14th Post – Bean’s Clan 25.07.2013

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This is a photo of my sweet nephew, PJ.  He’s 3.5 years old.  He is one solid tank of a kid and lots of fun.  This photo of us was taken 7 days after my operation.  The couch that was purchased the week before, came in this big box.  I saved the box and delivered it to PJ.

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PJ’s mom is Bean (neither are their real names).  Bean’s not my real sister, but she pretty much is. We’re born just a few minutes apart and we’ve known each other since we were 2 years old.  We’ve always been complete opposites.  Strange how that is considering we grew up together and are so close.  Bean has 2 kids, the eldest being PJ.  I’m PJ’s aunt.  I’m Aunt to his little sister too.  When PJ was born, I insisted that I wanted to be called Aunt My, not Maia.  PJ caught on to the My part without being told, but he calls me Auntie instead.  Auntie My.

Bean came to visit 4 days after my surgery and stayed for 5 days.  She brought her kids, and the kids hung out with Grandma & Grandpa R&R.  I thought that both the R&Rs would like to have a big cardboard box at their place 😉 and PJ would probably like it too.  PJ’s little sister is still a bit young for playing much in the box.

PJ’s Grandpa R helped him build a fort with the box, and then another fort with the same box.  They kept remodeling until there was nothing left to work with. Bean came and hung out with me a lot in the daytime on these days.  Although those days are foggy in my mind because the pain killers turned my short term memory into mush for the weeks following surgery, I know that Bean was there and hanging out with me.  I was awake, I just don’t remember our conversations.  It was like that with everyone I spoke to during that time.

Recently, Bean and her family, her parents, her sister and sister’s children all went to their cottage.  When all the family had arrived, PJ kept asking “what about Auntie My, is she coming?  She’s family too, right?”  Aww.  Of course I am 😀

Here is a photo of Bean and I, taken 9 days after surgery.  Bean and PJ look so alike.

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13th Post – Almost Bought a Bra 22.07.2013

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I almost accidentally bought a bra today.  I was walking through the department store and past some bras on a rack.  There was one I liked hanging there and it looked comfortable.  And I was thinking of picking it up and buying it, because it looked like I wouldn’t even need to try it on because it wasn’t underwired (easier to judge if it will fit if it doesn’t have the underwire).  I was about to pick it up and then I finally remembered that I don’t have boobs.  Too bad, it was pretty.  My mom was with me and she too forgot that I didn’t have boobs.  She was like Why don’t you…Oh ya, I just remembered.  Maybe I’d remember these things more if I weren’t going through menopause?

12th Post – First Breastless Month 21.07.2013

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It has been exactly 1 month since I had my double mastectomy.

One month ago I was sleeping in the hospital, wiping my face with a towel that had probably been used to clean my crotch after peeing, and scratching myself raw all night.  One month on and I think I may be starting the hot flashes that come with menopause.  Huff da.  I prefer the hot flashes over the full body itchiness though.

Here is a photo of me that was taken one month after my operation.  The wounds have gotten much redder since the bandages came off.  I wish I had taken a photo of them more regularly, but I didn’t.  The bandages came off one week after surgery. Underneath the bandages was pieces of tape covering all of the incision area.  Those pieces of tape stayed on for 2 weeks.  When the tape first came off (two weeks after surgery), my scars weren’t red.  They were so tidy and looked just like a stitched up turkey at Thanksgiving.  Now they are getting redder as the days pass.  The doctors are certain that they aren’t infected.  To me, it seems that the stitches are slowly coming closer to the surface of my skin and are working their way through to the surface.  I don’t know why they want to do that, but that seems to be the pattern they are taking.1month 008

In this photo, I’ve raised my arms to the side to as high up as they can reach.  I wasn’t able to get either of my arms much above shoulder height until just a few days ago. The right arm is still at shoulder height, but the left arms has shot up.  The physiotherapist said that I would start feeling and hearing little pop noises, and that is good because it means that it is releasing my arm a bit more each time it does that. The past 4 days I have been hearing popping noises from my left chest and armpit area often, and now my arm is a lot closer to moving in its regular way.

A very odd thing that has come out of this is that I no longer feel naked when I don’t have a top on.  After surgery, I looked down at my bandaged chest and said, Oh It’s just like when I was a kid.  It’s back to being in my kid’s body.  It seems so familiar to me.  It doesn’t seem foreign.  And as the days passed, I realized that I felt like I wasn’t naked at all when I went without a shirt.  Remember when you were a small kid and you didn’t know what it was to feel naked?  And being girls, you didn’t think anything of your chest until you started growing breasts.  But before they started growing, your chest was just like any other part of your body, just like your arm.  That’s what it feels like to me.

I miss my breasts and I wish I was able to keep them as they were when they were healthy.  A week after surgery my bandages came off and for a few days I was quite sad and cried a lot about missing my breasts.

Some may ask why I would put a photo like this up for everyone to see.  But I don’t mind.  I don’t feel naked.  In the future, some of you may go through this and have mastectomies and want to know what it may look like.  And I don’t see the point in hiding things when others can learn from it.

And if you have a problem with me being without a shirt, please ask yourself why.  It can’t be that my breasts will offend you, because I no longer have any.  Or is it because I am female?  I don’t even have nipples, so you can’t complain that seeing nipples makes it especially offensive.  If a man had these exact same scars and no nipples, I’m sure no one would have a problem with seeing him without a shirt.

If a female shows her breasts and nipples, why does it matter?  Why is it a big deal?  They are just fat, silicone, saline, skin, milk.  Why is it only acceptable to show your breasts in a sexual context?  Why can’t people accept that breast milk comes from breasts and babies need to be fed?  Why does it all have to be sexual or else it’s not tolerated?

Since surgery, I feel more comfortable when I am topless.  I guess it’s because when I put a shirt on, it looks completely different to how it used to look on me.  Yes, some women are flat chested and they have clothing options.  But I haven’t dealt with this shape since puberty.  I have to start from scratch.  I can no longer buy clothing in a store without trying any of it on before buying it.  I can’t look at something and tell how it will look on me.  I don’t even know my size anymore.  It’s definitely a lot smaller than it was, but I still have shoulders.  I now have to try everything on.  Eventually I will go through all my clothing and try everything on to see what works and what doesn’t.  Anything that doesn’t work, I will put into a box and keep it for when I have breasts again – if I decide to go through with the reconstruction.  The thought of multiple procedures is a bit much to think about at the moment.

It feels like I still have breasts.  When I’m wearing clothing and if I don’t look at my chest, then it feels like I have breasts.  Part of it is phantom breasts, and part of it is because I don’t have feeling on my skin in the area of the incisions.  I have feeling in the muscles underneath.  If I press on it, I can feel it.  But if I just touch the skin, I can’t feel anything.  So by it doing this, it feels like it does when wearing a bra – I can feel my shirt on my skin on the upper chest and then the belly, but the breast area doesn’t feel the shirt fabric touching it.

11th Post – Met my Lovely Oncologist Today 17.07.2013

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I met with my oncologist today.  He’s really nice.  We’ll call him Mr Varmt.  No, not like that!  It sounds like they gave me the top guy.  I think they’re giving me the top people because of my age.  I am starting chemo in 3 weeks. Mr Varmt told me that this menopause drug has actually been treating the cancer already.  I didn’t realize this. This drug keeps my estrogen down, so it’s been doing tons of prep work for me to begin chemo, so he said that’s great.  yay!

There’s good news and bad-ish news.  The good news is that my chemo stint will be much shorter than we had originally been told.  We were told that it would be 6 months.  But now the oncologist has set up my drug schedule, and it will only be 18 weeks!  Awesome!  So I’ll actually be finished chemo by the end of November 😀 Before, it would have ended in February.  Dark, miserable February.  So I am quite pleased about this news.  

The bad-ish news is that my hair will fall out much sooner than I had thought it would. Mr Varmt said it would fall out either after the first or second dose.  And he said that it will definitely fall out.  Eeek.  I thought it would be falling out in say, November.  Oh well.  

I also need to be careful not to get sick during chemo.  He said there will be about 9 weeks when my immune system will be more vulnerable.  Those vulnerable 9 weeks are during the first half of chemo.  The second 9 weeks will be much better.  And then I’ll spick and span new for the winter!  So fast!

My chemo starts in 3 weeks.  I will have a dose by IV every 3 weeks.  The first 3 doses will be of one type of drug.  And then the next 3 doses will be of a different drug.  My immune system will be most vulnerable during the first 9 weeks.  So I will cut back on my visits with people.  I will get a flu shot beforehand.

I know I can get chemo treatment in town here, but I will start by going to Ottawa for the first doses.  I may stick with doing the entire treatment in Ottawa, or I may switch to in town here later on.  Even though I have to drive an hour into Ottawa for treatment, I am leaning more towards this because I don’t want to have to see the doctor in Renfrew who runs the cancer clinic at the hospital.  There are two doctors in town who do the cancer clinic.  One of which is my previous GP doc.  Let’s call this person Ms Longyear. 

If this Ms Longyear had done her job thoroughly and compassionately, then we could have known about the cancer 6 months before we finally got a proper diagnosis.  And if we had gotten the diagnosis back then, in November 2012, then I wouldn’t have had 2/3 of my lymph nodes removed.  Instead, Ms Longyear basically told me in nicer terms to fuck off and go find myself another doctor.  My Dad came with me to that appointment, and this is the impression that both of us got from her.  She didn’t directly say it of course.  But she did say that she would no longer deal with anything breast related with me and that I would have to go to the breast clinic in Ottawa for it, or somewhere else. 

Well, when there is something going on with your breasts, you still need a GP even if you are going to a specialized clinic and specialized doctors.  The GP still needs to see the patient once in a while and receive test results and so on.  Therefore, I needed to find a new GP.  Ms Longyear would not even physically examine me.  Ms Longyear isn’t the one who misdiagnosed me though.  She’s just the one who read the result. 

The one who misdiagnosed me is at the Merivale Medical Imaging clinic in Ottawa.

Ms Longyear was upset with me because I was pushy about trying to get an appointment with her to get the results on my mammogram and ultrasound back in November.  I had had a breast cyst 2 years before, and it had remained in my breast until September 2012.  I know it’s very odd timing.  In September 2012 I self-examined my breasts, and the cyst was still there.  And then I checked myself a week later (I was paranoid for some reason in September.  I guess for good reason.  Trust your gut!!!!), and I could no longer feel the cyst.  Instead of the cyst, I could feel a lump in each breast.  These lumps felt different than the cyst.  They were harder.  And they were noticeably growing. 

I also know that the doctor wouldn’t have me come in for an appointment to get the results on the lumps if the lumps were only cysts.  So, in mid November 2012 I got an ultrasound and mammogram.  Shortly after that, my Ms Longyear received the results of those tests.  Her office called me to have me come in for an appointment.  I knew then that they definitely weren’t cysts (no mind that I knew they felt different than cysts) because they don’t bring you in for cyst results.  I wanted to hear the results from her as soon as possible but her office said No, I would have my appointment at the beginning of January 2013. 

The reasons for this were because I was going to be away from December 1 2012 to mid December… and then it’s Christmas and all that stuff.  But if someone has tumours, shouldn’t you tell them as soon as you can?  Especially when that person has a VERY high risk of developing breast cancer at a relatively young age (although I am now the youngest to have it in the family).  I was away in the first half of December because I was over in London with my sister while she was having her prophylactic mastectomy and reconstruction operation.  Ms Longyear didn’t want to squeeze me in for an appointment before I was heading to London.  I phoned and phoned and phoned her clinic and kept asking to get in for a quick appointment.  I needed to know if it was cancer or not.  Until I got the result, I was just assuming that I had breast cancer and I felt that no one cared or was going to do anything about it.  And the lumps were growing fast, which added so much more stress.

So Ms Longyear finally agreed to see me, to privy me of my own body’s health.  I brought my Dad to my appointment with her.  All in all, I was even more stunned by her attitude because I know her personally.  I have been to her family cottage, I’ve been to her home.  If you aren’t from here, you may wonder why I know my GP personally.  You may think that that’s a conflict of interest.  Well, not if you live in a small town.  Everyone knows everyone.  You can’t expect the doctors to not have social lives within the community they live and work.

This is why I don’t feel quite comfortable going to the chemo clinic in town, because I don’t trust her to be caring enough to try to not let me die.  I have heard good things about the other doctor there.  But even if I go to the other doc there, I don’t even want to have to see Ms Longyear on a regular basis.  I know I’ll just get upset if I see her. 

I’ve also heard that the nursing staff at the chemo clinic in town is fab.  I know who some of the nurses are, just from me having grown up around here, and they do seem like really sweet people.  Maybe later on in the chemo treatment I will switch to town.  In the meantime I will drive the one hour each way into Ottawa.  I feel safe and cared for in there by my oncologist.  And my other doctors and support staff are in there, and I’ve had mostly only good stuff from them.  The staff from the fertility clinic, the women’s health clinic (I refer to it as the breast clinic), my surgeon, the surgery and post-surgery staff, and my new GP.

10th Post – Hot, Hormonal Week 17.07.2013

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This is a photo of me from this past weekend.  I was sitting in the hammock, topless while letting the creams dry out on my chest.Image

The past few days I haven’t been feeling so great.  I usually love the heat and humidity and can handle it well, but this summer I am having difficulty with it.  It’s been warm the past few days, and as usual, my body feels fine and comfortable with it, but lately my head feels awful in the heat.  It’s hard to explain.  My body feels fine, normal, hardly sweating, but then my head/brain feels like it’s dissolving or melting.  I start feeling just awful.  I can’t cope with it at all.  It seems that I can’t be in the heat for even an hour unless there is a good breeze or breaks with something to cool me down, like going indoors for a few minutes, or having a cool drink.  I’ve also been using ice packs and cold damp cloths to press against me while I’m outdoors.  That helps a lot. 

Earlier in the week, I was down at the coffee shop sitting indoors with a coffee.  It’s hot in that place and there was no air conditioning or breeze.   I started to feel bad after about 10 minutes.  I wanted to leave, but then my Dad and I got caught chatting with someone.  I really needed to leave, so I went to the counter to ask for a to-go cup for my coffee.  My legs started feeling bad and I had a similar feeling to when you’re about to faint, and I needed to sit.  I went back to my seat before I was able to ask for a cup, and then I started crying because I felt so awful.  Someone working there gave me a cup.  And I feel like a fool because they probably assume that I was crying about not getting a cup straight away.  I should go apologize to them and explain things when I get the chance.  We left after that and I had to stay indoors the rest of the day, and my head felt awful for a good hour.

So it seems that I need to stay indoors mostly for now.  I want to be outside in the hammock or lawn chair, but I can’t.  Instead I have to stay indoors with a fan and cool cloth.  There isn’t air conditioning at home, but it feels like there is.  The walls of the house are thick logs, so it takes a few days for the heat to get into the house.  But since the nights have been cool lately, we open the windows at night for the house to stock up on the cool temperatures, and then we close the windows and doors during the heat in the daytime.

I think I’m reacting to the heat because of the drug I’m taking.  It’s an injection I’m taking once a month and I will continue to take it until I am finished chemo.  I’ve been taking it for 1.5 months now.  Its job is to put me into a temporary artificial menopause and keep my ovaries “asleep” so that the chemo doesn’t attack my hormones.  After I go off this drug, I should have my normal hormone levels back, and hopefully it will also protect my fertility. 

In the meantime, I am going through menopause.  They told me that I will have any and all symptoms of menopause that normal menopausal women have.  I haven’t had any hot flashes yet.  But I have started to get grouchy.  The weird grouchiness started a few days before the mastectomy.  I noticed it.  It feels like it does when you’re a young teenager, the worst age ever!  I’ve started to get grouchy, irrational, angry, and annoyed about things that I normally wouldn’t.  And I can see that there’s no reason to be grouchy about these things, yet I still am.  But now it’s getting so that that line is starting to blur, and I am not quite sure if I am angry about something legitimate, or if it’s the menopause.  Chances are it’s the menopause.  I tell myself that, but sometimes it’s hard to know.

Plus, there’s the crying and feeling upset.  The crying in the coffee shop may have been brought on by the menopause, but it was because of the awful feeling I was having in the heat and not being able to deal with it.  But there are other times when I start crying, over nothing.  And then it seems like I almost start crying more because I don’t want to be crying but I can’t help it.  It sucks.  Menopause sucks.  It’s a lot like being a teenager.  And we all know that being a teenager sucks.  At least I can see that this feels a lot like puberty, and so I know that it’s all in my head, or body, and that I shouldn’t over think it or overreact to things or people.  But it is still hard.  If I hadn’t have gone through puberty, then I would be completely at a loss as to what’s happening with me and it would be freaking me out.

The past few days I’ve been sleeping a lot.  I’m not sure why.  At first I thought it was because I was worn out from feeling so crap in the heat at the coffee shop, but now I’m not sure it is.  I’ve been sleeping 10-11 hours at night, and then having long naps during the day.  I’m sleeping more now than when I did after surgery.  It’s all frustrating because I feel like I am well enough to go out and do some things, but then I either get really tired or melt and feel crap because of the heat.

Tomorrow I have a meeting with an oncologist.  This is a first meeting.  I’m not sure what they’ll say or what information we’ll get.  I do know that I have to do chemo.  That was decided at the end of May when I met my surgeon for the first time.  I have asked them about doing alternative treatments so that I don’t have to do chemo, but they said no.  They said that they’re being strict with me because of my age.  They said that I can do alternative stuff on the side, but not instead of chemo.  They said that if I were older, like 60’s or 70’s, then they would be fine with me trying something alternative instead of chemo.  I think I could refuse chemo if I wanted to, but I don’t want to refuse it.  The chemo will start 6-8 weeks after my mastectomy, so probably in about 2-4 weeks from now.  It will carry on for 6 months. 

Next week I meet with a radiation oncologist.  I’ve been told I should expect that the radiation oncologist will want to do radiation on my armpits, but that I have a good argument not to do it because the cancer was only in the first lymph node on each side and hadn’t spread anywhere else, so it’s most likely not necessary to do it.

9th Post – Photos from 3 Days After Surgery 23.07.2013

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These photos were taken 3 days after my operation.  It was probably my first time outside of the house since getting home after surgery.  In the evening I went up to my neighbour’s place for a visit.  I was going stir crazy being at home.  Even though my neighbours live maybe 200 yards away from me, I wasn’t able to walk there.  It’s also uphill.  So my neighbour drove me there and back.

On this day I was on lots of pain medication.  The day before, I had upped my dose to 3 tablets every 4 hours.  I was told to take only up to 2 tablets every 4 hours.  But I found out that patients in the hospital are very often given 3-4 of these tablets every 4 hours.  Maybe they told me to take no more than 2 because I am small.  But I was in lots of pain.  It was my arms and armpits that hurt, not my chest.  It’s been like that the entire time since surgery.

Since it was the weekend, my doctors were all unavailable.  At this point I hadn’t yet had a home care nurse come to my home to see me either.  Although I did phone the home care nurse service to see if they could help me.  But they told me that since it was the weekend, they wouldn’t do anything or come see me.  Buggers.  That main office works differently than the nurse dispatch place in town.  The local office is good, and they later found out that I called and they called me back to set up an appointment for a nurse to come see me on Sunday.  But it was from Saturday to Sunday that I upped the dose.

I did the 3 tablet thing for just over 24 hours.  Then I went down to 2.5, and then finally back to 2 tablets.  I had tried alternatives to helping with the pain before upping my dose.  I had tried ibuprofen (Advil), acetaminophen (Tylenol), and marijuana cookies.  None of these helped.  And any of you who know me well, know how much I hate using marijuana.  That’s how desperate I was.  I don’t mind if other people use marijuana, I just don’t like it for myself because I can’t stand the feeling I get from it.
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8th Post – I Don’t Have Cancer? I Don’t Have Cancer! 11.07.2013

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Today I found out that I don’t have cancer.  This information arose unexpectedly from my conversation with a nurse with whom I was talking about swimming pools.  This is the nurse who has been dealing with my case at the breast clinic for the past 4 months.  Let’s name her Nurse Jackie.

No, I haven’t seen the show and I don’t know what that character is like.  My Nurse Jackie is awesome all the time.  And she is one of the people I can thank for us finally finding out that it was cancer I had, and not fibroadenomas.  She forced the doctor to finally do a physical exam of my breasts, since the last time a doctor agreed to touch my breasts (in a professional setting) was 7 months prior to that, when I first felt the lumps.

I had called the breast clinic this morning because I wanted to ask them if they knew if it would be fine to swim in a pool 3 weeks after surgery.  Where my incisions are, there is no feeling on the surface of the skin.  So if have an open wound and chlorine gets into it and starts tingling, I won’t feel that warning.  So that’s why I called the clinic to see if they had an idea.  They weren’t sure and they said they’d have someone call me back.  Just after 16:00, Nurse Jackie called me to say that a pool was fine, but a lake wasn’t.  A hot tub was also not a good idea because there’s more bacteria in hot tubs.

While I had Nurse Jackie on the phone, I asked her if she knew what is going on with my CT scan.  Things have been confusing about the CT scan for the past week.  Last Friday when I saw my surgeon for a follow up, he said that he’d be sending me for a CT scan.  He said he had already requested it the day after my operation (2 weeks before our meeting), but I hadn’t heard from anyone at the CT office.  He said he would look into it.  He also told me to call his secretary on Monday to go over some other things with her.

On Monday I decided to also call the CT office to see if they even had my requisition order from my surgeon.  They did not.  They said it could have gotten mixed up when the surgeon’s office faxed it over.  So I was to have my surgeon’s office re-fax it to them and include the confirmation sending number from the previous time they sent my requisition.  I called my surgeon’s office and spoke with Barbara (also a name change) and told her the CT office hadn’t even received the requisition.  [What’s the short form for “requisition” again?  Req?  Rec?]  Barbara said that she would talk to my surgeon about it.

Barbara phoned me back on Tuesday and said that she had the results from my CT scan.  I stopped her right there because I hadn’t gone for a CT scan yet.  I didn’t even have a date set for a scan.  She said that my surgeon had requested the scan before my operation and that I had gone for the scan a week before the surgery.  What?  The only medical thing I did the week prior to having surgery was that I went for a pre-op appointment, and they didn’t do any tests during that appointment, not even my blood pressure or a blood test.  So I had no idea what Barbara was talking about.  I stopped her right there because there’s no way that these were my results, so it didn’t matter what the results were (and I was guessing they were good because she was so eager to spill the beans to me.)  I suggested that maybe they had scanned me while I was unconscious for surgery.  She said that they wouldn’t scan me while I was unconscious.  So Barbara had these results that she was instructed to tell me, and I was refusing to hear them because I was sure that it was impossible to have my results when I hadn’t even been for a scan.  She said that she would talk to my surgeon again and find out what was going on.

Later in the afternoon on Tuesday, Barbara called me back to give the results of the bone scan.  She said that the bones are all clear.  She didn’t mention the CT stuff.  In case you are wondering why I was getting results over the phone, well, my surgeon ok’d this info coming to me via phone.  I’m guessing he ok’d this because he was sure there was nothing in the bones, because you wouldn’t give someone bad cancer news over the phone.  And it saves me a trip into the city.  Or, I am lying about this part.  Perhaps it’s an embellishment.

Today is Thursday and I still hadn’t heard anything about the CT scan.  I decided to call the CT office again to see if they had received my requisition yet.  They hadn’t.  So I planned on calling Barbara again, although I was dreading it because I think she is totally fed up with me.  Before I called Barbara though, I realized that I needed the CT fax number again.  So I called the CT office back again, this is about 10 minutes later.  The woman on the phone recognized my voice from speaking with me minutes before, and told me that she had called my surgeon’s office to ask about the requisition.  The person at the surgeon’s office (it was probably Barbara) said that there hadn’t been a requisition sent yet and that she needed to talk with my surgeon first.

So then the CT office is confused, and I am even more confused.  I no longer wanted to phone Barbara because I didn’t want to deal with it anymore for the day.

And then Nurse Jackie suddenly phoned because she was returning my call from when I had phoned the breast clinic in the morning.  And this brings us back to where I first started.  I filled Nurse Jackie in on what all had been happening this week with the CT stuff and asked her if she knew what was going on and why I wasn’t getting an appointment for having a CT scan.  Nurse Jackie looked at my files and could see that I had been for a CT scan 2 weeks before my operation.  She said that they were using the results from that scan instead of sending me for another scan.

Ohhh, THAT scan.  Yes, I had gone for a CT scan.  I knew I’d been for a CT scan.  But that scan was 2 weeks before surgery, not 1 week before.  And it was for something unrelated, so I assumed not useful.  And I assumed that they needed a scan of a larger area, not just my torso.

You see, I was doing fertility treatment in the lead up to my operation.  I did follicle stimulation and egg retrieval.  After the egg retrieval, my ovaries kept growing bigger when they were supposed to get smaller.  My belly started growing fast, and I could hardly breathe.  I ended up going to Emergency at the hospital because my breathing was so bad.

Earlier that day, I had gone to the fertility clinic to find out what was going on.  They did an ultrasound and could see my ovaries were the size of grapefruits, and my belly was filling with fluid.  That fluid was pressing on my diaphragm, making it difficult to exhale.  I left the fertility clinic after a few hours.  Once I got home though, my breathing got so bad that we were afraid to not go to the hospital.

At the hospital, they had no idea what to do with me.  No one really seemed to understand all the fertility stuff.  At that point I should have just gone back to the fertility clinic.  The Emergency staff thought I had a blood clot in my lung.  I told them that I did not have a blood clot in my lung.  A good friend of mine had a blood clot in her lung once, and she has described the pain to me.  I knew this pain was not that pain.  But since they weren’t sure what to make of me, they sent me for a CT scan just to be safe.  They scanned my chest and abdominal area.  The scans showed big ovaries and no blood clots, and nothing scary (like cancer).

It turns out that I had Ovarian Hyperstimulation Syndrome (OHSS).

So now Nurse Jackie was telling me that they had gotten their hands on that CT scan from 2 weeks before surgery, and were using that to assess me.  She informed me that they don’t do CT scans on legs and the head.  They do do the head if the patient starts getting symptoms.  So then that’s why the scan of my torso was exactly what they needed.

So this is why Barbara had a CT scan result for me.  And that’s why there was confusion at all ends.  I was thinking that that earlier scan wouldn’t count because I assumed that the post surgery CT scan had to be of my entire body, and so that my previous scan wouldn’t be enough for what they needed.  I was wrong.  Poor Barbara.

And I guess Barbara just assumed that it had been my surgeon who sent me for this CT scan, when it was actually an Emergency Room doctor.

I asked Nurse Jackie whether if because the cancer hadn’t spread past the first lymph node and therefore hadn’t spread throughout all the lymph nodes, if then there wouldn’t be cancer anywhere else.  Like if the cancer would ever skip over the lymph nodes and go to somewhere else in the body instead of the lymphs.  She said that it is most likely for breast cancer to go to the lymph nodes first, and once it goes throughout the lymph nodes it then goes to the bones, lungs, or liver, etc., not the other way around.  I didn’t know this.  No one ever told me this.  Just because I had cancer doesn’t mean I know all about it.  And doctors always advise patients against looking things up online because it basically just makes people paranoid and confused.

Therefore, I don’t have cancer.  Nurse Jackie confirmed to me that I don’t have cancer.  What an odd way to find that information out.  This is also why I was so straight to the point in my previous post when I spoke of my bone scan and lymph nodes results being good.  I was just confused.  And I didn’t know that it meant that I most likely didn’t have cancer elsewhere in the body.

For the record, I am horrible at hints.  You give me a hint, and I will not most likely not understand it or I will get it confused.  Please just tell me.   “Maia, you do not have cancer” is the safest bet to tell me that I don’t have cancer.  Maybe I should have had an appointment with the surgeon after all, instead of this back and forth and monkey-in-the-middle phone stuff.  The drive into the city would have amounted to less time and stress in the end.

See, I told you all that I wouldn’t have cancer in a month from when you guys got that initial letter! 😉

For those of you who haven’t seen what my belly looked like when my ovaries were massive and I had a belly filled of liquid, here is a photo.  This was taken on June 9.2013.

 

 

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