The Tip Of The Iceberg

So, Right is down by half. At least the tip is down by half. Ok, so maybe it’s closer to two-thirds, but who’s measuring? On one hand, it’s awesome to still have any of my real nipple left, don’t get me wrong, but it’s still weird to know that I watched this bit of flesh die and fall off. It was exactly as weird and gross as you think, but it didn’t look like I thought it wold. It started with me being a bit out of sorts (I was on a lot of drugs and in pain, remember?) and not remembering to clean and refresh the dressings exactly as scheduled one single day. Apparently it was a major mistake at a critical juncture in the healing process. Ugh. So, have you ever had a little injury like a cut or scrape that got just a bit infected? Or it stayed too moist? Yeah…that. So the middle turned white and soft and a little gooey. Those are not words that should ever be associated with your nipple! The only bright spot was that it bled. A lot. After ending the use of the nitroglycerin cream, it was time to use some good ole’ fashioned Neosporin ointment to give it the best shot at healing. So here I was, with a scabby, nubby nipple, thinking “Suck it up, Buttercup!” I could’ve had one of the majority of mastectomies where my nipple was cut off and thrown out. A nub and areola that were part of the original trim package are way better than that. Ok. okokok. So, after 3 weeks, it is almost healed, with just a bit of scabbing left.

Speaking of areolas, they shrank! No kidding! It’s crazy! And they’re considerably lighter in color than they used to be. Also weird is that I can really feel the implants. And they don’t each feel exactly the same. One is firmer than the other, and the lack of fatty breast tissue is really noticeable. It’s not something that is really visible, and is going to resolve itself as my mead ad my body adjust. Dr. Schneider has reassured me that it’s an easy thing to fix, and is relatively low-pain. Essentially, it’s a fat transfer, and will help to fill in where there isn’t any fatty tissue anymore. That’s good, because I’m starting to notice that I am less and less enthusiastic about medical procedures. Hopefully that changes once I’ve recovered a bit from the rest of this nonsense. On the plus side, I have the best looking reconstructed breasts I’ve personally ever seen. Woohoo!

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This is what happens when the tissue is dying. See the white? That is dead. See the bit of red ringing it? That’s blood, which is great because it means there is living flesh under there.
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From the front, it doesn’t look too bad. And it’s almost healed, so I can start to get over it.
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I chose what my be the least flattering angle to highlight why and where fat will eventually be transferred. This is one of the hardest parts, visually. When I see the concave areas on my chest, it hurts. As great as they look, it’s something I’m still getting used to.

In the past week, I have really noticed some things about myself. For a very long time, I’ve accepted that I truly don’t like seeing doctors for myself. I don’t. Nothing has brought this to light like the bone biopsy situation. What situation? Well, we don’t get an official diagnosis or prognosis without a biopsy sample. Ok, so that sounds relatively simple and straightforward, right? Wrong. Let’s flash back to the “needle” used to biopsy my breast:

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That is a “10 gauge”, and it was a slightly smaller “11 gauge” that was to be inserted into my vertebrae. I was at the hospital, in a gown and my skivvies with an iv in my arm when the radiologist acme in to tell me that, based on the blurry CT scans, he didn’t have a clear enough picture of what was there to go in with that mofo and insert it into a piece of bone that is frighteningly close to my spinal cord. Not that he used those terms, but it’s the general idea. In fact, he showed me my CT scans so that I’d have a better understanding of the situation and advised me to have an MRI to clarify the size and location of the lesion. There is definitely something, it’s just that he didn’t have a good enough picture to see where he needed to go. FINALLY! The real problem is that I never, ever, ever wanted the second biopsy. Imagine that monster going into your spine! NO. no. It isn’t that I’m crazy or reckless or stupid. I have had to remind my oncological team of that last part several times, sadly. It’s that I strongly feel that the protocol that has been followed for breast cancer is backward and caused me so much anxiety and distress that I’m beginning to shut down at the thought of continued invasive procedures. There should have been an onslaught of scans and tests from the get-go, but there aren’t because the current protocol is to have surgery and then use the pathology of the tumor and lymph nodes to direct everything else. I get it, and it makes a certain amount of sense. But where I get hung up is in the amount of time that took combined with the fact that it is post-surgery-when I’m least able to lay flat, much less lay on my stomach for a biopsy, MRI, or x-rays-when I’m subjected to other things. An MRI, CT, or PET scan before all of this would have really changed the game. What a nightmare. Anyway, it also means that now I have to argue with my oncologist’s PAs and ARNP, because obviously I’m a complete f’ing idiot (according to them), and now when I see my oncologist I’m fed up, angry, and in no mood. No mood! I’m arguing because I don’t want a spinal biopsy. Here’s something else to think about: Biopsies hurt. It takes a while to heal. And at some point, as the patient, I feel like I should be put front and center. I’m not a cog in a piece of machinery. I’m the whole damned kit and caboodle! Me! This girl! How many times do we forget that as patients? As humans? Too often. It isn’t to be conceited, it’s simply to remind our medical teams that they are there for us and our needs aren’t always straight off of a checklist. But what do I know.

I do know that I’m quite the pincushion lately. And my poor right arm is over it! I can’t really use my left arm because I have developed some lymphodema issues, even though only 4 lymph nodes were removed. That means no needles or blood pressure cuffs on my left, and I have to be careful to not burn, cut, scrape, or harm that arm in any way because it will cause my arm to swell painfully. If left untreated, it could cause nerve and tissue damage. It also means that I’m having physical therapy massage to alleviate the pain and range of motion issued the surgery and lymphatic disruption have caused. It was a shock how much has been affected. I thought that my ribs were swollen and bruised only from surgery and maybe they tight sports-style bras I’ve worn since, but part of it was lymphatic. The therapeutic massage helps tremendously.

The other change is that my oncologist seems to have taken the suggestion of the radiologist and has decided to begin my chemotherapy a full two weeks earlier than planned. I’m ok with it. I had an MRI & a set of x-rays on Friday, and on Tuesday I will have a port surgically placed in my chest, through which my medication will be delivered. It’s exciting, because it means I’m two weeks closer to being done with this. It will make my upcoming trip to Colorado for a concert significantly harder, but not impossible! (I’m going to that damn concert if it kills me!) I got some handouts about the medication I’m taking and what to expect. It will be 8 cycles of 2 medications, Adriamycin and Cytoxan, every two weeks followed by 12 cycles of Taxol every week. Two of these drugs carry a risk of developing further cancers such as leukemia, two also damage the surrounding tissue if it escapes the veins, They all carry of fun bunch of side-effects and it looks like my face will be swollen and chipmunk-y for the next six moths or so. Plus being bald, which we all expected. I’m nervous. But I’m fairly ready to get this show on the road.

Finally, something that is really tough is that other people are so uncomfortable, so nervous, when I tell them what is happening. From doctors to nurses to new acquaintances, the first reaction is fear. It’s teary eyes. It’s an urge to offer comfort and support. It often manifests with them trying to convince me that I’m going to live, or that I’m so strong and that I’ve got this. Well, obviously! I’m not going to sit here and try to tell anyone that this isn’t an ordeal; it is. But it isn’t the hardest thing I’ve ever gone through. Physically it sucks, it’s terrible, but it isn’t any harder than so much else that has happened in my life. That’s the secret. We’ve all had hardships, we’ve all failed and faced heartbreak. If you hear the word cancer and your blood freezes, then you’re going to have a hard time. I had a harder time accepting unplanned pregnancies than I have had with this. Which isn’t to say it’s easy, but it isn’t the worst thing in the world.

Cancer isn’t the worst thing ever. Don’t let it make you feel sad or scared or worried. At least you still have the tip of your nipple, amiright? Ha!

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Waiting for another MRI and x-ray
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The wonderful Dr. David Rock, my cancer surgeon

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