Dante is one cool cat
Get ready for me to kill a euphemism and talk about my uterus.
I shudder whenever a doctor tells me they are going to biopsy something. Apparently anytime one part of my body or another decides that it doesn’t want to work I get a hollow needle or a punch tool pulling at my wee bits. I was actually a bit surprised today when the OBGYN opted to go ahead and biopsy my endometrial lining. I am actually not a ball of nerves about this particular biopsy. I expect it to come back normal.
I went to go see my doctor because Aunt Flo came to visit and refused to move out. Three weeks of Aunt Flo and I am ready to kick her to the curb. I have been having mood swings, dizzy spells, depression and a whole slew of fun things. We did another test today that seems to point to the more likely culprit for Ms. Flo’s nonstop partying at Mandi’s house – checking my thyroid. Mike and I have mutually admitted that something is wrong with me, we just didn’t know what, so finding some solution to my hormonal mood swings would certainly be a blessing (…for Mike, I still think I am a ball of fun, even when I am crying over a toothpaste commercial).
According to Dr. Google my symptoms are a pretty close match. So, honestly, I am just hoping I get a phone call that involves a prescription for thyroid medication. The alternative is that my uterus may get an ultrasound based on the biopsy results. Tamoxifen is known to create issues with your endometrial lining (and potentially cause uterine sarcoma, but I am at the lower end of the risk spectrum on that one, plus it doesn’t happen this quickly).
Guess what they normally use to treat my condition? Birth control pills. Those pesky hormones that I am not allowed to have.
Dr. Google also informs me that there seems to be a tie between thyroid issues and breast cancer, but they haven’t distinctively identified exactly what is causing what. I swear my thyroid was in my radiation zone. I may need to double check with my radiation oncologist (but I don’t see her for 9 months). I remember someone somewhere told me that thyroid issues could be a potential side effect, luckily it is very treatable with medication these days. I will just be happy to find out what has been causing me to feel a bit crappier than normal. 
PS. The good news was, I am not pregnant (yes we tested, ectopic pregnancy also has some similar symptoms). Silver lining I tell you. Silver lining…
"Gucci Hospital Gown"
Yesterday I went in for my quarterly, not-coming-with-bumps-or-back-pain check up. I came in with nothing more exciting than the fact that I have been having some strange dizzy spells off and on for the last month. I am thinking I need to get my blood sugar levels checked since I had a reaction to Metformin (a diabetes medication) that was being used in a study on helping decrease cancer recurrence.
I forget how much fun the nurses are at the Huntsman. After the nurse checked my weight, blood pressure and oxygen she offered me a designer hospital gown. My choices were Gucci or Armani. I chose Gucci of course.
I love residents. Seriously. You can tell who is brand new and who has been around for awhile. It makes for great entertainment, you get checked by the resident, they report, and you get checked by your doctor. Huntsman Cancer Institute is a teaching hospital, so residents are a regular part of being a patient there. Once in awhile they test you patience, but I am happy to help them learn the trade. The one I had yesterday was brand new bless his heart. He asked me if we had children (I told him no, just doggy furballs…) and if we were planning on having them, which I have never been asked at the hospital and it kind of threw me off a bit (we aren’t sure I can after chemo and still couldn’t test the theory until after I finish five years of Tamoxifen). There was also some confusion on why I have lumps in my cancerous side (which is confusing because I shouldn’t have much tissue in there to create lumps) luckily the lumps have been checked and are fine. He was sweet and I really think it is amazing that great doctors go in the oncology medical field, I am not sure if it is ever a job I could handle.
They did some simple tests to verify that I don’t have brain damage (I got an A+) my brain works just fine (this could be debated). The doctor felt that I was good to go and could go ahead and wait three months for the next appointment (remaining NED – no evidence of disease). We planned out my next three appointments which has me scheduled every three months with one of my doctors through May of next year.
Today is close to the one year anniversary from the day I started radiation for breast cancer. It still sort of amazes me that it hasn’t even been a year since I finished treatment. It feels like a year since I finished. In fact it feels like a few years… I guess that is a good thing.
Walking around Downtown Denver with Mike.
Amazing how much time passes and I realize that it has been a bit since I updated the blog. I am consumed with work and life and summer. My last post was surgery advice, so I didn’t really update on our lives.
My previous promises to myself to work out everyday were overcome with promises of the snooze button and a few more winks of sleep. My determination to exercise was replaced with comfy sheets and lazy mornings. This week I have moved back in the routine of getting myself up, watching some Netflix and busting some moves on the elliptical. What forced me out of bed in the morning is less about getting fit and a bit more about fixing my blues (which Mike calls “cranky” I just call it the blues). Summertime isn’t a normal time for me to be down, I figure it is just a bit of everything catching up with me. It is perfectly normal, especially when you throw in the hormone changes, but I want to be downright zippy, happy, goofy and cheesy. So I am working on it.
I went in for my fourth haircut since chemo last spring/summer and we discovered that the new hair growing under my curls was straight like my old hair. So I took a deep breath and we chopped off the curls so that I can try growing it out straight rather than try to figure out what to do with the curls (I am no beauty queen, thus my hair needs to be fairly simple to do).
I had a business trip to Denver last month and Mike tagged along the weekend before so that we could explore downtown Denver. It was ridiculously hot so I bought several sundresses to survive the heat. We had fun just relaxing and even accidentally ordered the movie “John Carter” from the hotel room and rather than call the front desk to admit I had hit the wrong button, we watched it, I now really need two hours of my life back.
First time out on the boat this summer.
Summertime has come to Utah. This year is much hotter than last year (and much drier). The heat reminds us of why we bought a boat a few years ago. We have been out on the water almost every weekend.
Sunshine can also bring on those Tamoxifen hot flashes, I am finding that I get them less often than when I started taking it six months ago. Last July I was in the midst of full-blown menopause, so the difference is pretty much night and day (I am lucky that the chemo-induced menopause was only a few months long). I am thankful that most of my side effects from Tamoxifen have been fairly minimal.
I have been dipping my toe into the housing market in Utah. We have been in our house for over seven years and I am ready for a new home. There is a certain level of fear about making big financial decisions right now so we have to get ourselves situated properly to take on less of a risk if I do end up getting my way and we move. We have looked before, but found we preferred our existing home. We will see what happens!
I won’t be in for a check up until early August. I am enjoying a nice break from the world of medicine.
I had a very nice woman email me because she is going to be taking care of a friend after her double mastectomy and asked for tips and tricks on how to take care of a patient after a mastectomy. I figured that I would also share my advice on a blog post since I know some website visitors are caretakers of breast cancer patients and breast cancer patients themselves preparing for surgery – and my life is pretty boring cancerwise lately (feeling great). So… here goes (this is going to be really long), based on my/our experiences only, please understand. Everyone is different.
When I asked Mike what advice he would give his answer was: “Yogurt, pudding, purple Gatorade, TV in the bedroom (otherwise your wife won’t lay still), and leave them alone (pop your head in once and awhile, get grunted at, go away).” Whew, I sound like a good time. Also, he knows I posted his exact statement and he fully agrees with it, twice.
My surgery before chemo - I had the option to start chemo or have surgery. I chose surgery first. I should have healed a lot better, your body does well at this time, but stress is not good for your body’s healing process.
Surgery shortly after chemo – I opted to go ahead and reconstruct the healthy side after my complications. This was much harder, MUCH. Comparing my lat flat reconstruction on each side, my body had a very hard time recovering shortly after chemo (three weeks). My body was even madder at me when I threw radiation on top of surgical recovery. I started working one week after my mastectomy from home (my choice and a bad idea for me) and I was back in the office after two weeks after my mastectomy (bad idea for me again). I did wait over three weeks after my first lat flap to go back. I found out about http://www.cancerandcareers.org long after treatment, I haven’t spent much time on that site, but it may be helpful for other woman like me. I suggest three weeks minimum healing time after any major surgery, otherwise you chance a million more surgeries and missing more work than you would have, had you taken care of yourself in the first place…
Items to buy:
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Surgical drains. Note the pudgy belly, everyone was feeding Mandi good.
Velcro, big safety pins & cotton yarn – Every woman manages her surgical drains differently. I bought a top that was able to hold three drains, but guess what, I had five surgical drains after my mastectomy and six after one of my reconstructive surgeries. The drains are worse than the surgeries. I am not kidding. Read about Gus (yes, we named one). I would usually use a safety pin and attach them to a velcro “belt” when I had several of them. For showers I would string them through cotton yarn while I showered and switch back to the safety pins and velcro. Once I got down to a drain or two I would just use yarn. The safety pin/velcro method helps with lots of drains because they can’t move around, once you are down to just a couple of drains it is more comfortable if you can adjust them, so I would just use yarn. I think I let Mike help me with them for about two days, they were gross and I preferred to manage measuring the output by myself.
- Baggy button up shirts and cover up sweaters – I spent more time finding clothes to hide my surgical drains than anything. I founds that I needed baggy shirts that didn’t rub on my chest, with extra fabric on the chest and layers of cover ups really helped hide what was going on.
- Soft foods – Yogurt, pudding, rice pudding, bananas, anything easy on the tummy. I was a fan of making smoothies – blending frozen berries, spinach, banana, ice cream (or yogurt) and milk to appease the tummy. When you have a pain killer regimen that is hard on your stomach, you need to take them with food, but half the time you don’t have the appetite. I found bananas to be easy to get in my tummy when I needed to take my medications. Stocking up on “easy food” was always first step after surgery. You may want to avoid too many foods with soy, it is a controversial food product for women with breast cancer. It is important to eat, so let them eat whatever they can get down for the first few days.
- Knee pillow – You can’t lay on your side for a long time after these surgeries. It doesn’t matter which side it was on, it hurts. The best trick I learned for feeling like I was sleeping on my side was to place a pillow under my knees so that I could turn them. I still sleep with a body pillow now to sleep on my side after my reconstruction.
- Recliner? - I bought a recliner before surgery having read that a lot of women prefer sleeping in one. After shopping for them I lost a few tears because the nice ones were spendy. I managed to find a used and very nice recliner by watching the local ads. We named it the “Mandi chair” and I just went to go sit in right now because it is so comfy. The dogs lived on this chair with me for many months (so make sure there is cat/dog/child room to squeeze in – they were my best buds). I was never able to sleep in the recliner, but it was really helpful for me when I was just resting and much more comfortable than the couch. On the nights I couldn’t sleep propped up in bed I would sleep on a futon recliner (it looked a bit like this one, I found that I had those sleeping issues a bit more on chemo than after surgery, but sleepless nights come with both). I would sleep on the futon with my back elevated and about five pillows surrounding me (I found that my other recliner required me to “push” to keep it reclined vs. the sedentary futon that kept my legs straight and put my back on an incline).
- Shower chair - I didn’t use it often, but within a day or two after surgery I was allowed to take a shower (surgical glue is some crazy stuff). I would get dizzy after the shower, so either stay close by, or have a shower chair the first days after surgery.
What not to let her do:
- I used http://www.lotsahelpinghands.com after a couple of surgeries to organize meals because Mike didn’t usually have enough energy to work all day, clean and make a healthy meal (when I was stuck home a speck of dust that I was unable to clean up looked like a boulder). The website allowed me to put everything on a calendar and I could look it up when I needed to, chemo does not do great things for your memory, having it on a website meant I didn’t have to try to remember who was coming when. One of the best things anyone every did for us was bringing us food, I still look back and appreciate it so much, but the hardest part was organizing it before I used the site. The website also works for setting up other tasks you need to make available for help (rides to appointments) and lets people sign up for what they can do to help when it is best for them.
- Vacuum - This motion is terrible after these kinds of surgeries. Loading and unloading the dishes from the dishwasher is just about as bad. Get help or organize help for housework. http://www.cleaningforareason.com is an option for people in treatment. Mike opted to take over the heavy labor instead. We discovered he is about ten times better at vacuuming than I am, but don’t tell anyone.
- Cooking – Chopping, stirring and a lot of motions made in cooking take many weeks to participate in again. I genuinely think I messed up a surgery chopping vegetables. Just don’t… have easy to make food or have people bring meals. When I was able to cook I would frequently make extra and freeze the other part for later.
- Childcare – I don’t have experience here, but from my own experience, the best thing I could do is sleep as much as possible the first week. You may want to arrange people to help based using the Lotsa Helping Hands website, but please remind everyone that the point for this is to give the cancer patient quiet time to rest and heal. It takes a lot of energy to update everyone on everything as they come to visit, it is awesome to see everyone when they come (so as the patient you definitely want to chat, but have limited energy on how long), so keep it short if you can.
What to expect: I haven’t spoken to a woman that thinks that a mastectomy is the best thing that has ever happened to her (surprising eh?). It makes you depressed (reconstruction can do the same thing, it isn’t what it was, I am happy with my surgery, but you aren’t exactly princess charming after these surgeries). You can be shocked, sad, angry, screaming inside… do all of it. You make major decisions about your body within a short period of time. Mourn. We are raised with part of our sexual appeal/identity being tied to our breasts. My surgery was a skin and nipple sparing mastectomy surgery, I woke up two cup sizes smaller than I started because I had immediate reconstruction, which made it easier, but not “easy.” For women interested in this kind of surgery, my surgeon and plastic surgeon have a site about it, PLEASE understand this website is very graphic, you were warned. When I did lose the breast expander on my healthy side due to surgical/chemo healing complications I had to relive the experience again in a different way. Just understand that this is a scary time and the patient may not always be on their best behavior.
Mike also suggested not to tell the patient that they will be “ok.” I hated being told I would be ok, I wasn’t ok, and I was weird about being told that. I needed to decide that for myself (prayers, well/healthy/healing wishes, support, caring thoughts, luck, all of that is greatly appreciated, I just wasn’t “ok,” and didn’t like being told I was going to be that way). This could just be me! I am still wary about being called a survivor, I just tell people I have had breast cancer treatment. It is all about personal semantics.
What I honestly don’t know: How women have surgery and care for babies, young children, etc. I have major respect for women with children that go through breast cancer treatment. I wish I could give advice here, but I can’t claim experience in an unknown.
Please add your suggestions and recommendations in the comments below:
Yesterday, June 3, marks exactly one year from my final chemo infusion. Life is full of strange anniversaries after cancer treatment, some good, some less good, but each anniversary is a cause for celebration in its own way. I find myself in a strange transition between moving past everything, but knowing that everything can turn itself upside down unexpectedly. I have been putting my life back together even though it never truly fell apart. Bits and pieces just had to go on pause for awhile. We all cope with life and its ups and its downs in our own little unique ways.
I didn’t realize it would take as much energy as it has to recover emotionally from the improbable possibility that I had metastatic breast cancer to my spine and the relief that comes with the news that something isn’t cancer. I guess I didn’t realize how truly afraid I was deep down inside – life in active fear is not a good life. So you learn to tuck that fear back down, put one foot in front of the other and go on.
Recently I was thinking about how much I love my husband and how we have planned to get old and gray together. We have random plans about where we are going to live and what we will do when we retire together (the typically involve the ocean, a boat and a beach house). Today I was able to visualize myself there again, sitting on that porch, watching the waves in ocean, breeze blowing my gray hair about, sipping a beverage that several of my loving relatives wouldn’t approve of and just being together. Cancer has a way of strengthening a relationship or destroying it, and I was lucky enough that ours really did result in the life lesson to not “sweat the small stuff.”
So, I love my husband tons, my family is amazing, and I love my job (and my four-legged children Zack and Dante). My friends are awesome, I miss some of them as I see some less because life is a bit busier again. Life is good.
I am a different person than than I was two years ago. I am o.k. with that. I have always been in a hurry in life, I needed things to happen NOW. Patience is a virtue, and when you learn to spend hours and hours jumping from an appointment, to a test, to a REALLY long chemo infusion you realize that sometimes you just can’t be in a hurry. Slow down, enjoy the moments and stop focusing on tomorrow. The day goes by too fast in my opinion. I want to savor more moments (yes, I am cheesy).
My back has improved. I imagine it is related to my decrease in stress, a doctor hasn’t poked it hard recently, more exercise, changing chairs at work (no new bed yet…). I can tell that it can easily be pulled/hurt/upset. I am pulling weeds by sitting down instead of bending over (which I think is a major improvement, weeds have been pulled!). Mike and I figured out that planting the garden is when I aggravated my back, so I am a bit more careful as I build up strength. I have not gone to physical therapy yet… the decrease in back pain has loosened my resolve to go, but if the pain comes back I promised myself I would go. I am tired of appointments (it took me four weeks to make a hair appointment to tame my wild mane – I go in Thursday for haircut number four).
With anniversaries come memories. Other items and situations also stir up memories. I was giving my mom some of my radiation burn medications/ointments/sprays today (I have handy dandy stuff if you ever get a sunburn or any kind of burn) and I told her it was stirring up memories of radiation (I guess I have most of that blocked out along with most of my chemo experience). I keep the good memories, good memories are good…
Here are some photos of my progression since diagnosis:
1/9/11 – Just before surgery at Mike’s work party. I called it one of “their” last evenings out on the town…
Gussied Up
1/18/11 – During the testing phase, this is the day we found out that my breast cancer had moved to my lymph nodes.
Here I stand in a billowing gown of Huntsman oversized goodness.
2/10/11 – Two weeks after my bilateral mastectomy:
Two weeks after surgery and I am "rockin it" and feeling awesome.
2/25/11 – First chemo infusion, Adriamycin and Cytoxan:
My lucky pearls from my mom.
3/11/11 – Chemo infusion number two:
Another super nice "drug pushing" nurse.
3/13/11 – My mohawk that barely stayed in place while we shaved my hair that was falling out rapidly:
Sporting a mohawk.
3/25/11 – Third chemo infusion:
Showing off my drugs.
4/8/11 – Fourth chemo infusion, final Adriamycin:
Final Adriamycin injection.
4/22/11 – First Taxol, fifth chemo infusion:
Dad and I.
5/6/11 – Sixth chemo infusion:
Our dueling PICC lines.
5/20/11 – Seventh chemo infusion:
Dad, Dereck and I.
6/3/11 – Eighth and final chemo infusion:
Mom and I at my final chemo treatment.
7/18/11 – My first signs of some serious hair and I finally returned to work after taking a couple of months off for surgeries and my final chemo treatments:
This is my fuzzy and I shall call it my fuzzy. 1 1/2 months post chemo.
8/10/11 – My hair was long enough that I quit hats and scarves, prepped for radiation and EYELASHES!
Hair, Eyelashes and Eyebrows Oh My!
10/18/11 – Starting to really feel like I have hair:
Goofy picture that makes me giggle, but look at all of that hair!
11/12/11 – After my first haircut and *cough cough* no more gray hair, not that I ever had any:
At work after my haircut and the new color.
12/19/11 – After second haircut:
Mike took this when we were goofing off at a friend's house. I call it "deep thought."
2/14/12 – Lunch with my hubby and apparently I have breast lumps, again… but not the cancerous kind:
Lunch with Mike.
5/5/12 – Visiting NYC:
On the Highline in New York City
I am completely amazed that it has been an entire year since my final chemo treatment. Life is so incredibly different this year than it was last year, and it will continue to be marked with strange anniversaries, which I will celebrate on the inside or the outside. Each new day is a blessing.
PS Today I found a Gatorade in the freezer and I asked Mike why he left a Gatorade in the freezer. He laughed and said I had stuck it in there on one of my “chemo days” (which means I was out of it) insisting that I needed my Gatorade really cold and I forgot about it (chemo brain). The Gatorade is thawing on the counter so that I can pour it out. One year later…
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.
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!
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
I have been having a lot of nerves wake up lately.
Celebrating life with my friends and showing off my curly hair right after my third haircut.
Public Service Announcement: Tune out on this post if you are queasy about nerves and surgery stuff, but I am posting this for women considering reconstruction, a mastectomy, or are just strangely curious about your body after such events (I find this stuff fascinating).
When I was 12 years old I was hit by a car when I was riding my bike across a crosswalk in front of my junior high. It was raining and the 17 year old driving her mom’s car was going 40 MPH. I was a lucky goose and she only hit the back tire of my bike. I am still not sure if she was going too fast or if I gauged the whole thing wrong. My knee broke the plastic gear shifter on my older brother’s mountain bike and I was thrown several feet in the air with my leg hitting against the plastic (sorry about your bike Justin). It sliced through my leg to the bone. I didn’t have a single broken bone. I had been tossed in the air like a ragdoll and my bones stayed intact… Which is why I say I was a lucky duck. *knock on wood* I have never broken a bone in my life, but I have had more plastic surgeries than most 32 year old women, none of them actually elective (I should work on that, I am seeing a lot of ladies with some seriously puffy lips on bad reality TV shows lately, not that I ever watch bad reality TV…*cough*).
The doctor at the ER sewed the sutures on my shin too tight, so subsequently the tissue between the stitches ended up dying and I had two plastic surgeries over two summers during my teenage years to make the scar less obvious (thus I didn’t wear shorts or skirts for most of my teenage years because I was usually asked what had happened, my eventual answer was that I should pay better attention when I shave and that one really earned me some funny looks).
My leg in sutures and a polaroid of the bike I was on, note the shape of the back tire.
Why do I tell you this story? I tell you because I am no stranger to nerve damage. Especially after they had removed all of the incision down to the bone and replaced them twice (starting to sound familiar). My nerves never quite stitched themselves back together properly, so the sensation in my leg is “funky.” Not quite numb and the only sensation I have there is pain-ish. So when they removed the latissimus dorsi in my back I expected my back to remain “funky.”
After a bilateral mastectomy your skin is numb up front. Numb to the point that they stick big hollow needles in your chest and fill up breast expanders and the only reason you may react is because the rate at which that butterfly needle comes in you think they are going to poke out your lung. -*SNAP* needle inserted- So imagine the look of surprise on my face when I felt them insert the needle on my right side to expand it after I had a latissimus flap surgery to put the expander back in. My eyes flew wide open and I looked at my favorite nurse Vicki and said “I felt that.” I felt the next one too.
My nerves are in the process of recovering. I am getting a lot of feeling back in my back, I think that will get pretty close to normal as time goes on (benefits of having a good surgeon) and I have some sensation in my chest. I am not sure if I will get more or less, but it seems that bringing the muscle around gave me more active nerves (which is strange at times if I run into something unexpectedly). One thing that you never quite fully expect from a nipple and skin sparing mastectomy is that your nipples still react to cold – but you can’t fully feel it – so you notice it a bit unexpectedly. You learn to wear thicker bras (I have found the Victoria’s Secret wireless bras to be the most comfortable on these days, cheap bras have you aching and sore by the end of the day, you still have plenty of working nerves BEHIND the implants).
The scars are healing nicely and can easily be covered up by my bra or thick swimsuit top.
You get random shooting nerve pain as nerves knit themselves back together, but it is worth it. The scars everywhere are healing very nicely! I am 3 months out after surgery and they are fading more each day. It is amazing and I don’t regret my surgical adventures. I made the right choice for me.
I am as back to “normal” as I think I will ever be. I actually feel like my brain and my body are up to par with pre-treatment Mandi. I may not quite remember what it was like before, but I am better at taking care of me, so maybe it all evens out in the end? I may have to try a little harder to remember some things from last year (I think your brain starts to intentionally forget things or chemo brain kicks in, but either way, some emotions and experiences may best be forgotten). I don’t care to block it out of my life completely, as much as I want to pretend like it never happened, it did happen. I am also fine talking about it with other people (down to the details of my surgeries, because I think surgical options, even with complications, are worth having).
Springtime has come to Utah and with that comes outside time which makes me so happy. I missed the sunshine. When Mike was working from home a gentleman who does yard work stopped by and asked if he could trim the 50 year old ugly bushes out front, Mike called me and I suggested that the gentleman could rip them out instead. So he did, and I came home to a yard with huge uprooted bushes all over.
We have spent the entire weekend digging in the dirt (which apparently my lack of chemo this spring means I don’t have a good excuse to get out of yard work, darn). The bushes took up a lot of space so we have been planting bulbs, smaller bushes, grasses and decorating with rocks. You can actually see the front of our little house now. So strange!
Now we just need more grass.
Mike and I have lived in this house for almost seven years now. I have been itching to buy a new house, but I have been saying that I want a new house for years, so for now we will just keep making this one nicer – at least now that you can see it (I wish I had taken a before photo).
