Darn Good Lemonade
Making Lemonade From My Pair of Lemons, Diagnosed at 30 & Life Beyond Breast Cancer

May 2012 archive

If I Said This Was Easy You Could Call Me a Liar

The bone scan machine.

As much as I want to insist that I have been completely calm and relaxed and haven’t thought about cancer at all this past week I would be a liar. Staying positive is hard work and pretty much impossible. You feel like the bringer of doomsday, but these days, EVERYTHING is cancer. Acne = cancer. Sore toe = cancer. Mole = cancer. You name it… luckily I only panic about things that realistically could become/be cancer (at least I tell myself that). I am not sure when things stop being cancer in your mind. I really couldn’t actually believe that the lump I had was going to be cancer (the statistical possibility, at 30 years old, was extremely low, but someone does always have to be THE statistic). This is maybe why I overreact about every other lump, bump, ache and pain. I can’t discount this type of experience though, women who find out that they have mets (metastatic disease) find out in these kinds of circumstances, which is why it can be super scary.

I forget people aren’t obsessed with researching breast cancer online like I am (fascinated, seriously, fascinated…). If you are diagnosed at stage I even if you have treatment you can have a breast cancer tumor show up somewhere else in your body. This now means you have stage IV or metastatic breast cancer, not stage I anymore. No one dies of stage I cancer, people die of stage IV cancer, which means the cancer eventually moved elsewhere in the body and took up residence. Metastatic breast cancer does not have a cure at the moment, treatment has improved, mets patients live longer and more comfortable lives than they did 10 years ago, but it isn’t a life you would personally go out and choose for yourself. Mets patients live from scan to scan and one chemo drug to the next. If this ever becomes my fight I will certainly take it on, but at the moment I really think it would be cool to someday be declared in remission.

We treated the cancer in my breast and armpit, there is very little chance it will ever grow back there. The teensy chance is my lungs, liver and bones. So a four week back ache becomes a pretty serious concern, even though the chances are still low that it is actually caused by cancer. I have never had a back ache like this that has lasted this long with medication.

One of my employees told me to stay away from “Dr. Google” and explained that they look up everything related to their young daughter and freak out because according to Dr. Google she has had about 72 fatal illnesses. So true… I try to be careful what I look up and how much I take it seriously. I am not a medical professional, and every ache and bump is probably going to freak me out. Mike and I decided that we will have a scare regularly every few months and hopefully they get further and further apart or less and less intense. It just complicates things when the results of a test, no matter how low the possibility is of it being cancer, mean life or death.

Don’t worry about me dying from cancer, I am probably going to die of a heart attack at this rate. YEESH.

I went in this morning and got my radioactive isotopes injected. The radiation tech that injected me was wearing very little protective gear, so it seemed that my assumption about the level of the radiation involved may have been a bit over the top. PET CT, they tell you not to hug babies. Bone scan – meh – do whatever, hug ALL of the babies. The machine was exactly like the one they use for the mugga scan. Between injection and scan we barely had any time to run a few errands, eat lunch and get back to the hospital to get scanned.

You can see my hip bones on the monitor. Creepy.

I asked the tech when they expected to have the results, she told me my doctor would have them at 5:00. This means I called at 4:30 and left a message for my oncology nurse that I heard they may have them this afternoon (hint hint). After the scans were done I went home and curled up in bed and took a nap. The emotions wrapped up in these tests are exhausting, and it is impossible to not take in “all of the possibilities.” Plus it seems to be that when we are overly optimistic it doesn’t turn out, so pessimism has paid off the last few times… sort of.

The nurse called and told me that my scans came back perfectly clean. In fact, they were freakishly clean, I had no “uptake” of the isotopes at all anywhere in my skeleton. I have never broken a bone and I have no spots on my bones mending themselves anywhere. AWESOME news for my skeleton, but now I have to figure out which one of the 1,000+ things that cause back pain (thanks Dr. Google) is causing mine. Right now I lean with the surgeon’s opinion, the pain is awfully close to where they took the muscles out of my back to be “coincidence.” Now that we know it is a soft tissue problem (even though the previous soft tissue treatments weren’t fruitful), we have narrowed down the possibilities. Hopefully we can come to a conclusion, resolution or a miracle.

I actually had three days with little to no pain, so maybe I am healing, but I ended up sore again Tuesday and it could be a combination of stress and sore back that make a super sore back, maybe I just need a hot massage… Now I think I definitely “need” a massage. I am new to the world of back pain (I certainly have pulled out my lower back a few times, but the mid-back is foreign to me). I guess we will see, but the “worst” possible cause is ruled out, so now we can look for solutions and hopefully get everything back in order.

I am also getting a new chair at work and we are going to replace our ten year old mattress at home. We will figure it out. :)

Radioactive Urine

The view of Huntsman Cancer Institute from the breast cancer wing.

I don’t know where I come up with these titles I swear… So… the pain in my neck got better, but the spot in my mid back got worse. Mike and I swore at the internet yesterday because there is just way too much available information when it comes to cancer, side effects and all other lovely things from Cancertown.

I had my appointment this morning. I had called the nurse a couple of days ago to see if I should see my Medical Oncologist rather than the Surgical Oncologist that I was scheduled to see. She suggested that I see whoever could see me first. I was already booked with the surgeon because of the weird lumps, so I opted to go in and see her, even though my lumps had all gone away. She looked at me and felt like I needed to go to physical therapy because of the location of the pain on my back the back pain (a couple of inches below my back incisions), she wanted to see what my Medical Oncologist thought about it and went to consult with her.

She came back and made me bend in different directions and poked along my back and I discovered that bending backwards was a good way to set off the pain (any other direction and I was fine, poking I was fine, but bending backwards…). YOWZA! After bending me backward she held my arms back and pushed on the spot. My back is super pissed this evening.

My Medical Oncologist was busy seeing new patients today so she had to sneak over to see me in between appointments. She is such a fun lady. She gave Mike and I each a gumball and she asked me a few questions (Mike got stuck with the pink gumball because SOMEONE took the white one, not sure who, *cough cough*). She told me that normally she would tell me to go home and take IB Profin for two weeks, but I had already done that. I had sincerely hoped that IB Profin and muscle relaxers would do the trick, but they didn’t even touch the pain. So she opted to go ahead and order a bone scan. She noted that the chance that my back pain was cancer was minimal, but that we would check to be sure.

Quote from WebMD:

Just before the scan begins, you will probably be asked to empty your bladder to prevent any radioactive urine from blocking the view of your pelvic bones during the scan.

I got to work and found a cute present and note on my desk. :)

Radioactive urine, you heard it. Apparently bone scans are a hot commodity at Huntsman and they couldn’t get me in next week so they set up an appointment at the U of U to get it done Wednesday. I go in at 10:30 for the injection to make my bones glow and at 1:30 for the scan. So it will be a full day at the hospital (maybe we will sneak out and do some shopping while we wait for me to become properly radioactive). I do figure that I am still owed some super powers after all of the nuclear medicine that has been injected into me and along with radiation treatment. Certainly I will be able to fly by the end of next week!

So I am hopeful to get the test done and probably head off to physical therapy as my next step. I am open to whatever solution gets my back to stop aching and gets the gnawing worry out of my mind. Life has been awesome, and I want it to keep being awesome! I have a trip to Hawaii to plan. Mike won free hotel and airfare to Hawaii at work this week!

Pain in the Neck

On the High Line in New York City

I feel like a pain in the neck, but really, I actually have been having pain in my neck.

I got a cold after my trip to New York last month (yes, I went back to NYC, luckily it remained adventure free this time, unlike my crazy trip in October). On my flight out the flight attendant pointed at my lymphedema sleeve and asked if I had “earned it.” I stared blankly at him for a moment and once it connected in my brain I blushed and said “yes.” He and I chatted later on during the flight, he had recently finished treatment for colon cancer (he didn’t look a day over 40). He was very sweet and I realized that my sleeve is a giveaway that I had cancer, but I did “earn it.” So be it. The cold went away and then my body started acting up.

Every ache and pain in your body is under a microscope as you navigate life after cancer treatment. Aches stand behind a megaphone shouting directly in your ear. My past two weeks have been filled with a body not quite wanting to be agreeable. I had a lump show up in my right armpit (cancer-free side), I let it sit for a couple of days and gave in and called one of the nurses at Huntsman. An appointment was booked and the appointment was subsequently moved around a few times. Once it was moved by me because of a meeting and it was moved few more times because of difficulty squeezing me in and emergencies that came up (my surgical oncologist is a very busy woman, it took me 14 days to get in to see her the first time). I am still never certain which oncologist to go see when something pops up (I have three, a surgical oncologist (surgery to treat cancer), a medical oncologist (chemo to treat cancer) and a radiation oncologist (radiation to treat cancer)).

While I was dancing the appointment jig another lump showed up in my left side. Both went away by the time the nurses called and said that they could just go ahead and schedule the ultrasound. At that point there wasn’t much to look at so we opted to delay any tests unless another lump showed up. While my armpits were being lumpy also had some neck and back pain show up. It was bad enough to bring a few tears to my eyes here and there. It hasn’t been debilitating (didn’t stop me from lifting things), but it has been enough to make me uncomfortable when I sit still for an extended period of time. I have a new lump in my right armpit today (third one), so I guess they may have something to look at next week. This has all been combined with some fatigue so I am just one big ball of tired sore lumpy nerves (I am just one huge party).

This time I have just wanted to ignore it rather than go in, but my family members don’t support that strategy. I will get to go see a doctor one of these days soon to rule out the scarier possibilities of my back pain, neck pain and lumpy armpits. The spine and lymph nodes are the more common spots for breast cancer metastasis if it does occur. The lumps in my armpits are just strange because they keep showing up and going away (a persistent lump is something to be a bit more worried about, I am just more curious about them at this point). A year and a half ago I would have ignored all of this (after two weeks of back pain I may have given in and gone to see my general practitioner), but now every ache has a new meaning and a taste of fear tied up in it with a pretty little pink bow (I did seriously try to avoid going in about my lump in my breast, because there was just no possible way that it was cancer *sigh*).

I am more sensitive to pain than I was before treatment. I don’t know if it is related to nerve damage from chemo or if I am just hypersensitive now. Colds are about twice what they used to be and my arthritis seems to have a bit more of a bite. Which also has made me decide that I am now a crochety old woman with nothing to do but complain about my medical maladies. Which makes me a pain in the neck.

Life has been good beyond my little worries. I am enjoying the rewarding challenges of my job (it is good to work for a nonprofit company that makes a real impact in many people’s lives), spending time with my husband and just enjoying life in general (don’t take my posting about aches as a dissatisfaction with the awesome things in my life, I just figure I should record the realisms good and bad as they occur – the blog has been a way to get things down “on paper,” my public therapy). I spend more time sitting on the back porch enjoying a little sun on my face, smelling a few more roses and sneaking a few extra snuggles and kisses from my hubsters.

There are a lot of people that survive cancer treatment, I plan to be one of them. After freaking out over a bad pap and three lumps in what is now my left breast, I am exhausted from letting myself worry too much and I choose to be optimistic instead. I will continue to live like I am living and take it from there.

Sunset in New York

 

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