radiation

Just for fun

Posted on by mainelyhopeful

I’m going to start keeping track of the more insensitive comments around my cancer care.  I know that sounds petty, but like I give a shit.

This week’s winner… I was asked to let a man go ahead of me for treatment on Thursday. Poor guy needed a full bladder for radiation and he did not time things very well. Of course I had no problem with it.  A nurse who does patient education (and whom I have never seen before) was waiting for him and decided to sit down and chat with me. She asked how I was doing and commented on my hair growth. Then she said “as far as we ( btw.. who is we?  are you speaking in the royal sense or is there is a mouse in your pocket?) are concerned you can dye it anytime”.  I felt a horrified giggle bubble up in my throat.  I have been on auto pilot for a few weeks now and as long as I stay in neutral I can keep my shit together.  I managed a weak smile and offered that I hadn’t decided yet and may just keep it as is.  She got this frozen smile on her face and sputtered something about how I could probably get away with that, after all I had a young face.  She must have missed a few classes on sensitivity. Not that I expect (or want) to be treated with kid gloves, but between the doctor who treated me like an inanimate object on Monday and now this I’m starting to wonder if this is commonplace. I have been so lucky in my interactions up until now that I was kind of unprepared. Or maybe now that I’m nearing the end of my cancer treatments my head is a little clearer and there have been assholes all along  but I just didn’t notice.

I’m not nominating the next one for anything because I can’t think of one funny or sarcastic thing to say and this is supposed to be for fun.  It actually left me kind of stunned.  I saw my medical oncologist for the first time since finishing up with chemotherapy.  I had (wrongly) assumed that my doctors all shared information about my treatment especially something like a major change in my family medical history. I missed a full week of radiation when my sister passed away.  Yet, apparently there was no mention of it so I had to tell the nurse when she asked brightly how my summer was going.  Believe me when I say it doesn’t get easier with each telling.  She passed on the info to my doctor who expressed her sympathy as soon as she entered the exam room.  After asking a few questions she said she had a patient who just lost a daughter and that was probably worse. I just said yeah, it’s been pretty hard on my parents. What I wanted to say is.. of course it’s worse for a mother to lose a child, but it’s also pretty fucking horrible for a child to lose his mother and a sister to lose her only sibling.  Not to mention for a man to lose the woman he loved who he hadn’t had nearly enough time with, three little boys to lose a loving presence in their life, and for their mother to lose a trusted confidant. But I just sat there.  Because I didn’t want to make her feel bad.

Honestly, the hospital really wants to stop sending me those questionnaires. I may start filling them out.

The Big C

Posted on by mainelyhopeful

Just finished season 2 last night. Anyone else watch?  I love the show, but it’s not terribly realistic.  For that matter neither is Breaking Bad, which is next on my list. Without giving away too many spoilers.. has anyone undergoing cancer treatment ended up socializing with their oncologist? Been told the only way to know if the chemo was working was by the severity of side effects?  Been asked to speak to a roomful of residents and told them all off? Attended their own funeral?  Run a 26 mile marathon after only 2 days of training while your blood counts are in the toilet?  Started manufacturing meth?  I feel like such a slacker and I’ve only got a little c.  I need to reexamine my life and do something really big. Or not.

On my own cancer front, I’m about halfway through radiation with only some slight pinking (pinkening?)  of the skin on my side.  I was told to put aloe on the “area of radiation”. I was not, however, told how large this area would be. That would have been good information to have from the beginning.  The area I have been treating all along is fine.  All in all, that’s my only complaint and it’s a minor one.  I missed a week of treatments and then the tech who I had been seeing daily was on vacation for a week. When she came to take me back on Monday she walked right past me and then returned a few moments  later for me. It took me a few minutes to realize she hadn’t seen me without a wig or wrap.  I’ve retired them for good.  And my eyebrows! They literally came in overnight. That was kind of weird. I have eyelashes again too. Little stubby ones, but nice and thick and full.  A return to normal, or at least a new normal.

No big deal, huh?

Posted on by mainelyhopeful

First of all, let me start by saying incompetence pisses me off. Aside from that, though, anyone undergoing cancer treatments knows what it is like to count down until you are done. Final chemo, final radiation, and later, hopefully, final routine check if you hit the coveted 5 year mark without a recurrence.  Like anyone else I am counting down my treatments.  I stayed on schedule through 16 rounds of chemo. Now on to radiation..  8 down, 25 to go. 5 more weeks of 5 days a week, starting today.  My “last” day is was 8/10/11.  I live 30-40 minutes from the cancer center depending on traffic/weather. I give myself 45 minutes to get there. I usually arrive 10 minutes or so before my scheduled treatment.  Today was no exception. I checked in, got undressed and sat to wait. There was a mishap when a lady fell in the bathroom and was calling for help. There wasn’t a nurse in sight and she couldn’t reach the call button. Unfortunately she had fallen against the door, so I couldn’t open it to see if she just needed help standing or needed a nurse.  Another patient went to find someone while I stayed with her. Once the nurses arrived I got out of the way and continued to wait.  My name was called and the nurse who (I think) is in charge of the scheduling said “I left you a message!”  Okay, but here I am.  She said the machine was down (again!.. this is getting to be a habit, though I’ve never been sent away before) and she had called me to cancel.  I asked what time she called and she said “a few minutes ago”.  Splendid. A few minutes ago, while she was calling my house I was already disrobed and freezing in the waiting room. She informed me the “other machine” was up and running but the  one I was scheduled for was down. I was already there. I was undressed. There were only two other people waiting and one had been wheeled out on a stretcher. Surely they could have squeezed me in even though they were “booked solid” until 5. My treatment takes all of 5-6 minutes.  I debated arguing, but I was afraid if I pissed her off she would turn up the juice.  Then she said I hadn’t wasted the trip because Dr. Jones was seeing his patients today. Well, bully for Dr. Jones’ patients. I am not one of them.  She kept apologizing and of course I don’t blame her about the machine being down or even for being boneheaded enough to call me 5 minutes before my scheduled appointment to cancel. Even if I lived in the parking lot it would take me at least that long to get there.  What pissed me off nearly beyond reason was her flippant.. “oh it’s no big deal.. we just tack the missed appointment(S) on to the end”.  Yeah, it is a big deal to me. It’s a fucking big deal.

Relieved and frustrated

Posted on by mainelyhopeful

I got my results from the BRCA 1 and BRCA 2 gene mutation testing today and I am negative! What a relief to know that I haven ‘t passed this on to my daughters. They will have to be watchful and start getting mammograms earlier than most women, but we can do that.  Actually the rule of thumb is 10 years younger than the earliest breast cancer diagnosis and I am 49. That’s about the age they would start anyway.

While I am extremely relieved and grateful I am also frustrated and a little pissed off. I was told at my meeting that results would be available in 3 weeks (I was tested on June 18) and then I was given an appointment to get the results on 7/30 (6 weeks later!). I was told I should postpone radiation until I got the results. I refused to do that.  In 3 weeks I would have been nearly half way done, in 6 weeks when I was scheduled to be given the results I would be nearing the end.  Once I had my radiation schedule I called to cancel my appointment as it conflicted. I asked for my results to be given by phone and was promptly transferred to the counselor’s phone, where I was cut off when attempting to leave a message. So I emailed her at the address on her business card. It came back as undeliverable (turns out the lower case l is really a 1).  Finally I wrote a letter requesting the results by phone or mail. I told them I was not willing to wait 6 weeks and I could not keep that appointment even if I were. This was Wednesday. They either got it late yesterday or first thing this morning (Friday) and called. And they had the results available.  They were going to sit on them for 6 weeks had I not sent that letter. Actually, longer had I rescheduled for after I was done with radiation. There was no apology for that, just a feeling they were doing me a huge favor by giving them to me over the phone.  I expressed my relief that they were negative and had the feeling (again) they were hoping for a positive based on the response.  I was (again) given a list of family members that should be tested for Lynch Syndrome. I have passed the information and recommendations along.  Given my experience I am hardly going to be the poster child for genetic testing.  At least at that facility. Unfortunately it is one of only two in our state.

I am even more grateful for my doctors and the cancer center having dealt with this other facility.  This was truly the first negative experience I have had since the diagnosis. Well, other than the whole cancer thing.

My first day at Camp Chernobyl

Posted on by mainelyhopeful

Today was my first of 33 radiation treatments. I arrived early so I could visit the gift shop and buy some clear Aloe and Tom’s aluminum free deodorant and then proceeded to the changing room.  I am supposed to strip from the waist up, put on a johnny tied in the back and a robe and then sit out in the (very well air conditioned) waiting room.  The first johnny I took out was HUGE.  As was the 2nd, 3rd and 4th.  By now the laundry basket was full and the pile was dwindling so I gamely put on the 5th one I pulled out.  I wrapped it around myself 3 times and had to pull the strings through the arm holes and tie it in the front.  Anyone that needs something that big will likely not fit into the CT scan, so I’m not sure why they have them, let alone so many.   I assumed the majority of the people in that waiting room would be similarly dressed, but nope.  I was the only one.  Everyone else probably got a memo telling them to wait for the next load of clean laundry.  They were all in street clothes. Then I remembered there is another waiting room for those of us in various states of undress.  Anyway I sat there dressed like a burrito until it was time to go back. The treatment went well with only a mild glitch when they told me to take my arms out of the gown.  It was easier said than done. They drew on me again. I am going to bring coloring books for those girls so they will leave me alone.  I thought the tattoos were quite enough, thank you.  After the treatment you get the sense they are in a hurry to get you out and the next person in. Mainly because they whip your form off the table as soon as your head clears it and start setting up for the next guy. So I re-wrapped as well as I could for my trip back through the waiting room to the dressing room. When I stepped out I was turned around. There was a flimsy dressing partition where there should be a door. The tech saw my confusion and said “Oh sorry, just step around it, that’s our door”.  Anyone over 5’4″ walking by would have a clear view of me being radiated. FML.

I leave you with this cute little burrito. Did you know it is impossible to find a stock photo of an adult burrito?  Weird.

Image

Topless and tattooed.

Posted on by mainelyhopeful

So my scheduled 30 minute “let’s just talk” appointment ended 2 1/2 hours later with me naked from the waist up being fondled and tattooed.  If there had been drinks involved Image it would have been reminiscent of.. well… never mind.  I am now all set for 33 rounds of radiation.  25 to the breast and axilla and then an additional 8 just to the breast.  I do finally understand why I would need any radiation at all after all that chemo. Apparently cancer cells can be hanging out in the scar tissue from the surgery. Scar tissue has no blood supply so chemo is not delivered to the area as it is the rest of the body. Stupid scars.   Afterwards I was asked to meet with a very nice man from the American Cancer Society.  He had a lot of information but unfortunately, 8 months in, there was nothing I wasn’t already all too aware of. I’m not sure why this meeting happened now and not at the beginning of my journey, but it was a nice reminder of all that the ACS does.  I took the folder full of information I don’t need and thanked him. It will be a nice addition to the burn pile along with the endless pink themed booklets and pamphlets I was given at my very first visit to the interdisciplinary clinic.  

I mentioned in my last post about the lack of testing following treatment.  Interestingly enough, when I had surgery (at the same hospital, different building)  yesterday and was undergoing light sedation in the way of anesthesia I was told I would need to take a urine pregnancy test.  I declined and then asked what the thought process was here.. I just underwent 6 months and 16 rounds of chemotherapy and not once did anyone ask me to pee in a cup first.  They had no answer for me but did concede it was a good point.  Umm.. yea

My dance card is filling up again.

Posted on by mainelyhopeful

So much for time off for good behavior!  Yesterday I had my port removed exactly one week after my last infusion. Apparently, that’s not the norm judging from the comments from the nurses and docs. Fortunately my oncologist was on board and agreed there was no reason to keep it any longer.  Today I meet with Radiation Oncology to set up the next course of treatment. I don’t think I get measured and tattooed today but I’m prepared just in case.  Afterwards we’ll do a little shopping. It’s a rainy day so no need to rush home. Next Monday I meet with the genetics counselor.  We haven’t made any travel plans for this summer since we don’t know exactly when my 6 weeks of radiation will start, but we are going to Boston for a weekend to visit our daughter and see Springsteen. Image That should be fun and I’m pretty sure I’ll be done with all of my cancer nonsense by then.   Speaking of nonsense, did you know they don’t recommend regular screening? Or at least not for me. No PET or CT scan.  So does that mean I never get to officially say I am cancer free?  hmmm.. not sure how I feel about that.  I’m going to address it again at my next follow up.  I’ve been pretty passive and agreeable so far. That could  change on a dime. 

Besides having cancer full time for the last 8 months we have been doing all the normal every day household stuff and are in the process of redoing our bathroom. They start next Tuesday!  Image  That’s what I see in my mind.. that will not be the reality, but I’m pretty happy with what we’ve chosen and it’s nice to have a project.  While planning this out all winter we acquired an antique clawfoot tub from the old family home.  It is a monster, weighs a ton!  We were planning to have it refinished but then decided to just go with a nice deep soaking tub Image.  There is nothing I love better than a nice long soak with bubbles and a book (which is why I will never fully commit to my Kindle).  Now we are faced with what to do with the tub in the garage. I’m thinking maybe filling it with flowers next year! Image. 

Back to getting tattooed.  I am pretty sure my port scar is permanent, having been cut twice in the same spot, so I’m thinking that would be a great place for a tattoo. How about this?  Image It’s the Chinese symbol for survivor. Whatever I end up with, it won’t be a pink ribbon!

Sixteen Candles

Posted on by mainelyhopeful

Image

I have had the song, Sixteen Candles Chemos, running through my head all week. My 16th, and final, round of chemo is today! When I get home there should be cake and champagne!  Of course I won’t feel like partaking until sometime this weekend, but still.. it should be there. Naturally the only #16 candle I can find is pink (and very big.. sorry) Image

On the home and health front, these last few rounds have kicked my ass. Not enough to require any kind of medical intervention in between visits, just really exhausted. I feel like I am moving through thick mud most of the time.  And my “achy joints” have morphed into some pretty severe bone pain at times. I have one finger on one hand that keeps blistering and peeling.  It was the whole hand last week, steroid cream cleared up 4 digits, but the index finger is being difficult. It is also twice as big as it’s counterpart at the moment and on my surgical side. I’m hoping it’s not a sign of lymphadema, though I only had one lymph node removed.  We’ll see.

On the blog front, I haven’t had a whole lot to say, but I’ve been reading the blogs I follow daily. I see a lot of writing “assignments” or challenges and lots of awards.  I think it would be fun to participate and then I have nothing to say.  Which is not like me at all. I’ll keep reading, though, and maybe inspiration will come.

Today I find out what comes next. I know I will be spending the better part of my summer vacationing in Chernobyl. Other than that, not sure when I see my surgeon to have the port removed or when I start Tamoxifen, what scans I have when, etc. etc.  I have been kind of coasting along during chemo and as long as I am “doing something” I feel okay with this whole cancer business.  Ending chemo feels like a milestone, but for some reason it’s also making me feel a little uneasy.   My genetics appointment is coming up soon. I have very mixed feelings about that. Obviously, it’s important. On the other hand, I’m not ready to hear my whole treatment plan should have been different based on the results or my 20 something daughters have to start making tough decisions about their own future health.   But, for them, my sister and cousins I will go.

While googling 16 Candles I saw this funny. For you Molly Ringwald fans

Image

Today is the end of phase one of my chemotherapy treatment.

Posted on by mainelyhopeful

Today is the last in a series of four rounds of Adriamycin and Cytoxan. I had been looking forward to it as the halfway point and thought I would be happier to see the day come. But instead I focus on the fact that after a 3 week hiatus I am onto phase two.. weekly Taxol for 12 weeks. And then I still won’t be done, it will be onto radiation.  On the AC I had two good weeks out of three the first two rounds. This last round honestly left me feeling pretty exhausted right through. I’ve now developed allergies (never been a problem in the past) where my nose runs and my eyes weep constantly.  Claritin doesn’t help and I’m hoping my Oncologist can recommend something else today.  We have a lot of family events coming up in the spring – birthdays, one daughter graduating college, the other grad school, visits from family. I had big plans to celebrate these milestones, but not knowing how I will feel on weekly chemo, things are kind of hanging and that makes me feel unsettled. 

When I started journaling about this whole thing I was determined to keep it light and upbeat but I’ve come to understand how disingenuous that is.  No one can be positive 100% of the time, no one should feel they have to be. Of course I could choose to only blog when I am feeling positive, but I think more people can relate to the fact that in all aspects of life there are good days and really, really bad days and this fact is no less so when facing a life threatening disease, no matter how brave you want to appear to others (or how brave you think others need for you to appear). And I also think when someone comes along and reads these blogs they need to know that their negative feelings are real and valid and normal! And so is gallows humor if that’s what helps. Most days I can be depended on to make a really tasteless comment about cancer that will either crack someone up or completely disgust them. When it’s the former I appreciate their understanding of my comedic brilliance. When it’s the latter I channel my inner honey badger cuz honey badger don’t give a sh-t!

Today I am going to try and channel my inner glowworm and spread some sunshine.

If you are a fan of irony

Posted on by mainelyhopeful

I was reading a blog this morning by keepthecalm, where she mentions the laundry list of drugs she is on and I had to comment.  We spend a life time avoiding cancer causing poisons.  Stay out of the sun, don’t eat foods with tons of additives, watch what you put in your body and on your body, eat organic, load up on antioxidants, etc. etc. You would have to live under a rock to not know all the things that cause cancer.  Yet, you get cancer anyway. You do all the right things, you try to eat right and exercise, get plenty of rest, and either family genetics or just bad luck sneak up on you and bite you on the ass. Some things you just can’t predict, avoid or outrun.  The irony is in the cure.  To combat the cancer you voluntarily allow doctors to pump you full of poisons on a regular basis for months. You lie still while they blast you with (cancer causing) radiation, you subject yourself  to MRIs, xrays and full body scans.. more radiation,  more over a few months period than many people have in a lifetime. You read the short and long term side effects of the medications and find out that many cause cancer. Yup.. I will cure my breast cancer, but now I’m at a higher risk for uterine and ovarian cancer.  My previously healthy heart may be weakened by the chemotherapy, I could have long term numbness of the hands and feet. Yet what real choice do I or any of us have?  Better to kill the devil we know than worry about the one that may or may not rear it’s ugly head down the road. And if it does, we will use more poisons to kill that one and worry about the long term effects of those.