oncology

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.

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

Good News, Bad News

Posted on by mainelyhopeful

The good news? Self inflicted carpal tunnel is not a reason to stop chemo early.  The bad news?  I have no excuse to stop chemo early. Ha!  Actually I told my oncologist that I wanted to continue after coming this far and she agreed.  My numbers were looking good and my hemoglobin is on the rise and I’m already feeling it. I have no idea how low it got because each week I’m told my numbers look good. I assumed that meant I was some kind of hemotologic savant, but apparently all it means is they haven’t bottomed out yet so lets see how sick we can make this chick before she cries uncle.  I will assume my all time low was week six. That was the first time I really felt the full effects of all of this. Week seven (last week) was much better with only one bad day physically and one day when I was doing an internal one woman rendition of Camille Image.all day. It was all very dramatic and silly.   Sunday and Monday were really good days. I visited with family, got a lot accomplished at home, did errands and bought some beautiful plants to start working outside as soon as I can.  Next weekend we have two daughters graduating ..college and grad school!, Mother’s Day to celebrate and lots of family time. I’m determined this will be a good week and I will have plenty of energy to enjoy the weekend (by that I mean I plan to spend the next few days doing as little as possible so I can fully enjoy the festivities on the weekend).

Only 4 more treatments left. I had my favorite oncology nurse in the lab today.  She took my port virginity so we have a special bond. Actually they are all pretty great. Except for that one redhead whom I have never seen again. She must have been filling in or was fired after stabbing me in the chest accidentally sticking the needle in some part of my anatomy other than the large bullseye with all the scarring from previous needle sticks. Honestly, I can see how that could happen. If you were blind.  After she offered to try again and I said “oh hell no! Sorry, you need to get someone else, you only get one shot to kill me“. She brought in a supervisor who slipped the needle in effortlessly. Before she did she asked if the skin was still numb from the spray they use. I said “Not as numb as that one”. We all laughed uncomfortably and I made a mental note that it’s probably not a good idea to insult people whose job it is to stick large needles in your chest.  I’m usually pretty good about keeping my internal running monologue to myself but sometimes my filter slips. And sometimes I only pretend it slips.  That chemo brain has to come in handy for something.

Off to watch the voice and root for my girl, Juliette!  Image

 

Vivid dreams or acid flashbacks?

Posted on by mainelyhopeful

Okay, I’ve never actually dropped acid so I’m going to have to go with blaming the AC for my nightly forays into the most bizarre mind twisters that you can imagine. I blogged about this phenomenon after my 2nd treatment but at that time it was not a daily occurrence. Though I have always dreamt, most days I wake up with only a vague memory of the dream and by the time I have had my first cup of coffee I’ve already forgotten it. Once in a blue moon    the dream will stay with me for part of the day if it was disturbing in some way or very pleasant and I want to hold onto it. I rarely have nightmares.  This is different. Since my final AC on 2/28 I have woken up every morning between 4 and 4:30 a.m. I fall asleep between 10 and 11 every night and sleep soundly until that time. Once awake it will take me as long as an hour to fall back to sleep and I will sleep until 7 or so, but I will have vivid and such detail oriented dreams that I can remember all of them.  Some feature Disneyesque animals, family members, locations that are all recognizable but morph from place to place so that it feels like I am in several places at once.  One had me in the hospital. I was in room 407 and could clearly read that on my wrist band, along with my name, dob and medical record number, which sadly I have memorized.  I was wandering around, sick and confused and begging for help.  I could not get back to my room and no one would help me. Stairways would turn in to fun house slides and elevators were actually large rooms revealing hospital personnel doing God knows what behind the scenes.   Turning a corner brought me to Downtown Disney (the Disney theme is recurring for some reason.. I guess I need some Magic). The dream went on forever and I never did make it back to room 407.  I have had dreams about babies and dreams that caused me to wake up laughing.  Dreams that were so real I could smell flowers and grass and taste things.  One dream was about a 4 year old girl (that to my knowledge does not exist) an old family house and some mysterious family secrets. I woke up worried about her.  

Clearly the dream about the hospital doesn’t take a genius to figure out.  Being a cancer patient (or I imagine any patient with a life threatening or life altering disease) leaves you feeling at the mercy of people who don’t know you and don’t have an emotional interest in you, only a clinical one.  That’s not a bad thing, except it can sometimes make you reluctant to ask for more.  I do find myself sometimes minimizing the effects of my treatments. After all, I’ve memorized all the possible side effects, taken measures to treat them as they occur and know which ones require medical attention, so they hardly seem worthy of a mention at my visits if they’ve  already resolved.  It’s like I wouldn’t  dream of bothering anyone. Especially after my thwarted nocturnal wanderings back to room 407! 

It’s gotten so I am alternately curious about my next dream and dreading it.  When my eyes snap open in the wee hours I know the next few will be interesting. I also know I will likely be exhausted all day. 

  

Making do

Posted on by mainelyhopeful

When we arrived at the cancer center there were these huge blowers in the lobby. Didn’t think anything of it until I saw several groups of men in hard hats going through the doors to Medical Oncology. Had my lab work and was taken back for the nursing assessment where I was told the place had been under water yesterday!  A pipe froze and burst and they were shuttling patients to the hospital all day for chemo. Today they had made accommodations on site, so after the nursing visit I waited to see my Oncologist who was waiting on my lab results. The flooring had been pulled up on in the exam rooms and the baseboards removed. There was a lot of hammering and sawing going on and those huge blowers everywhere.  What is usually a very peaceful space was complete chaos. When the doc finally got my results and came in to speak with me she was asking me the same questions she had asked at my interim visit.  I answered them but after a few minutes couldn’t resist saying we had gone over all that last time. She didn’t realize I was here for a treatment or was so frazzled from the chaos that she forgot!  It was nice to see her in that human light. Not that she is the type of doctor to hold herself “above” her patients, but still.. it made me laugh. We finally got upstairs where they had transformed a conference room into chemo bays (but with no privacy at all). One man was snoring so loudly I thought he was choking and wondered why no one seemed concerned.  Another was getting sick and they had to stop his infusion and the Oncologist came to speak with him. They were just starting it up again when we were leaving a few hours later. My meds were not there, had not been ordered, so we had to wait for a bit. Once I got them it all went smoothly. I was sad to see  the man in the chair closest to me was a teacher from my high school. I don’t know what kind of cancer he has, he didn’t say and I didn’t ask.  He and his wife and my mother chatted the whole time we were there and when I was leaving he asked when my next one would be and wondered if he would see me again.  It was a very different experience from my first one, but the time flew by and I was grateful not to be shuttled to another building like the poor patients were yesterday.

Today was also the first time since my hair loss that I ventured out without a wig.  I have a beautiful wig but my scalp is still very tender and even with a liner it hurts. I have been wearing it more out of consideration for others. At home I wear one of those really soft sleep caps or nothing at all.  I even stepped out onto the deck with my naked head and quickly remembered the date!  Not going to do that again.  Today I wore a really pretty blue scarf that just happened to match my outfit. I felt more confident in that. I am certain even the most casual observer can tell I’m wearing a wig and it makes me self-conscious. Strangely, wearing a head scarf did not. Go figure!

I just want to add a funny that one of my Daisy girls posted for me today.  Thanks, Gumbo!

 

Shit Girls Say to Other Girls With Breast Cancer

Mixed messages

Posted on by mainelyhopeful

Anyone else getting mixed messages from your docs?  I saw my surgeon for my final postop visit. Everything is healing well so he has discharged me, except not… I can call if I have any further problems without waiting for referral, I have a “Fast Pass”.  My followups will be at the Cancer Center when my treatments are done, except I should see him yearly to remain an active patient, but there really isn’t any need since my follow ups will be at the Cancer Center, but I can, but I don’t have to.   Clear as mud. Since there are obvious changes in my breast from surgery I asked if there would be more and when I would know the “new normal”  as far as doing self breast exams. He said there was no proof that self exams did any good.  (WHAT???) or mammograms for that matter.  I reminded him that I found this lump myself. So I should do them. Or not. Apparently it’s up to me.  I skipped my mammo last year based on the new protocol that every other year is sufficient and look where that got me.  It wouldn’t have changed the reality of the cancer, but it would have been caught earlier and maybe it would not have spread and I could have avoided the chemo. We’ll never know.  I’ve had similar conversations with Oncology.  For instance, when asking about side effects I get the standard “Everyone’s different” and then in the next breath.. “You WILL experience (fill in the blank)”.  And usually it’s the one side effect you hope to be spared .. like hair loss.

I’ve heard of chemo brain, but I thought that was supposed to affect the patient, not their providers. That being said, I really do like my doctors and my surgeon ended the visit by telling me I look remarkably well for someone undergoing chemo and pretended he didn’t know I was wearing a wig by asking if I had experienced any hair loss yet. You gotta love that.