Jill Of Some Trades

And Master Of At Least One


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Behind the Pink Ribbon: October 19th, 2017

I remember the words like they were yesterday. I was sitting in the emergency room at North York General Hospital with my sister. She was angry with me for making her go. Her arm was swollen and she showed me, so I immediately said that we needed to get it checked out. She sat down with me after speaking with the triage nurse. I said, “So, do they have an idea of what it is?” I naively thought that the universe wouldn’t be cruel enough to give my sister a major illness. She looked at me, and said matter of factly, “I have breast cancer.”

I felt like I had been punched in the stomach. I immediately denied it, saying “That’s not true.” I realized, in horror, that it was. I remembering sobbing. I was unable to contain the grief I felt in that moment. It was the worst news possible, my mother was also dying of breast cancer. I didn’t know what to do with myself. I couldn’t stop crying, and my sister needed my support.

“How long?” I asked. She knew what I meant.

“I’ve known for a while. A few months maybe.”

“And you didn’t tell me or go to a doctor.”

“No,” she whispered.

“Is it because you were scared?”

She nodded unable to speak.

“I’m scared too, Michele, so scared. But I’m here, and I’m not going to go anywhere. We can’t tell Mummy until we know everything.”

She nodded in agreement. I proceeded to cry some more, still not able to control myself. I literally cried for hours. Michele was shocked at how broken I was over this. Although we all had our moments, I usually saved my tears for sad movies, or for my worry over my mother’s illness. Never in front of my mother of course, I only let her see me smile, or the odd time, at a doctor’s appointment, see my worry, although I learned to control that too and focused on being her advocate. I was her primary caregiver – although I had help with the day to day with the most wonderful “ladies”, I went to all of the medical appointments. I ran my mother’s errands. I handled her finances (mostly just doing the legwork – her mind was a steel trap). I stayed with her for hours in the hospital. But, I just couldn’t wrap my head around this moment.

I couldn’t face the thought of losing my mother, but as sad as that made me, my sister’s illness devastated me. Losing your parents, although hard to bear, is natural. Your siblings are supposed to be there for you in your old age. In those moments, my unassuming sister finally realized how important she was to me. I realized that life would never be the same. Michele said, “It’s tragic.” I couldn’t speak, the lump in my throat was so large, so I just nodded. There was a lot of nodding.

As the clock struck midnight, the day gave way to October 19th. A sad day in our family. It was the anniversary of our beloved grandmother’s death. About an hour into the new day, Michele was finally called in to be seen. She looked at me, and said, “You aren’t coming in yet.” So, like a child, I stood outside of the exam room, mindfully doing what I was told. I knew that my sister was angry with me. She was angry because I was making her face the truth. She could no longer deny that she had cancer. I was shaking, because I knew that the ER doctor was going to confirm our worst fear. I heard him say to my sister, “You know that the news isn’t good, don’t you?” She simply said, “Yes.”

As he walked out of the exam room, he looked at me, and said, “You made her come in?” I said yes. He then said, “You did a good thing.” In that moment, I didn’t think so. It felt like Pandora’s box was opening, and the truth was too much to bear. I went into my sister’s room, and we looked at each other.

She said, “I’m going to fight.”

I said, “I’ll be there for you, every step of the way.”

And then, I broke down again, not realizing that there could be any tears left, and said, “Oh my god, how can we do this to Mummy?”

My mother had been through so much, and finally had a bit more energy. She was bedridden, but brave, and funny and herself. I adored my mother. Admired her. My sister did too, but as she always said, I was a suck up when it came to my mother. I was “the baby”, like it explained everything. No matter how old I was, my mother still introduced me to her friends as, “And this is the baby.” I’d smirk and Michele would roll her eyes….but….

I was the one that my mother relied on the most, particularly with her health. I could deal with doctors. I took the time to learn every facet of her illness. I fought for her. I was her voice when she was too tired to speak. I wouldn’t let the medical system write her off. Caregiving and advocating for my mother was the greatest thing that I thought I would ever do.

I read my mother’s charts, eliminating the scary information that no one wanted to hear. The doctors glossed over the facts with her, not delving too deeply. When I read her charts – growing up and hearing medical terminology my whole life helped – I knew how bad it was. She would ask, of course, what the charts said, so I would read her portions – only those portions that gave her the information that the doctor’s gave – my mother knew all of the same terminology that I did and more, having worked in my father’s office for so many years. I was always so careful not to mention how broken her body was, because I didn’t want to break her spirit too. My sisters told me that they didn’t want to know what I knew. What could I do? I had to keep it to myself. In that moment (yes, I know that I’ve said it a lot), I knew that I would have to do the same for my sister. There would come a time when I alone would know the secrets that she didn’t want to hear about her illness.

We left the hospital with an appointment in hand with a surgical oncologist. It was around 2:30am. When we walked in the door, I bent over a chair and sobbed again. My sister tried to comfort me, but she was exhausted. We slept on the sofas together in the living room. She was afraid to be alone and I was afraid of what would happen if I couldn’t see her. I tossed around all night – too afraid to close my eyes. She slept mostly. She told me to go to work the next day. I was supposed to go to my mother’s, like I did almost every day. We agreed that I would go, and that I would hold it together.

I remember when I walked in, I put a big smile on my face before I saw my mother. She smiled, her big beautiful smile. I held her hand and she asked why I looked so tired.

“No reason Mummy, I just didn’t sleep well. Work was busy, the usual.”

“Dayo – my Dayo, you are doing too much. You need to take care of yourself.” (Dayo was her pet name for me).

“I’m good Mummy, don’t worry about me. Save your energy for you. I’m ok.”

Only I wasn’t. How could I be? But, if you have ever been a caregiver, you know that there are days that you will be. And days that you won’t. It all depends on the people that you are caring for and their test results. You begin to live your life in 3-month increments – from CT Scan to CT Scan. If the results are good – you feel elation. If the results are bad – then you feel despair only you can’t show it. Then you leave the appointment, look at your loved one and say, “The test results don’t account for everything. You are still here. You’ve got this.” Inside, you know that’s not true, but outside, they need to believe you. So you walk with them or push them in the wheelchair and you give them a reason to believe what you are saying, whether you yourself believe it or not.

October is Breast Cancer Awareness Month. Get checked out so that nobody has to have a night and a day like October 19, 2017 and so many days and nights before and after that. And remember that behind the walks and the pink ribbons, that there are stories of real people. One of those people was my mother, the other my sister. Their lives deserve to be remembered and so do the lives of so many others.


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I Know What I Know

The days go by slow, but the years go by fast…my “frousin” Margo says and it is so true. Every day feels long, but somehow the weeks slip by so quickly. I wake up, and it’s Monday, and I blink and somehow it’s Friday. Day after day, I wake up, and I get out of bed, and shower and get dressed and go on with my life, because that is what I have to do. My mother and sister didn’t fight so hard to live, so that I just lay down and die. That’s what I tell myself every single day. People say, oh you can move on with your life now – but it was never a burden before. I went from caregiver to estate gatekeeper. I went from a daughter and sister to being an orphan. People expect life to go on, and I think that is really their hope. What you are as a mourner is a window to future grief for others. And it’s scary – I know. It is part of life. I know. Sometimes, in the most profound way, moving on with your life is much harder than the high alert situation of being a caregiver.

If you ever have been a caregiver, you know what I mean by this statement. You look at your loved one’s colour. You ask, expectantly, and with a tiny bit of dread and fear, how they are feeling. You take temperatures, listen to breathing, hope that they’ll eat. You listen for coughing. You tiptoe into a room at night to make sure that they are breathing and sleeping peacefully. Sleeping becomes fitful (yours of course). You live in fear daily of what that day may bring or breathe a sigh of relief if the day was a good one.

You learn things that stay with you. Many don’t know this, but here is a sample of what I can do:

-I can give injections, both subcutaneous (yes, under the skin) or through a port

-I can hook up a portable oxygen tank

-I can inject morphine into someone’s mouth through a syringe without wasting a drop

-I can take a pulse

-I can tell you, in detail, what the difference is between HER2+ and HER2- breast cancer

-I can deal with vomit – lots and lots of vomit, get a bag to the person before they throw up and deal with cleanup after

-I can dress weeping wounds gently and carefully, keeping them clean and look out for infection

-I can turn an IV on and off

-I can lift a patient from their bed without hurting them

-I can move them in their bed by myself if I have to, but it is so much easier with help. It is a struggle though

-I can pay attention to details and advocate for a patient with a doctor or nurse if I have to

-I can tell you what a number of different chemo/immunotherapy drugs are, and what side effects my sister and mother had from them

-I can make a person’s final wishes happen and speak to doctors and nurses about what was in their living will

-The hardest thing that I can and have done is tell someone that it’s ok to go – that I’ll be ok and they will too. I’ve had to do this twice, and each time, it cost me so much more than I can explain

I’m not telling you this so that you’ll admire me or pity me. I’m telling you this so that if you are a caregiver too, that you know that there are people that understand. You will never be the person that you were before, and that’s ok. Take your time. You will still have plenty to deal with after – mentally and physically. Think about what you have had to learn to do. It’s a lot isn’t it? It’s even harder during a pandemic with less help available. But you will find a way. All I know is that taking care of the two women in the photo was the greatest thing that I will ever do in my life.


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What Having An MRI is Like

Photo: http://www.nmmc.org/ This was the closest photo that I could find that illustrated how I went into the MRI. My tech wasn’t smiling for the camera though.

I have had exactly one MRI (almost a year ago), but because I am part of the Ontario Breast Screening Program, I will be having them once a year for pretty much the rest of my life. It is not optional. I qualified for the program because I am at a high risk of getting breast cancer. Right now, my odds are 1 in 3, but after menopause they will increase. I don’t really worry about it, I also, as of right now, have a 2 in 3 chance of not getting the disease. Either way, being part of the program will help. I have annual mammograms and they are relatively easy, but the MRI has replaced ultrasounds for me. Click here if you want to know what they are like.

An MRI is not as easy as a mammogram or ultrasound if I am keeping it real. The first time that I attempted my breast MRI I panicked. It is not to say that you will, my situation was a little different. First of all, I had ankle surgery and had a 3 hour wait at a different hospital that very day for my final orthopedic appointment. I went to work in the afternoon, then worked out with my trainer and had dinner with a friend arriving at the next hospital, Princess Margaret Cancer Centre at 8:30pm. It was already a long day. It was also at the hospital that I used to take my mother to and that ended up causing part of the issue.

Being back at that hospital was overwhelming for me. I was sitting in the waiting room where I had taken my mother for one scan or another. I walked through the hallways that I once walked with her. It brought back a flood of memories, both good and bad. I sat in the waiting room, trying to hold back tears, not very effectively, while I waited for them to call my name. I went through a lot there, a lot of running around, fixing things, advocating for my mother, and it all came back to me in the moments that I sat in the waiting room.

When I was finally called after 10pm for my appointment, I was ok again. I figured it was maybe 45 minutes of my life. The nurse sat me down and asked me if I was afraid of needles (nope) or had any issues with claustrophobia (nope). So far, so good, right? Wrong. He then proceeded to tell me 7 times in a row (no exaggeration) that I shouldn’t move and that the contrast dye that he was setting up the IV for may make me nauseous – they administer it in the last few minutes of the MRI. I was told not to throw up in the MRI – to push through and wait to be sick until I got out. After having experienced the most extreme nausea of my life, just a couple of months before after having anesthesia, I was shaken. Yes, nausea is temporary, but knowing that most anti-nausea medication doesn’t seem to work on me, made me very nervous.

Once they put the IV in, I had another short wait until I was called. I walked into the room and saw the MRI. I still was pretty much fine. I was asked to open my gown at the front and lay face down on the table. When you lie down, there is a thin strip of metal that lies, pressing against your sternum between your girls which hang through the two spaces left for them. Your face goes into a lightly padded well (similar to what you would rest on for a massage) and you face a bucket. Once you are properly positioned, you are slowly pushed in. This is where I started having problems – I felt like I could’t breathe. It is extremely tight in the MRI and having something pushing against your chest is very uncomfortable. I told the nurse that I couldn’t do it. She asked me if I was sure, and I said yes.

I called my sister crying. I was disappointed in myself. I watched my sister and mother have to suffer through far more than me, and yet, when it was my turn, I just couldn’t go through with it. She was the one who made me realize that the upset came from being at the hospital that I had spent so many hours at, versus me being a total wimp. When the hospital called me the next day to reschedule, they explained that an MRI was more effective than an ultrasound. I rescheduled and got a prescription for Ativan (an anti-anxiety medication) which is commonly prescribed for MRIs so that I could get through it. I also was worried about having to be perfectly still for 45 minutes. On a good day, I have a really hard time staying still for 5 minutes, never mind 3/4 of an hour.

My sister reminded me to just stay calm and get through it as my second appointment neared and my dread grew. I told myself, no matter what, just get it over with. Again, I went to the hospital and sat in the waiting room that I had been in some many times in the past. I took the Ativan and reminded myself to be grateful that my doctor referred me to this program. When it was my turn, I asked the nurse (a different one this time) about the nausea issue with the IV. She reassured me that it wasn’t common and that I had nothing to worry about. She was very calm, and it made me feel a lot better (plus the drugs kicked in). I popped myself on the table and was in the MRI really quickly. It was uncomfortable having a thin metal bar pressing against my sternum, but I just kept telling myself it would be over soon. When you are face down. you can register the lights around you, but you can’t see them. It was extremely loud, with loud banging and clanging noises. I just get saying to myself that every second that went by meant that I was closer to getting out of this tube.

I heard their voices reminding me that the table was about to shake and vibrate and that was normal. It would last about 5 minutes. That meant, when it stopped, I was close to getting the IV. The IV fluid was the final step in the MRI. I felt the liquid go into my vein (it is slightly cool), and then, after another 5 minutes, I was told that they were moving me out of the MRI and that it went well, meaning that I wouldn’t have to do a repeat.

You have never seen anyone jump up more quickly to get up in your life. I was so happy that it was over and also happy that I wouldn’t have to do it again for another year. Well, that year is up on December 3. I’ll have to do this all over again in about a week. It will be at a different hospital this time, with a 6:30pm appointment. That is kind of a cushy time slot in the world of MRIs. It’s after work and not in the middle of the night. I know that I’ll get through this one too, and so will you if, and when it is your turn. Don’t be ashamed to speak with your doctor about taking something to calm you down if you need it. The important thing is getting through the test.


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Don’t Be a Boob, Get a Mammogram…and an Ultra Sound…

Mammogram

Image courtesy of http://www.torontosun.com & the Ontario Health Ministry

Some years ago, just about three to be somewhat exact, I had and wrote about my very first mammogram https://jillschnei.wordpress.com/2014/01/31/dont-be-a-boob-get-a-mammogram-if-your-doctor-tells-you/ I was a newbie back then to the process and didn’t really go back for my annual imaging like I was supposed to.  After a recent physical and scolding from my family doctor, I’m not only doing annual mammograms, I’m also getting an ultrasound to go along with it.  She is extra cautious, not a bad thing at all, but this isn’t necessary for everyone.   Just a reminder, in case you don’t want to re-read my older post, I have a very strong history of breast cancer in my family, including a primary relative.  I’m also at a high risk because I’m an Ashkenazi Jewess – just a fancy way of saying that I’m Jewish and of Eastern European descent.  Lucky me!

Just in case there are any people avoiding mammograms due to the unknown, I’m going to give you the D.L. (that down-low to all of you people who aren’t as cool as me).  After I changed into my elegant (she says with a sneer) smock, I had to sit braless in a waiting room filled with men.  Yup, my lucky day.  When they called my name, I tried not to jump up – I didn’t want to get two black eyes and was paranoid that my robe would pop open.  I forgot and put my Secret on in the morning.  My friends thanked me, but the technician didn’t.  I had to clean my armpits with cold water and icky hand soap and to make matters worse, I had to dry off with those industrial paper towel which crumbled into little pieces.  Note to self, don’t use deodorant on mammogram day.

I heaved one side of my bosoms onto a small ledge and looked at the “tray” that presses down on girl #1.  I swear, it really does look like an in-tray, except they don’t put any papers in it.  Remember, when they do the imaging, they do two per boob, breast, bosom or whatever you feel comfortable calling the girls.  She helped me position myself (AKA I totally got felt up, but I already complained about not even getting dinner first in my previous post, so I won’t use that joke again).  She was actually really great about everything and made me feel as comfortable as I could standing there topless in front of a complete stranger.  The press down didn’t hurt one little bit, not even any discomfort.  An ad came out in Canada using a panini press to remind women that even if they are pressed for time, there is always room to schedule a mammogram.  A lot of people found it tasteless, but it sort of does represent that downward press that I was talking about.  I made the mistake of looking down during the press and it really looked like one of those white Chinese buns that you can get with Dim Sum.  Just being observational.

The side squish was definitely the more uncomfortable of the two, but it also doesn’t really hurt.  If you are a guy reading this, skip over this part….don’t peak….Ladies, if you are going for a mammogram, schedule it after PMS time (if you aren’t menopausal) I guarantee you will thank me for this bit of advice.  The whole process took under 5 minutes and that included washing my deodorant off.

Next up – I was called by a very unfriendly former Eastern Bloch honey to get my ultrasounds.  She wasn’t a people person.  All she said to me was move closer to the edge and put your arm up over your head.  She kept making me move to the edge of the table.  I had to stop myself from reminding her that it wasn’t a king size bed.  It was actually more uncomfortable holding that position on each side than getting the mammogram – seriously.  They do warm up the gel, so it’s not freezing, which was my biggest worry.  It takes about 5 minutes per side.  I had to bite my tongue and not ask her “is it a boy or girl?” when I saw the image come up on the screen.  I could tell she would not have been amused.  I just took myself to my happy place – Nordstrom’s – and it was all over in ten minutes.  It’s quite a sticky mess after (no comments please) and I kind of wished that I could shower, but it was a small price to pay for piece of mind.

Breast cancer isn’t a joke, but if I can make this less scary for even one of you by communicating my experience, that’s all I really want to do.  Remember, a doctor doesn’t want you to have unnecessary tests, but early detection with breast cancer is key, so like the title says, don’t be a boob and put it off.

 

 


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A Small Smattering of Things

P1020392

Did you really think I wouldn’t declutter this weekend?  My project for the week was two shelves with boxes of memories – cards, maps, programs letters, etc.  I went through them and while I didn’t toss everything I did get rid of 82 cards (you heard me), 8 theatre programs, one menu and assorted other things that I had no clue why I was keeping.  Was it hard to ditch these precious memories?  Um..no – especially the thank you card from my grade 6 teacher Mrs. Melanson.  She was a real 5 letter word that rhymes with hitch.  Never liked her, and frankly, I don’t think she liked me either.  Good thing I don’t hold a grudge huh?  I realized as I was going through these items that there wasn’t one thing in that whole pile that I had an attachment to.  I still have a huge amount of cards that people have given to me – they are the things that I’m sentimental about and I’m ok with that but if I can’t remember who the person is why hang on to it?

In other news, I took Dr. Oz’s Breast Cancer Awareness Quiz – try it for yourself http://www.doctoroz.com/quiz/breast-cancer-awareness-quiz  I’m humiliated to say I only got 70% on the quiz.  You know which question stumped me?

How many minutes should you spend on each breast in order to correctly perform a breast self-exam?  I won’t ruin it by telling you the answer, but it’s WAAAYYYY longer than I ever assumed or could imagine myself examining one of the girls.  I know that it’s a serious matter, but I don’t know how you spend that much time on just one boob.  I’m glad I took the test, because it reminded me that I have to schedule my second annual trip to the doctor and to schedule my mammogram.

Last, but not least, on my list, it’s time for my moment of gratitude.  Today, I’m grateful that I had an ok day.  It was nothing special, but it was just fine and sometimes, that’s absolutely enough to make me happy.