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Surprise! July 3, 2014

Posted by Judy in Musings.
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I am not cancer free.

This should come as no surprise since there’s really no such thing as “cancer-free” when you have node positive breast cancer. There’s always a chance that some cell got away and then takes up residence elsewhere.

But that’s not the point of this post!

I am DONE with chemo!!

Now THAT’S an annoucement!

I went in to see the oncologist this morning, fully expecting to be receiving chemo #5. During the previous visit before chemo #4, he had said that at this point, we’d take it one chemo at a time to see if we’d continue, especially since there wasn’t any research indicating the difference between four and six chemo sessions. I was totally blindsided when he started out (after asking me how my voice was doing) by saying that the industry standard was four cycles and he wasn’t convinced that six was necessary.

Uh, what? I’ll spare you the deets. Mostly because we were so surprised that we don’t remember them, and partly because they just. don’t. matter! The upshot of the matter is that my labs looks great (blood cell counts are normal, all other functions are normal) and pushing further would definitely be more toxic for me, but the benefit might be negligible. I did make sure to ask him, “So in my particular case, being high risk because I’m young, you are comfortable stopping at four?” He said yes.

So we walked down the hall, scheduled a follow-up with him for two months from now, scheduled an appointment to have my heart checked out again, and scheduled an appointment to meet with the radiation oncologist.

DH and I decided that the oncologist just likes to surprise people. He caught us off-guard when I started chemo. (“Wanna start today?”) And now he caught us off-guard to end the chemo. (“Let’s just be finished. Is that okay with you?) I think it’s sort of funny, and keeps things interesting!

Some of you might be thinking, “That doc sure seems wishy washy! Does he know what he’s talking about?” Although it looks that way, he’s really very thorough and does his homework where research is concerned. When giving out advice, he always mentions different research studies and even talks about studies that are in progress or ones where the results are due in a few months. His seeming wishy washiness comes from the fact that in my case, there are no clear cut answers. If I had come in today saying that I had felt terrible after number 4 and my quality of life was really suffering, it would have been a no-brainer: stop chemo. Since my labs looked great and I felt pretty good, it was less clear-cut. I appreciated that he left the decision up to me. He presented me with the options and information and then allowed me to decide. Actually, if I change my mind, I can call him next week and say, “Actually, let’s go ahead and do two more.” and he’d support me in that, too. I don’t foresee that happening, though! =)

Sooo, next up, a mini vacation for me with my 7 year old and then after that, radiation. The end of the tunnel is near, I can see it! Hallelujah! Thank you, Jesus!

Alopecia June 28, 2014

Posted by Judy in Musings.
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The official definition of “alopecia” is: loss of hair, baldness.

Those two are not the same thing.

Initially, I was told that baldness was a sure thing. Once the chemo agents were switched to something that wouldn’t deep six my heart, I was told that baldness was a maybe but that I would have hair loss.

See, they are different.

You cannot be bald without hairloss, but you certainly can have hairloss without being bald.

Frankly, when I heard that baldness was a maybe, I was disappointed. I realize that sounds crazy, but stick with me here. Which would you prefer? A clean, bald head? Or a head with much of the hair missing and just a few tufts remaining here and there? I don’t know about you, but I would prefer the former. To be told that the latter was a possibility didn’t sit well with me.

Since I knew that some hair loss was definite, I cut about 10 inches off and donated it to Children With Hairloss the day after my first chemo. My oldest, who was 6 and hadn’t had a haircut in 3 years, also decided to donate his hair in honor of me. His donation was probably 12-14 inches. We both felt weird with our really short hair for the first week or so. Then we both realized the beauty and ease of short hair and were quite happy. My happiness was short-lived, though. About two weeks after chopping off my hair, my scalp started hurting me. It was so very sensitive to the touch, even just moving my head around on the pillow made it hurt. I had read that this was a precursor to hairloss, so I was prepared for the mass exodus of my hair. After a few days had passed and not much hair had fallen out, I took matters into my own hands. On a lark, I decided to just grab a tuft of hair and tug. Lo and behold, the tuft came out quite easily. Half an hour later, I had a nice little pile of hair sitting next to me on the floor. For the next few days, this was my past time. Anytime I was sitting reading or watching TV, I would pull on tufts of hair. The babes even got into it. The 3 year old really got into it, pulling hair out hand over fist! I found it to be quite amusing.

After about 4 or 5 days, you could finally tell that I had lost a bunch of hair. It was to the point where DH was like, “I love you, but that’s REALLY not a good look for you!” hahahaha. So, my friend buzzed it off for me. Not only did my scalp stop hurting, it also looked soooo much better.

Summer hadn’t arrived and spring had yet to figure out that it was its turn to show its face. This meant that me and my bald head were cold! It also meant that I got to go shopping for scarves and try out the hats that had been made for me. I had fun figuring out different ways to wear the scarves. I did find, however, that as soon as it started warming up, having scarves or hats on my head was waayyy too hot. Now that summer is in full swing, I only wear scarves to my church job and sometimes to church. Otherwise, I just go bald. I’ve been really surprised that people don’t even seem phased by it. I don’t mean friends and acquaintances, I mean people on the street. Sometimes little kids give me a funny look, but mostly, I’m treated totally normally. I guess I thought I’d get a lot more funny and uncomfortable looks. I’m okay with the lack of said looks, just surprised.

Since this post would be useless without pics, here a little sampling.

Post-hair donation and bald (Note the very pale part of my head that had been hidden under hair for my whole life. That is now tanned, but I did sort of feel like my really pale head was like a little beacon, leading the way!)
hairloss

The progression to baldness
hairloss progression

The scarves – Not all of these attempts were successful. I really like how the turquiose one turned out, but I haven’t been able to replicate that. Alas!
hairloss scarves

Sometimes I wonder if my hair actually would have fallen out if I wouldn’t have been pulling on it. Maybe I wouldn’t have gotten to the point where I’d get out of bed and a pile of hair would just be sitting on the pillow. Then again, I didn’t really want to wait around for that to happen.

My hair does grow back a bit in between cycles. DH and I have been amused to discover that the grey hairs are the most tenacious. They grow the fastest and were the last to fall out. DH was also surprised so see how many grey hairs I had. I knew they were there, hiding under my mountains of hair. Now, he knows they are there, too. I’ll be curious to see if my hair grows back the same color and texture and to see if I end up with more grey hairs than I started with.

Always an adventure around here!

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.