Even the 3 year old noticed. (“Mommy! Your tummy is huge!”) I guess the boobs offset the abdomen! In the absence of said boobs, the abdomen now looks huge. So now, I think about tummy control, and I’m very thankful for post-mastectomy camisoles with tummy control! :D

Anyway, gauze is then placed around the drain exit point as a cushion. I then retrieve the bulbs from the apron and place them in smaller bags, which I then safety pin to the outside of the cami. Now I’m ready to put the compression device on. In order to keep the fluid levels down, it’s important to apply compression to the area during the waking hours. I’ve been using a belly band left over from pregnancy.

cami drain setup

Phew! Now I’m ready to get dressed. Several friends have been kind enough to loan me a slew of button up shirts to use until my arm mobility is back to normal.

Next up: my blood thinner shot: Lovenox. These are painful shots that go in your stomach twice a day. I tried to give it to myself once . . . .couldn’t do it. Thankfully, my mom has that part under control. The actual poking isn’t too bad, it’s when the medication is being injected that I wanna yell “OUCH!!” Fortunately, I’ll only have to do the shots for a total of seven days.

And now, an hour or more later, I’m ready for my day. I generally feel pretty good first thing in the morning, but my energy tanks mid-morning, at which point I veg on the couch or goof off on FB. We’ve been blessed to have people providing food for us, and they usually deliver something delicious just as my energy is tanking =)

Not much happens during the day since my energy levels are totally mercurial. According to the surgeon, it will take about 4-6 weeks to get back to normal levels! I’m so very glad to have my mom here and to have a hubby whose work has given him lots of time off!

In the evening, I have to again drain and strip the drains, get another Lovenox shot, and take my daily iron pill. I lost a lot of blood during the two surgeries, so the iron pills are an effort to boost my blood levels without having to give me a blood transfusion. Iron pills have the side effect of constipation. Lucky me, right? So right after taking my iron pill, I load up with anti-constipation aids (Miralax, prunes, flax seed, etc.)

The final action of my day is to remove the compression band, re-don the apron and then head to the couch for bed.

I’ve settled into a daily routine, but I’ll admit, it’s a bit of a grind. I guess I shouldn’t complain. By and large, I’m not feeling any pain from the surgery, so that is good. But I am complaining, cuz it’s a grind and it’s annoying. I figure I’m allowed a little bit of whining, right?

Rollercoaster ride March 22, 2014

Posted by Judy in Musings.
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Nothing is ever simple with me. I’m always the “interesting” case. After my experiences of the past two days, I’m quite ready to let someone else be the “interesting” case and to just be a plain, old, boring patient. Thankfully, it looks like I’m headed in that direction.

My roller coaster of an experience started when my alarm went off at 4:45 am on the 20th. I had to be at the hospital at 5:30 for a 7:30 am surgery. The intake nurse was quite nice and chatty, so that was a good beginning to the day. I asked her to not take my blood pressure in the left arm since I’ve had lymph nodes removed, so she gave me a limb alert bracelet, that way every other person would know that limb was off limits. Everyone has ended up taking my blood pressure in my leg, which was new and weird!

limb alert

Anyway, she felt really bad having to start an IV without using any numbing medication (allergic to Lidocaine). It could have gone really poorly for me given that my vein kept trying to roll and she was having a hard time wrangling it. But, as a testament to her skill, she managed to get the IV started without causing me mass amounts of pain. Hooray, for skillful nurses! The anesthesiologist came by around 7:30 and we discussed airway management. The pre-op doctor put a note in my chart that I was interested in an LMA, so the anesthesiologist was prepped for that discussion. Her feeling was that this surgery would be longer, so she was more worried about doing an LMA since there was an increased chance of throat secretions ending up in the lungs, and so her preference was to do the endotracheal intubation, with a smaller tube. I was comfortable with that once I knew that she understood the importance I placed on my vocal cords.

About 15 minutes later, the OR nurses came to get me and wheeled me back to the surgical suite. (Sounds luxurious, right?!) I didn’t notice much as I was being wheeled back the first time I went in for surgery (the lumpectomy), because I was busy chitchatting. This time, I noticed the smell. The instant we went into the surgical/sterile wing, the smell was very clean, almost like a bleach type smell. When we entered the actually operating room, it was FREEZING! Yikes! The nurses had warned me, but this was way more extreme than what I was expecting. Fortunately, they gave me several heated blankets and that kept me nice and toasty.

My reaction upon entering the room was MUCH calmer this time. I actually noticed everything and everyone around me. I managed to wave and flash a big smile to the resident doctor and the nurse. I said “hello” to the CRNA (certified registered nurse anesthetist), then I wanted to verify that she had the same info as the anesthesiologist. To my surprise, she said, “Yes, we’ll be using the LMA.” Uh, what?!?!? I wasn’t complaining, mind you, just pleasantly surprised. So yes, no tubes for me, and that made me VERY happy! I also mentioned that I didn’t want Morphine, as I didn’t tolerate it well during the last surgery, nor did I want Versed. She agreed to all of that, then they set me up on the super narrow surgical bed. (I still can’t get over how narrow those crazy things are!!) Next came the pain meds through the IV (fentanyl) and then the mask for oxygen which eventually was switched to a gas that put me to sleep. This time, I was determined to be aware and cognizant as long as possible. I didn’t make it that long before I just wanted to close my eyes and sleep, though!

I woke up sometime later in the recovery room and heard the nurse saying something about “set up the morphine pump.” That woke me right up.
“Excuse me, I had requested to not be given any morphine. Could we please discontinue this?”
The nurse apologized and immediately stopped the morphine and switched me to fentanyl. I then got some ice chips and then realized that I was shivering, so they gave me a bunch of blankets. I must’ve fallen back asleep, because I don’t remember being wheeled from recovery to my hospital room. Hubs met me at the room a few minutes after I arrived at around noon. He said that Dr. Ray had reported that everything had gone well. It would be 24 hours before the port could be used, but there were no surprises.

So all in all, it went fine.

“What?” you say. “That’s it? Where’s the rollercoaster?”
Here is where the storytelling gets tricky. The previous section of the story all took place and was stored in a nice, orderly fashion in my brain. The rest of the story is a jumbled mess and I’m not really clear on what happened when. So I thought it best to separate the events by category rather than trying to tell them in a chronological order. I’m sure the fogginess of my brain was directly related to the pain medication. So, let’s start there.

The bottom line is this, I should never, ever become a drug addict. I would be a terrible one: always falling asleep, throwing up, feeling totally off. Well, maybe that’s the way you are supposed to feel, but I can’t imagine why one would want to do this to themselves on purpose as it’s not a pleasant feeling for me.

In the words of the surgeon, I had a very “marked reaction” to the narcotics. Basically, it made it so that I couldn’t keep any food down. Now I have to say, throwing up is my least favorite thing to do. There are so many other unpleasant experiences I’d rather endure rather than vomiting. When you accompany that with diaphoresis (sudden and profuse sweating) and weakness, you get a miserable time. This happened to me three times between 4 and 11pm. At first I thought it was just that I had tried to eat too soon. I have been NPO since midnight, so I was hungry and ordered rice and lasagna. The rice was too dry and one bite of lasagna proved to be too much. Shortly after that, the first upchucking took place. It was so violent, I actually expected it to come out my nose at the same time. Yuck! Not fun! (Remember this part for a future story about the residents.) But, once the event had passed, I felt fine, as if nothing bad had happened. The nurse gave me a medication called Fenergan which is an anti-emitic. Within a few minutes of being given that intravenously, I was so, utterly exhausted. I took a little nap for an hour or so.

After a few hours of feeling decent, I tried food again. This time I ate some Korean dumplings DH had brought me, as well as a veggie burger and a popsicle. I figured I was safe since I didn’t feel nauseated after just one bite. DH came back from having gone home to eat and put the kids to bed. He helped me up to the bathroom and then I figured I should try to go on another walk around the floor. (I had done a half lap about an hour after arriving.) We started to go and then it started creeping up on me: the diaphoresis and the weakness and then the “oh no! I’m going to lose it!” We managed to get back to the bed where I felt horrid, was breathing super fast and wishing this feeling would just go away. And then I threw up for the second time, which was equally as violent as the first time. But again, once the event passed, I felt better. Since the first medication didn’t seem to be working, they gave me another anti-emitic called Zofran. Another hour or two passed during which time I didn’t eat any food and only drank water. I thought I was in the clear, and then the diaphoresis kicked in followed by the other symptoms. I didn’t think it was possible to have a more violent vomiting episode. I was so very wrong! I felt sorry for my roommate, having to listen to me wretch away. And really, wretch is the best word to describe it. I was gasping for air, coughing, and trying desperately to not choke on my own vomit. (Sorry, I know that’s gross!)

Up until this point, I had been using the PCA pump for pain meds. The meds are hooked up to a pump with a button that I could press every 10 minutes for pain relief. At this point, since neither of the anti-emetic medications seemed to be working, I realized that the culprit must be the pain meds. Hence, I quit using them for the rest of the night. Wouldn’t you know it, I quit throwing up. So again, the moral of the story, I’d be a terrible druggie!

Somewhere along 4:30 pm on the 20th, I happened to glance down at my dressing and chest and did a double take. I had cleavage! Does anyone else see a problem with that? Yeah, I thought that cleavage was now a thing of the past. So I took a closer look and discovered a giant lump, maybe a bit larger than a clementine, on the right side of my chest. I called the nurse and she said, “Hmmm, that doesn’t look right! Let me talk to the doctor.” A few minutes later, one of the residents came in and took a look, also proclaiming that she didn’t like the looks and she would need to talk to Dr. Ray. His opinion was that it could be a hematoma (collection of blood outside of the blood vessels) forming and he might need to do another surgery to remedy that. In the meantime, I was to apply heavy pressure to the area. To that end, the nurses applied a pressure fitting bandage so that the downward pressure would hopefully help the hematoma to resolve. They also brought me two water-filled IV bags wrapped in a towel and set that on the swollen part. And no, it did not feel good!

Dr. Ray came in to see me the next morning around 8am. His first words were, “I’m sorry you had such a crappy night!” He went on to say that this was definitely not a foreseen situation. Based on what he had seen at the end of my surgery, there were no indications that I would develop a hematoma. By this time, the swelling had gone down significantly, but he was still able to feel something there. His main concern was that the hematoma was surrounding the port and he didn’t want to risk any future complications. So back to the OR I went. It actually took about 3 hours for me to get there, but I did get taken down to the surgery center where I was actually able to get in two long naps, which is much more than I can say for being on the 7th floor, what with the hourly interruptions!

Again, I had a very accommodating CRNA who used an LMA, did not use morphine and made a note that I wanted neither morphine nor fentanyl in the recovery room. She had to use fentanyl during the surgery, it was either that or no pain control. While I have a really high pain tolerance, surgery without pain meds would be nuts. To help with the nausea, she loaded me up with Zofran and something else whose name has escaped my mind. I was also pleased to see the same nurse that was with me during the lumpectomy. The surgery was supposed to be a quick 20 minutes, but ended up being more like an hour or so. He didn’t find anything obviously causing the leak, so it took him longer to redevelop a plan and finish up the surgery. All in all, it was successful since I no longer have cleavage . . .hooray! (Who ever thought I would be cheering about that?!!)

I’m at a teaching hospital, which means that there are many med students and residents that are involved in the care of patients here. Sadly, not all of those interactions have been positive. The first resident I encountered was in the operating room, and I saw her again later the same day when she came to check on me. She was lovely, just lovely. The next two residents crossed my path the afternoon of the first surgery. Remember that first upchucking episode? Yep, that’s when they came in. I recall seeing the male and immediately thought, “Well hello, Mr. Know-it-all!” He just exuded that attitude. He stood with his hands not on his hips, but in the much more aloof BELOW the hip position, and he was wearing a fleece jacket with the name of the hospital and the local Big 10 team logo, as well as his name embroidered on the front. Apparently, he was way too cool to wear a white lab coat! (And yes, I did manage to notice all of this mid violent vomiting. Talented, I know!)

Anyhow, DH said that while I was otherwise unavailable, the two residents (there was Mr. KIA and a female resident) were moving towards me wanting to examine the surgical site. DH basically told them to go take a hike and come back later. They both left in a huff. Excuse me for puking and ruining your day! (Insert giant eye roll!) I had the misfortune of dealing with both of the residents the following day. But before that, two other residents stopped by separately during the night and early morning. They both were great, very thorough in their explanations and gentle in their approach. The whole mob of residents descended on me at about seven, and here is where the two residents from the deep reared their ugly heads again. The female came over and wanted to examine the surgical site, and was flummoxed when she saw the giant toga-like pressure bandage that the night nurses had place on me.

toga dressing

After yanking on the binder (remember that sexy thing from the lumpectomy?) and making me rather uncomfortable she says, ”Uh, we are going to have to cut this!”

“Actually, you can unravel it enough to be able to see the surgical site.”

”No, I think it’ll need to be cut, we won’t be able to see anything.”

”Well, SHE managed to do it earlier this morning” I said as I pointed to the resident that had been with me in surgery. (As an aside, why is it that so many health professionals treat you as if you have no idea! I don’t know how many times I’ve said something to assist with my care, the “professional” blows me off, then ends up doing what I suggested! So aggravating!)

So the good resident helped the other resident and it was all well and good, until Mr. KIA struck again. He leaned in and started poking and prodding away, with his bare hands. DH immediately asked if he had cleaned his hands, to which he huffily replied “I wash them in between each patient.” Well, that’s great, but how was I to know that? And how do I know you didn’t touch the wall or the bed or some other contaminated thing before shoving your hands into my surgical site? Grrr!

Suffice it to say that we didn’t have much appreciation for the residents as a whole and mentioned it to the surgeon who promptly asked us to remember the incidents and share them with him in detail at our follow up visit. In the meantime, he banned Mr. KIA from dealing with me. Funny thing is that we didn’t even say his name, but the surgeon knew right away who we were talking about! I was out for a walk around the unit after Mr. KIA had been banned and I happened to see him in the hall . . .. he seemed all awkward and walked stiffly past me. I was amused. Maybe I shouldn’t have been, but I was!

As I was finishing up this post, I had another “Holy cow, really?” experience, this time with the nurses. I noticed that my wrist was getting swollen and I’d also noticed a little blood just around my IV. This didn’t seem like a good development. The nurse came in and he determined that it was likely okay, but was going to change the dressing. During the course of that jostling, the IV was compromised, so he had to remove it and he sent in his charge nurse to insert the IV. Because of the swelling at my wrist, she had to insert the IV in the crook of my elbow. She puts her gloves on, then puts her hair in a ponytail. Now maybe this isn’t an unsafe practice, but DH didn’t appreciate it so he made some snide comment, which prompted her to change her gloves. Then she cleaned the area with alcohol, rubbed with the glove to check the vein, then proceeded to tear one part of the glove off to feel with her finger. So she’s tapping the vein with her bare finger. Now, I realize that I only made it through two semesters of nursing school, but we were taught that when you are doing anything with needles, you don’t want to touch the patient’s skin with your own skin. I didn’t think the nurse’s actions were particularly safe, but didn’t say anything. She then proceeds to insert the needle and dig around such that she blows the vein. Whoops! As she is getting ready to try again, I ask her about the “tearing the glove” bit.

Her response “The gloves are really there to protect me from the patients and their bodily fluids.”

“Okay. So then it’s not a problem for you to touch my skin with your bare hand? And if that’s no biggie, why bother with the gloves anyway?”

“Well, it helps me to better feel the vein, and if I do touch, I”ll wipe the skin again. (She actually didn’t do this last time, so my confidence in her words was low.) But I can put on new gloves if you’d like.”

“Yes, please.”

And then I got blown vein number two. There must be this rule that after two attempts, you get someone else to try, because after apologizing profusely, she went off to find someone else to try to start an IV.

As I was waiting, I decided that a) I was going to refuse the medication they were wanting to give through the IV (Pepcid, my stomach was fine, I didn’t need it anymore.) and b) I wanted to know if I really needed the fluids from the IV anyway. I was drinking lots of water and was plenty hydrated. The upshot of the matter is that I got them to call the resident on call who agreed to leave the IV out so long as I stayed hydrated.

And now, for the moral of this very long tale: You MUST advocate for yourself. Seriously, friends. Most people out there aren’t going to do it for you. You MUST speak up when you have a question or something makes you uncomfortable. Just because someone has a MD or RN on their name badge doesn’t mean that they are infallible or that they are making the right decisions. And most importantly, don’t feel bad or apologize for your advocacy. You owe it to yourself!

And finally, a little surprise popped up last week and I didn’t have all of the info until recently to be able to share. I’ll attempt to be brief, no promises, though =)
I had an echocardiogram done last Friday to make sure my heart was working fine and to have a baseline since one of the chemo drugs I’d be getting is cardio toxic. During my pre-op physical on Monday, the doctor shared informed me that test results showed that the ejection fraction of the left ventricle was borderline low. This means that it’s not squeezing hard enough. My rate is 48% and normal is 55-65%. I did a follow up EKG (measuring the electrical activity of the heart) which was totally normal, and then I had a stress test (echocardiogram followed by 6 minutes of treadmill walking to get the heart rate up to 155bpm followed by another echo), which also came back normal. So, if I wasn’t going to be getting chemo, this little zinger probably wouldn’t matter. But, I’m guessing I probably don’t want to blast my heart when it’s already working suboptimally. *sigh*
I’m choosing to not worry about that for now since chemo is 4 weeks away. Today, my focus will be on getting rest and being discharged from the hospital.

My final answer March 15, 2014

Posted by Judy in Musings.
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“I’d like a bilateral mastectomy with no reconstruction, no lymph node dissection and a port insertion, please.”

“Are you sure about that ma’am?”

“Yes, I’m quite sure.”

“Is that your final answer?”

“Yes, that’s my final answer.”

My final answer. I’ve had 3-4 days to live with my final answer. I’m 100% certain that it’s the correct answer. I’m not certain, however, that I’ve come to terms with the implications of said answer. I still have 4-5 days to come to terms. In the meantime, I thought you might like to know how I got to the final answer.

My trip to Mayo made it quite clear that bilateral mastectomy was the correct choice. The decision to not do reconstruction was made almost at the beginning of this whole process, back in December. I have to say that I don’t like the option of NOT reconstructing, but I REALLY don’t like the reconstruction options available. Basically, reconstruction is not a walk in the park. It’s nothing at all like getting a boob job, not that a boob job is a walk in the park, but it is when compared to reconstruction. When you get implants, you still have a breast, which creates the shape. When you no longer have breasts, simply inserting an implant behind the skin would result in something that looks nothing like a breast. So you have two options:

1) Implants – these are inserted behind the chest wall muscle. Yeah, you read that right . . .BEHIND the muscle. Last time I checked, chest muscles generally are flat and certainly not rounded like a breast. To get that look, you have to strrrrreeeeetch the muscle little by little. (An expander is place behind the muscle and saline is squirted in at regular intervals.) I hear this is quite painful. Once the desired size is reached, the expander is swapped out for implants.

2) Autologous – tissue (including fat, skin, blood vessels and sometimes muscle) is taken from one part of the body and used to create the breast. The two common places to borrow tissue from are the abdomen (Uh, nope, I need my abs to sing, thanks!) and the middle back (That sounds like decreased arm mobility to me, no thanks!).

Neither option is very agreeable to me. Plus, doing reconstruction would guarantee the need for another surgery, thus putting my vocal cords at risk again. If there was a better option, I’d consider it. Since there isn’t, I’m choosing no reconstruction, the lesser of the two evils.

You’ll note that I’m not having a lymph node dissection. In fact, I’m not having any more lymph nodes removed. If you’ll recall, I had three lymph nodes removed and two were “involved” (i.e. had cancer in them). This put me in the “hmmm, there’s no clear cut answer on what to do” category. On the one hand, I could have a complete dissection (all of the nodes removed), which could possibly reduce the risk of metastasis while increasing the risk of developing lymphedema (swelling of the arm due to excess lymph . .. this is not curable). On the other hand, the nodes could be left in place, which would mean lymphedema would be highly unlikely, but there could be an increased risk of metastasis. (As a brief aside: so many times during this process, I’ve been presented with two options and have thought, “Well, both of those options suck. Give me something else, please!” It’s like I have to chose between bad and terrible.) So back to the lymph node issue. The Mayo surgeon and oncologists felt that a complete dissection was necessary while the radiation oncologists thought that was overkill when radiation could take care of any errant cells.

Oh, what’s that? You want to know what my rock star surgeon thinks? I thought you’d be curious! He basically felt caught between a rock and a hard spot. From a medical standpoint, he felt compelled to recommend a complete dissection due to the fact that no studies exist regarding the efficacy of complete dissections on women who have had mastectomies. The studies done on women with lumpectomies showed that there was no difference in survival between those who had complete dissections and those who had sentinel node biopsies (only a few nodes removed). But, you can’t just extrapolate those findings onto another group of patients that don’t fit the criterion. And here’s where the surgeon was stuck. While the studies indicated that he should recommend a complete dissection, common sense didn’t agree with that indication. If it’s okay to leave the lymph nodes in when you are leaving most of the breast tissue, why would it not be okay to do the same when you are removing most of the breast tissue? Do you see the conundrum? Suggest a course of action that doesn’t make sense yet is backed by medical science, or go with the action that has no scientific backing but makes total sense.

I really wanted the surgeon to make the decision for me. I was weary from making so many difficult decisions. In the end, though, I realized that it really was my decision to make. Hubs brought up the suggestion from the Mayo radiation oncologists, which was to leave the nodes, but then radiate the axillary area. It was as if a giant burden was lifted off of the surgeon’s shoulders. His eyes brightened just a little and he seemed to sit up straighter.

“Yes. I think that is a very reasonable option.” And with that, I decided to not do the full dissection. I did meet with the radiation oncologist just to make sure he was okay with that plan, and he was.

The last part of the surgical decision was whether or not to have a port placed. I’ll go into more detail in a future post about how ports work. Suffice it to say that having a port placed allows you to have blood drawn, be given medication and have the chemo drugs delivered without having a needle inserted into your vein each time. It’s more like getting a shot. This was an easy decision. I said, “Yes, please!”

So there you have it. Three weeks of mental turmoil and decisions that changed daily, and I’ve finally arrived at my final answer. While I wish that the answer were different, I am so very happy to at long last have a final answer. I can now move forward with treatment which will bring me that much closer to putting all of this behind me. And so I say, “Onward!”

Topless March 9, 2014

Posted by Judy in Musings.
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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?

  1. I got breast cancer while lactating.  Only 3% of breast cancers fall into this category.
  2. I got breast cancer at a young age.  Only 5-10% of women with breast cancer are under age 40.
  3. I have lobular breast cancer, which accounts for only 10-15% of all breast cancers.
  4. I have pleomorphic lobular, which account for only 1% of all lobular cancers.
  5. I found the cancer early, while it was still in an early-ish state, which is quite uncommon.
  6. I had positive margins after surgery.  Nationally, this happens to 25% of patients and locally it happens to 3%.
  7. 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, 2014

Posted by Judy in Musings.
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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, 2014

Posted by Judy in Musings.
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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:

1) 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.
2) 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?
Radiation yes no no
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, 2014

Posted by Judy in parenting.
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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?
Me: Right
D: And then chemo will get any small cells that were missed, right?
Me: Uh, yes, that’s correct.

Floored, again.

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?
Me: Yes.
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.
Me: Correct.
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.


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