Waiting to exhale

I finally got the call back from my mammogram. This wasn’t just any mammogram.. it was the first one post diagnosis.  I don’t recall ever having to wait more than a week for results before.  Usually my doctor would call in a day or two to say all is well (or not..in the case of last year’s) and then I would get the generic pink form letter from radiology confirming.  I knew that my doctor(s) got the results a week ago. Still, I hadn’t heard a peep from anyone.  I called the cancer center yesterday and left a message which was finally returned this morning.  All clear.  I was too happy to ask if it was common practice to make a breast cancer patient wait for results of her mammogram.  I know they are read the day of the test or the next day at the very latest.

No one on my team of medical experts has used  the words “cancer free” yet. Or even “no evidence of disease”.   Since these are the same people who had no problem making me hold my breath for over a week I’m going to assume they just don’t see the value in putting cancer patient’s minds at ease, so I’ll say it. Cancer Free!  

Advertisements

What I would tell my providers….

.. if I weren’t such a chickenshit  so unwilling to distract them from the very important work of saving lives. 

First of all, if you are part of a “team” caring for a patient, then please pass on all pertinent information regarding that patient’s care to the rest of the team so that she doesn’t have to repeat herself ad nauseum. In my case, as far as I know, my labs and test results were shared, but other things that certainly impacted my emotional well being, if not physical, were not. Or they were and having me repeat them was some kind of test of my mental/emotional status.   The latter is being generous and I’m guessing it’s more the former.

Please read my chart occasionally. Just before a visit would be awesome if you can fit it into your busy schedule.  If YOU sent me for testing you should be looking for those results.  If I have to ask if you’ve received them and you have to go rifling through the chart to see if you have, it makes me feel a) the test wasn’t all that important to my case, so why the hell did you send me for it (at the tune of $4,000.00 I might add)? or b) you’re just not all that interested.  I realize I am not your only patient. I am not your sickest patient. I have the “run of the mill” breast cancer that elicits a big ho hum in the world of cancer treatment, but for the 15 minutes I am in front of you I should damn well be your only patient.  And you should be as prepared for my visit as you expect me to be.

If you are leaving your practice, a mention to your patients would be really good form.  When I got my diagnosis I was assigned to a team of 3 doctors. Two of the three of you had been here for only one year.   Having lived in this area my entire life and worked in the medical field (first in the  hospital where I receive treatment and then as a medical transcriptionist) I am familiar with most of the doctors, at least by name and specialty.  It would have been comforting to be sent to a surgeon with a long standing practice, however I was very happy with you and you did a great job. No complaints.  Except. You’ve apparently left the area. This is after telling me that if I had any problems in the future I could forego the referral route and just make an appointment.  You told me my followup would likely be with Medical Oncology and there was no need to see you on a regular basis but I could (and probably should) check in yearly to remain active in the practice.   I only found out you had left when my Radiation Oncologist mentioned it.  In hindsight, when I had my port out you said “No need to come and show me the scar. You never have to see me again”.  Okay then.  While I make it a policy not to get emotionally attached to someone who tells me I have cancer, a quick note from your office manager would have been nice. If I do have further need for a breast surgeon I would hope I wouldn’t just be passed off to whoever happens to replace you.  No offense to the newbies, but in the future I want a surgeon who has been here longer than five minutes and plans to stick around.   Same goes for my oncologists.

And oh, the breast care navigators. You nurses are wonderful. You are available anytime  we need to talk.  You come and hold  our hands through difficult tests and procedures.  You run support groups.   I’m not someone who would normally avail myself of a service like this. It’s not that I am unappreciative. In fact, having my hand held during my second biopsy and sentinel node mapping, not to mention getting a phone call immediately after hanging up with the doctor (who delivered my diagnosis over the phone, btw, and only afterwards thought to ask if I were alone) to make sure I was okay was more helpful than I can express.  However, sitting me down less than 24 hours after I received the news I had breast cancer and going over such things as drainage bulbs, tattooed nipples, and the importance of knowing how to draw on eyebrows, complete with a demonstration of how alien like I would look without eyebrows by holding your two fingers over your own, was not only unnecessary (in my opinion), but unwelcome. I may have been looking at you intently and nodding appropriately, but in my head I was screaming “what the FUCK!”.  I can’t speak for other women, but at that point in time I only wanted to know if I was going to live.  Without knowing whether or not I would need a mastectomy (I didn’t) or chemotherapy (I did), much of that information was not pertinent to my case at all.  Once my course of treatment was decided would have been the more appropriate time to discuss the things that applied to me. I should mention the nurse who held my hand and spoke with me over the phone was not the same who sat down with me.  I have no idea if it would have been different speaking with her.  Two completely different personalities.  

I don’t want to make it seem like I am ungrateful for my care. I’m not.  I feel like I got the best care available to me.  My questions were answered and I tried to answer yours as truthfully as I could to aid in your care of me.  However,  I’m not someone who wears their heart on their sleeve or complains about physical discomfort. Outside of members of my immediate family, if anyone asks how I’m doing 9 times out of 10 I will say “fine!” no matter what is going on with me.  I don’t complain about things that I consider minor or things that you, my doctors, have told me to expect and how to deal with.  So, when I fill out those questionnaires at the start of each appointment and mention something like daily nosebleeds for 6 months straight, brain fog, exhaustion, etc..if you brush it off, I won’t mention it again. That doesn’t mean my course was “easy”. I know compared to many people it was easIER, but trust me, it wasn’t easy. Not by a long shot.

Yesterday was the relay for chemo

And I was the baton. My mom brings me for my treatments every 3 weeks and soon that will increase to every week.  The cancer center is 30 minutes from my house but only 15 from hers. My house is also 15 minutes from her’s, but in the opposite direction. Normally she picks me up making it a 45 minute trip for her. She’s happy to do it but I feel kind of bad, especially in bad weather.  Yesterday my dad collected me, dropped me at mom’s and she took me to the center. Later we went back to her place where my husband picked me up after work. I’m happy to report no one dropped the baton and we were even fed and got to visit with my sister and her significant other!  It was a nice day in spite of the reason for it.

Chemotherapy went well, blood work looked good and as usual the nurses were great.  I had a new one this round. She was very efficient but joked around and the time flew right by. Though this was my 3rd treatment it was the first time I was actually in a chemo bay. I had a nice corner unit that was warm and sunny, a comfortable recliner and television. I had my “chemo bag” with a few comforts from home and a novel. Oh I should mention, not everyone was comfortable. My mom kept sliding off the poorly designed couch and was finally given a straight chair to prop her legs on.  I was teasing her it’s because she’s so short, but that couch did look pretty uncomfortable. I offered her the recliner, but for some reason no one ever takes me up on that.    Though the bays have a little privacy in the way of curtains you can hear what’s going on around you. One lady started walking from bay to bay, wheeling her infusion pump along, asking people about their diagnoses and treatment plans and going into great detail about hers. Mercifully she ran out of steam before reaching me.  There was a bit of moaning and complaining going on and you didn’t have to look around to know it was coming from the men.  My nurse said that’s usually the case and we started chatting how men generally do not take illness and pain quite as..umm.. stoicly as women do, which prompted this little joke from her:

A husband and wife presented to the hospital in labor. Once settled in they were told about a new experimental option where a percentage of labor pain could be transferred to the father of the baby allowing him to share in the experience while making it a bit easier on the mother. They both agreed. With the next big contraction he got 25% of the pain and exclaimed “That was nothing”, so they upped it to 50% for the next one.  He still insisted it wasn’t bad at all and was starting to wonder what all the fuss was about. Finally it was upped to 75%.  The baby was born, mother was happy with the small amount of pain and her husband was still amazed at how easy it was.  Later when he returned home he found the mailman dead on the porch.  HA!

I did end up fessing up to only taking half the prescribed dosage of the steroid following my last infusion. It wasn’t deliberate and I’m still not sure how I managed to mess it up, but I didn’t have that big steroid crash that left me feeling so bad the first time around, nor did I have the terrible acne that was attributed to the steroid. My appetite didn’t rage out of control and I slept well. I was prepared for a lecture and a list of reasons I had to take the higher dose, but am happy to report I can remain on the smaller one.  Any time I can take less of any medication, I’m all over it, but especially this.  I like to call it Forrest Gumping when someone in the family does something kind of boneheaded but it works out to their advantage.  So this week I am proud to say I Forrest Gumped my way into less medication and less side effects. Chocolate anyone?

Making do

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

One down….

Today was my first chemotherapy treatment and it went well. I arrived with my “chemo bag”.. a red canvas Trader Joe’s shopping bag with a notebook and pen, novel, Kindle Fire and a hand made breast cancer awareness blanket given to me by an aunt. I was ready for anything.  It was not nearly the horrible experience I had built up in my mind over the past few days. One big concern to me was my port a cath. It was placed 30 days ago today. I had read that if unused it should be flushed every 2 weeks. I have had blood draws and a MUGA scan since it was placed and no one seemed eager to access it. I could have insisted I suppose but hey, if the chick with the fat needle is hesitant to stab a foreign body embedded in my chest, who am I to argue?  I mentioned to the RN who was doing my blood draw today that it was virgin territory. She seemed surprised but didn’t say too much. After swabbing and anesthetizing it she told me to take a deep breath on 3 and plunged the needle right in.  It was no more painful than any other needle stick and worked beautifully. She told me afterwards that she shared my concerns and it should have been flushed within 3 days of implant. Ooops.

Next I had a nursing assessment and then met with my Oncologist. They both went over everything again and answered all of my questions. I find it helps to keep a notebook. I also learned that the Tumor Board has recommended me for genetic counseling. I’m not sure when that will take place.

I was placed in a private room as all the bays were full. I was very comfortable, the nurse was attentive and again explained each step and took time to answer any question I had.  I was given lunch and ate while the anti nausea drugs, steroid and saline were being introduced. Then 2 vials of Adriamycin over 5 minutes and finally Cytoxin for 30. I felt very little in the way of side effects. At the end of the last infusion my sinuses stung a little, like the sensation you get when chlorinated water goes up your nose while swimming. The sensation comes and goes, but is not very bothersome and I don’t expect it to last. There was also a slight metallic taste in my mouth that honestly I did not even notice until the nurse asked if I was experiencing it. I have a laundry list of anti-emetics at my disposal and am taking them on a schedule to hopefully avoid paying homage to the porcelain gods.

I have a list of possible side effects and was told to keep track of and report anything. Anything?  hmmm … I planted myself in the recliner of dread when I came home and waited for the horrible terribleness.  After 30 minutes I became bored and watched 2 episodes of Six Feet Under.  After 2 and a half hours in a reclining position preceded by a 40 minute car ride preceded by an afternoon on a hospital bed I noticed my hips and legs were aching.  I considered writing it down, but then decided I probably needed to just get up off my ass and move around.

I moved from the recliner to my computer desk where I have been enjoying a cup of wonton soup while writing down my experiences. Now it’s off to a hot bubblebath.   All in all, not a bad day at all.

…. fifteen to go